end stage copd case study

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StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

StatPearls [Internet].

Case study: 60-year-old female presenting with shortness of breath.

Deepa Rawat ; Sandeep Sharma .

Affiliations

Last Update: February 20, 2023 .

• Case Presentation

The patient is a 60-year-old white female presenting to the emergency department with acute onset shortness of breath.  Symptoms began approximately 2 days before and had progressively worsened with no associated, aggravating, or relieving factors noted. She had similar symptoms approximately 1 year ago with an acute, chronic obstructive pulmonary disease (COPD) exacerbation requiring hospitalization. She uses BiPAP ventilatory support at night when sleeping and has requested to use this in the emergency department due to shortness of breath and wanting to sleep.

She denies fever, chills, cough, wheezing, sputum production, chest pain, palpitations, pressure, abdominal pain, abdominal distension, nausea, vomiting, and diarrhea.

She reports difficulty breathing at rest, forgetfulness, mild fatigue, feeling chilled, requiring blankets, increased urinary frequency, incontinence, and swelling in her bilateral lower extremities that are new-onset and worsening. Subsequently, she has not ambulated from bed for several days except to use the restroom due to feeling weak, fatigued, and short of breath.

There are no known ill contacts at home. Her family history includes significant heart disease and prostate malignancy in her father. Social history is positive for smoking tobacco use at 30 pack years. She quit smoking 2 years ago due to increasing shortness of breath. She denies all alcohol and illegal drug use. There are no known foods, drugs, or environmental allergies.

Past medical history is significant for coronary artery disease, myocardial infarction, COPD, hypertension, hyperlipidemia, hypothyroidism, diabetes mellitus, peripheral vascular disease, tobacco usage, and obesity.  Past surgical history is significant for an appendectomy, cardiac catheterization with stent placement, hysterectomy, and nephrectomy.

Her current medications include fluticasone-vilanterol 100-25 mcg inhaled daily, hydralazine 50 mg by mouth, 3 times per day, hydrochlorothiazide 25 mg by mouth daily, albuterol-ipratropium inhaled every 4 hours PRN, levothyroxine 175 mcg by mouth daily, metformin 500 mg by mouth twice per day, nebivolol 5 mg by mouth daily, aspirin 81 mg by mouth daily, vitamin D3 1000 units by mouth daily, clopidogrel 75 mg by mouth daily, isosorbide mononitrate 60 mg by mouth daily, and rosuvastatin 40 mg by mouth daily.

Physical Exam

Initial physical exam reveals temperature 97.3 F, heart rate 74 bpm, respiratory rate 24, BP 104/54, HT 160 cm, WT 100 kg, BMI 39.1, and O2 saturation 90% on room air.

Constitutional:  Extremely obese, acutely ill-appearing female. Well-developed and well-nourished with BiPAP in place. Lying on a hospital stretcher under 3 blankets.

HEENT: 

• Head: Normocephalic and atraumatic
• Mouth: Moist mucous membranes 
• Macroglossia
• Eyes: Conjunctiva and EOM are normal. Pupils are equal, round, and reactive to light. No scleral icterus. Bilateral periorbital edema present.
• Neck: Neck supple. No JVD present. No masses or surgical scarring. 
• Throat: Patent and moist

Cardiovascular:  Normal rate, regular rhythm, and normal heart sound with no murmur. 2+ pitting edema bilateral lower extremities and strong pulses in all four extremities.

Pulmonary/Chest:  No respiratory status distress at this time, tachypnea present, (+) wheezing noted, bilateral rhonchi, decreased air movement bilaterally. The patient was barely able to finish a full sentence due to shortness of breath.

Abdominal:  Soft. Obese. Bowel sounds are normal. No distension and no tenderness

Skin: Skin is very dry

Neurologic: Alert, awake, able to protect her airway. Moving all extremities. No sensation losses

• Initial Evaluation

Initial evaluation to elucidate the source of dyspnea was performed and included CBC to establish if an infectious or anemic source was present, CMP to review electrolyte balance and review renal function, and arterial blood gas to determine the PO2 for hypoxia and any major acid-base derangement, creatinine kinase and troponin I to evaluate the presence of myocardial infarct or rhabdomyolysis, brain natriuretic peptide, ECG, and chest x-ray. Considering that it is winter and influenza is endemic in the community, a rapid influenza assay was obtained as well.

Largely unremarkable and non-contributory to establish a diagnosis.

Showed creatinine elevation above baseline from 1.08 base to 1.81, indicating possible acute injury. EGFR at 28 is consistent with chronic renal disease. Calcium was elevated to 10.2. However, when corrected for albumin, this corrected to 9.8 mg/dL. Mild transaminitis is present as seen in alkaline phosphatase, AST, and ALT measurements which could be due to liver congestion from volume overload.

Initial arterial blood gas with pH 7.491, PCO2 27.6, PO2 53.6, HCO3 20.6, and oxygen saturation 90% on room air, indicating respiratory alkalosis with hypoxic respiratory features.

Creatinine kinase was elevated along with serial elevated troponin I studies. In the setting of her known chronic renal failure and acute injury indicated by the above creatinine value, a differential of rhabdomyolysis is determined.

Influenza A and B: Negative

Normal sinus rhythm with non-specific ST changes in inferior leads. Decreased voltage in leads I, III, aVR, aVL, aVF.

Chest X-ray

Findings: Bibasilar airspace disease that may represent alveolar edema. Cardiomegaly noted. Prominent interstitial markings were noted. Small bilateral pleural effusions

Radiologist Impression: Radiographic changes of congestive failure with bilateral pleural effusions greater on the left compared to the right

• Differential Diagnosis
• Acute on chronic COPD exacerbation
• Acute on chronic renal failure
• Bacterial pneumonia
• Congestive heart failure
• Pericardial effusion
• Hypothyroidism
• Influenza pneumonia
• Pulmonary edema
• Pulmonary embolism
• Confirmatory Evaluation

On the second day of the admission patient’s shortness of breath was not improved, and she was more confused with difficulty arousing on conversation and examination. To further elucidate the etiology of her shortness of breath and confusion, the patient's husband provided further history. He revealed that she is poorly compliant with taking her medications. He reports that she “doesn’t see the need to take so many pills.”

Testing was performed to include TSH, free T4, BNP, repeated arterial blood gas, CT scan of the chest, and echocardiogram. TSH and free T4 evaluate hypothyroidism. BNP evaluates fluid load status and possible congestive heart failure. CT scan of the chest will look for anatomical abnormalities. An echocardiogram is used to evaluate left ventricular ejection fraction, right ventricular function, pulmonary artery pressure, valvular function, pericardial effusion, and any hypokinetic area.

• TSH: 112.717 (H)
• Free T4: 0.56 (L)
• TSH and Free T4 values indicate severe primary hypothyroidism. 

BNP can be falsely low in obese patients due to the increased surface area. Additionally, adipose tissue has BNP receptors which augment the true BNP value. Also, African American patients with more excretion may have falsely low values secondary to greater excretion of BNP. This test is not that helpful in renal failure due to the chronic nature of fluid overload. This allows for desensitization of the cardiac tissues with a subsequent decrease in BNP release.

Repeat arterial blood gas on BiPAP ventilation shows pH 7.397, PCO2 35.3, PO2 72.4, HCO3 21.2, and oxygen saturation 90% on 2 L supplemental oxygen.

CT chest without contrast was primarily obtained to evaluate the left hemithorax, especially the retrocardiac area.

Radiologist Impression: Tiny bilateral pleural effusions. Pericardial effusion. Coronary artery calcification. Some left lung base atelectasis with minimal airspace disease.

Echocardiogram

The left ventricular systolic function is normal. The left ventricular cavity is borderline dilated.

The pericardial fluid is collected primarily posteriorly, laterally but not apically. There appeared to be a subtle, early hemodynamic effect of the pericardial fluid on the right-sided chambers by way of an early diastolic collapse of the RA/RV and delayed RV expansion until late diastole. A dedicated tamponade study was not performed. 

The estimated ejection fraction appears to be in the range of 66% to 70%. The left ventricular cavity is borderline dilated.

The aortic valve is abnormal in structure and exhibits sclerosis.

The mitral valve is abnormal in structure. Mild mitral annular calcification is present. There is bilateral thickening present. Trace mitral valve regurgitation is present.

• Myxedema coma or severe hypothyroidism
• Pericardial effusion secondary to myxedema coma
• COPD exacerbation
• Acute on chronic hypoxic respiratory failure
• Acute respiratory alkalosis
• Bilateral community-acquired pneumonia
• Small bilateral pleural effusions
• Acute mild rhabdomyolysis
• Acute chronic, stage IV, renal failure
• Elevated troponin I levels, likely secondary to Renal failure 
• Diabetes mellitus type 2, non-insulin-dependent
• Extreme obesity
• Hepatic dysfunction

The patient was extremely ill and rapidly decompensating with multisystem organ failure, including respiratory failure, altered mental status, acute on chronic renal failure, and cardiac dysfunction. The primary concerns for the stability of the patient revolved around respiratory failure coupled with altered mental status. In the intensive care unit (ICU), she rapidly began to fail BiPAP therapy. Subsequently, the patient was emergently intubated in the ICU.  A systemic review of therapies and hospital course is as follows:

Considering the primary diagnosis of myxedema coma, early supplementation with thyroid hormone is essential. Healthcare providers followed the American Thyroid Association recommendations, which recommend giving combined T3 and T4 supplementation; however, T4 alone may also be used. T3 therapy is given as a bolus of 5 to 20 micrograms intravenously and continued at 2.5 to 10 micrograms every 8 hours. An intravenous loading dose of 300 to 600 micrograms of T4 is followed by a daily intravenous dose of 50 to 100 micrograms. Repeated monitoring of TSH and T4 should be performed every 1 to 2 days to evaluate the effect and to titrate the dose of medication. The goal is to improve mental function. Until coexistent adrenal insufficiency is ruled out using a random serum cortisol measurement, 50 to 100 mg every 8 hours of hydrocortisone should be administered. In this case, clinicians used hydrocortisone 100 mg IV every 8 hours. Dexamethasone 2 to 4 mg every 12 hours is an alternative therapy.

The patient’s mental status rapidly worsened despite therapy. In the setting of her hypothyroidism history, this may be myxedema coma or due to the involvement of another organ system. The thyroid supplementation medications and hydrocortisone were continued. A CT head without contrast was normal.

Respiratory

For worsening metabolic acidosis and airway protection, the patient was emergently intubated. Her airway was deemed high risk due to having a large tongue, short neck, and extreme obesity. As the patient’s heart was preload dependent secondary to pericardial effusion, a 1-liter normal saline bolus was started. Norepinephrine was started at a low dose for vasopressor support, and ketamine with low dose Propofol was used for sedation. Ketamine is a sympathomimetic medication and usually does not cause hypotension as all other sedatives do. The patient was ventilated with AC mode of ventilation, tidal volume of 6 ml/kg ideal body weight, flow 70, initial fio2 100 %, rate 26 per minute (to compensate for metabolic acidosis), PEEP of 8.

Cardiovascular

She was determined to be hemodynamically stable with a pericardial effusion. This patient’s cardiac dysfunction was diastolic in nature, as suggested by an ejection fraction of 66% to 70%. The finding of posterior pericardial effusion further supported this conclusion. The posterior nature of this effusion was not amenable to pericardiocentesis. As such, this patient was preload dependent and showed signs of hypotension. The need for crystalloid fluid resuscitation was balanced against the impact increased intravascular volume would have on congestive heart failure and fluid overload status. Thyroid hormone replacement as above should improve hypotension. However, vasopressor agents may be used to maintain vital organ perfusion targeting a mean arterial pressure of greater than 65 mm Hg as needed. BP improved after fluid bolus, and eventually, the norepinephrine was stopped. Serial echocardiograms were obtained to ensure that the patient did not develop tamponade physiology. Total CK was elevated, which was likely due to Hypothyroidism compounded with chronic renal disease.

Infectious Disease

Blood cultures, urine analysis, and sputum cultures were obtained. The patient's white blood cell count was normal. This is likely secondary to her being immunocompromised due to hypothyroidism and diabetes. In part, the pulmonary findings of diffuse edema and bilateral pleural effusions can be explained by cardiac dysfunction. Thoracentesis of pleural fluid was attempted, and the fluid was analyzed for cytology and gram staining to rule out infectious or malignant causes as both a therapeutic and diagnostic measure. Until these results return, broad-spectrum antibiotics are indicated and may be discontinued once the infection is ruled out completely.

Gastrointestinal

Nasogastric tube feedings were started on the patient after intubation. She tolerated feedings well. AST and ALT were mildly elevated, which was thought to be due to hypothyroidism, and as the TSH and free T4 improved, her AST and ALT improved. Eventually, these values became normal once her TSH level was close to 50.

Her baseline creatinine was found to be close to 1.08 in prior medical records. She presented with a creatinine of 1.8 in the emergency department. Since hypothyroidism causes fluid retention in part because thyroid hormone encourages excretion of free water and partly due to decreased lymphatic function in returning fluid to vascular circulation.  Aggressive diuresis was attempted. As a result, her creatinine increased initially but improved on repeated evaluation, and the patient had a new baseline creatinine of 1.6. Overall she had a net change in the fluid status of 10 liters negative by her ten days of admission in the ICU.

Mildly anemic otherwise, WBC and platelet counts were normal. Electrolyte balance should be monitored closely, paying attention to sodium, potassium, chloride, and calcium specifically as these are worsened in both renal failure and myxedema. 

Daily sedation vacations were enacted, and the patient's mental status improved and was much better when TSH was around 20. The bilateral pleural effusions improved with aggressive diuresis. Breathing trials were initiated when the patient's fio2 requirements decreased to 60% and a PEEP of 8. She was eventually extubated onto BiPAP and then high-flow nasal cannula while off of BiPAP. Pericardial fluid remained stable, and no cardiac tamponade pathology developed. As a result, it was determined that a pericardial window was unnecessary. Furthermore, she was not a candidate for pericardiocentesis as the pericardial effusion was located posterior to the heart. Her renal failure improved with improved cardiac function, diuretics, and thyroid hormone replacement.

After extubation patient had speech and swallow evaluations and was able to resume an oral diet. The patient was eventually transferred out of the ICU to the general medical floor and eventually to a rehabilitation unit.

Despite the name myxedema coma, most patients will not present in a coma status. This illness is at its core a severe hypothyroidism crisis that leads to systemic multiorgan failure. Thyroid hormones T3, and to a lesser extent, T4 act directly on a cellular level to upregulate all metabolic processes in the body. Therefore, deficiency of this hormone is characterized by systemic decreased metabolism and decreased glucose utilization along with increased production and storage of osmotically active mucopolysaccharide protein complexes into peripheral tissues resulting in diffuse edema and swelling of tissue. [1]

Myxedema coma is an illness that occurs primarily in females at a rate of 4:1 compared to men. It typically impacts the elderly at the age of greater than 60 years old, and approximately 90% of cases occur during the winter months. Myxedema coma is the product of longstanding unidentified or undertreated hypothyroidism of any etiology. Thyroid hormone is necessary throughout the body and acts as a regulatory hormone that affects many organ systems. [2] In cardiac tissues, myxedema coma manifests as decreased contractility with subsequent reduction in stroke volume and overall cardiac output.  Bradycardia and hypotension are typically present also. Pericardial effusions occur due to the accumulation of mucopolysaccharides in the pericardial sac, which leads to worsened cardiac function and congestive heart failure from diastolic dysfunction. Capillary permeability is also increased throughout the body leading to worsened edema. Electrocardiogram findings may include bradycardia and low-voltage, non-specific ST waveform changes with possible inverted T waves.

Neurologic tissues are impacted in myxedema coma leading to the pathognomonic altered mental status resulting from hypoxia and decreased cerebral blood flow secondary to cardiac dysfunction as above. Additionally, hypothyroidism leads to decreased glucose uptake and utilization in neurological tissue, thus worsening cognitive function.

The pulmonary system typically manifests this disease process through hypoventilation secondary to the central nervous system (CNS) depression of the respiratory drive with blunting of the response to hypoxia and hypercapnia. Additionally, metabolic dysfunction in the muscles of respiration leads to respiratory fatigue and failure, macroglossia from mucopolysaccharide driven edema of the tongue leads to mechanical obstruction of the airway, and obesity hypoventilation syndrome with the decreased respiratory drive as most hypothyroid patients suffer from obesity.

Renal manifestations include decreased glomerular filtration rate from the reduced cardiac output and increased systemic vascular resistance coupled with acute rhabdomyolysis lead to acute kidney injury. In the case of our patient above who has a pre-existing renal disease status post-nephrectomy, this is further worsened.  The net effect is worsened fluid overload status compounding the cardiac dysfunction and edema. [3]

The gastrointestinal tract is marked by mucopolysaccharide-driven edema as well leading to malabsorption of nutrients, gastric ileus, and decreased peristalsis. Ascites is common because of increased capillary permeability in the intestines coupled with coexistent congestive heart failure and congestive hepatic failure. Coagulopathies are common to occur as a result of this hepatic dysfunction.

Evaluation: The diagnosis of myxedema coma, as with all other diseases, is heavily reliant on the history and physical exam. A past medical history including hypothyroidism is highly significant whenever decreased mental status or coma is identified. In the absence of identified hypothyroidism, myxedema coma is a diagnosis of exclusion when all other sources of coma have been ruled out. If myxedema coma is suspected, evaluation of thyroid-stimulating hormone (TSH), free thyroxine (T4), and serum cortisol is warranted. T4 will be extremely low. TSH is variable depending on the etiology of hypothyroidism, with a high TSH indicating primary hypothyroidism and a low or normal TSH indicating secondary etiologies. Cortisol may be low indicating adrenal insufficiency because of hypothyroidism.  [4]

Prognosis: Myxedema coma is a medical emergency. With proper and rapid diagnosis and initiation of therapy, the mortality rate is still as high as 25% to 50%. The most common cause of death is due to respiratory failure. The factors which suggest a poorer prognosis include increased age, persistent hypothermia, bradycardia, low score Glasgow Coma Scale, or multi-organ impairment indicated by high APACHE (Acute Physiology and Chronic Health Evaluation) II score. For these reasons, placement in an intensive care unit with a low threshold for intubation and mechanical ventilation can improve mortality outcomes. [3] [5]

• Pearls of Wisdom
• Not every case of shortness of breath is COPD or congestive heart failure (CHF). While less likely, a history of hypothyroidism should raise suspicion of myxedema coma in a patient with any cognitive changes.
• Myxedema is the great imitator illness that impacts all organ systems. It can easily be mistaken for congestive heart failure, COPD exacerbation, pneumonia, renal injury or failure, or neurological insult.
• Initial steps in therapy include aggressive airway management, thyroid hormone replacement, glucocorticoid therapy, and supportive measures.
• These patients should be monitored in an intensive care environment with continuous telemetry. [6]
• Enhancing Healthcare Team Outcomes

This case demonstrates how all interprofessional healthcare team members need to be involved in arriving at a correct diagnosis, particularly in more challenging cases such as this one. Clinicians, specialists, nurses, pharmacists, laboratory technicians all bear responsibility for carrying out the duties pertaining to their particular discipline and sharing any findings with all team members. An incorrect diagnosis will almost inevitably lead to incorrect treatment, so coordinated activity, open communication, and empowerment to voice concerns are all part of the dynamic that needs to drive such cases so patients will attain the best possible outcomes.

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Case Study of 60 year old female presenting with Shortness of Breath Contributed by Sandeep Sharma, MD

Disclosure: Deepa Rawat declares no relevant financial relationships with ineligible companies.

Disclosure: Sandeep Sharma declares no relevant financial relationships with ineligible companies.

This book is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ), which permits others to distribute the work, provided that the article is not altered or used commercially. You are not required to obtain permission to distribute this article, provided that you credit the author and journal.

• Cite this Page Rawat D, Sharma S. Case Study: 60-Year-Old Female Presenting With Shortness of Breath. [Updated 2023 Feb 20]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-.

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COPD Case Study: Patient Diagnosis and Treatment (2024)

by John Landry, BS, RRT | Updated: Apr 4, 2024

Chronic obstructive pulmonary disease (COPD) is a progressive lung disease that affects millions of people around the world. It is primarily caused by smoking and is characterized by a persistent obstruction of airflow that worsens over time.

COPD can lead to a range of symptoms, including coughing, wheezing, shortness of breath, and chest tightness, which can significantly impact a person’s quality of life.

This case study will review the diagnosis and treatment of an adult patient who presented with signs and symptoms of this condition.

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COPD Clinical Scenario

A 56-year-old male patient is in the ER with increased work of breathing. He felt mildly short of breath after waking this morning but became extremely dyspneic after climbing a few flights of stairs. He is even too short of breath to finish full sentences. His wife is present in the room and revealed that the patient has a history of liver failure, is allergic to penicillin, and has a 15-pack-year smoking history. She also stated that he builds cabinets for a living and is constantly required to work around a lot of fine dust and debris.

Physical Findings

On physical examination, the patient showed the following signs and symptoms:

• His pupils are equal and reactive to light.
• He is alert and oriented.
• He is breathing through pursed lips.
• His trachea is positioned in the midline, and no jugular venous distention is present.

Vital Signs

• Heart rate: 92 beats/min
• Respiratory rate: 22 breaths/min

Chest Assessment

• He has a larger-than-normal anterior-posterior chest diameter.
• He demonstrates bilateral chest expansion.
• He demonstrates a prolonged expiratory phase and diminished breath sounds during auscultation.
• He is showing signs of subcostal retractions.
• Chest palpation reveals no tactile fremitus.
• Chest percussion reveals increased resonance.
• His abdomen is soft and tender.
• No distention is present.

Extremities

• His capillary refill time is two seconds.
• Digital clubbing is present in his fingertips.
• There are no signs of pedal edema.
• His skin appears to have a yellow tint.

Lab and Radiology Results

• ABG results: pH 7.35 mmHg, PaCO2 59 mmHg, HCO3 30 mEq/L, and PaO2 64 mmHg.
• Chest x-ray: Flat diaphragm, increased retrosternal space, dark lung fields, slight hypertrophy of the right ventricle, and a narrow heart.
• Blood work: RBC 6.5 mill/m3, Hb 19 g/100 mL, and Hct 57%.

Based on the information given, the patient likely has chronic obstructive pulmonary disease (COPD) .

The key findings that point to this diagnosis include:

• Barrel chest
• A long expiratory time
• Diminished breath sounds
• Use of accessory muscles while breathing
• Digital clubbing
• Pursed lip breathing
• History of smoking
• Exposure to dust from work

What Findings are Relevant to the Patient’s COPD Diagnosis?

The patient’s chest x-ray showed classic signs of chronic COPD, which include hyperexpansion, dark lung fields, and a narrow heart.

This patient does not have a history of cor pulmonale ; however, the findings revealed hypertrophy of the right ventricle. This is something that should be further investigated as right-sided heart failure is common in patients with COPD.

The lab values that suggest the patient has COPD include increased RBC, Hct, and Hb levels, which are signs of chronic hypoxemia.

Furthermore, the patient’s ABG results indicate COPD is present because the interpretation reveals compensated respiratory acidosis with mild hypoxemia. Compensated blood gases indicate an issue that has been present for an extended period of time.

What Tests Could Further Support This Diagnosis?

A series of pulmonary function tests (PFT) would be useful for assessing the patient’s lung volumes and capacities. This would help confirm the diagnosis of COPD and inform you of the severity.

Note: COPD patients typically have an FEV1/FVC ratio of < 70%, with an FEV1 that is < 80%.

The initial treatment for this patient should involve the administration of low-flow oxygen to treat or prevent hypoxemia .

It’s acceptable to start with a nasal cannula at 1-2 L/min. However, it’s often recommended to use an air-entrainment mask on COPD patients in order to provide an exact FiO2.

Either way, you should start with the lowest possible FiO2 that can maintain adequate oxygenation and titrate based on the patient’s response.

Example: Let’s say you start the patient with an FiO2 of 28% via air-entrainment mask but increase it to 32% due to no improvement. The SpO2 originally was 84% but now has decreased to 80%, and his retractions are worsening. This patient is sitting in the tripod position and continues to demonstrate pursed-lip breathing. Another blood gas was collected, and the results show a PaCO2 of 65 mmHg and a PaO2 of 59 mmHg.

What Do You Recommend?

The patient has an increased work of breathing, and their condition is clearly getting worse. The latest ABG results confirmed this with an increased PaCO2 and a PaO2 that is decreasing.

This indicates that the patient needs further assistance with both ventilation and oxygenation .

Note: In general, mechanical ventilation should be avoided in patients with COPD (if possible) because they are often difficult to wean from the machine.

Therefore, at this time, the most appropriate treatment method is noninvasive ventilation (e.g., BiPAP).

Initial BiPAP Settings

In general, the most commonly recommended initial BiPAP settings for an adult patient include this following:

• IPAP: 8–12 cmH2O
• EPAP: 5–8 cmH2O
• Rate: 10–12 breaths/min
• FiO2: Whatever they were previously on

For example, let’s say you initiate BiPAP with an IPAP of 10 cmH20, an EPAP of 5 cmH2O, a rate of 12, and an FiO2 of 32% (since that is what he was previously getting).

After 30 minutes on the machine, the physician requested another ABG to be drawn, which revealed acute respiratory acidosis with mild hypoxemia.

What Adjustments to BiPAP Settings Would You Recommend?

The latest ABG results indicate that two parameters must be corrected:

• Increased PaCO2
• Decreased PaO2

You can address the PaO2 by increasing either the FiO2 or EPAP setting. EPAP functions as PEEP, which is effective in increasing oxygenation.

The PaCO2 can be lowered by increasing the IPAP setting. By doing so, it helps to increase the patient’s tidal volume, which increased their expired CO2.

Note: In general, when making adjustments to a patient’s BiPAP settings, it’s acceptable to increase the pressure in increments of 2 cmH2O and the FiO2 setting in 5% increments.

Oxygenation

To improve the patient’s oxygenation , you can increase the EPAP setting to 7 cmH2O. This would decrease the pressure support by 2 cmH2O because it’s essentially the difference between the IPAP and EPAP.

Therefore, if you increase the EPAP, you must also increase the IPAP by the same amount to maintain the same pressure support level.

Ventilation

However, this patient also has an increased PaCO2 , which means that you must increase the IPAP setting to blow off more CO2. Therefore, you can adjust the pressure settings on the machine as follows:

• IPAP: 14 cmH2O
• EPAP: 7 cmH2O

After making these changes and performing an assessment , you can see that the patient’s condition is improving.

Two days later, the patient has been successfully weaned off the BiPAP machine and no longer needs oxygen support. He is now ready to be discharged.

The doctor wants you to recommend home therapy and treatment modalities that could benefit this patient.

What Home Therapy Would You Recommend?

You can recommend home oxygen therapy if the patient’s PaO2 drops below 55 mmHg or their SpO2 drops below 88% more than twice in a three-week period.

Remember: You must use a conservative approach when administering oxygen to a patient with COPD.

Pharmacology

You may also consider the following pharmacological agents:

• Short-acting bronchodilators (e.g., Albuterol)
• Long-acting bronchodilators (e.g., Formoterol)
• Anticholinergic agents (e.g., Ipratropium bromide)
• Inhaled corticosteroids (e.g., Budesonide)
• Methylxanthine agents (e.g., Theophylline)

In addition, education on smoking cessation is also important for patients who smoke. Nicotine replacement therapy may also be indicated.

In some cases, bronchial hygiene therapy should be recommended to help with secretion clearance (e.g., positive expiratory pressure (PEP) therapy).

It’s also important to instruct the patient to stay active, maintain a healthy diet, avoid infections, and get an annual flu vaccine. Lastly, some COPD patients may benefit from cardiopulmonary rehabilitation .

By taking all of these factors into consideration, you can better manage this patient’s COPD and improve their quality of life.

Final Thoughts

There are two key points to remember when treating a patient with COPD. First, you must always be mindful of the amount of oxygen being delivered to keep the FiO2 as low as possible.

Second, you should use noninvasive ventilation, if possible, before performing intubation and conventional mechanical ventilation . Too much oxygen can knock out the patient’s drive to breathe, and once intubated, these patients can be difficult to wean from the ventilator .

Furthermore, once the patient is ready to be discharged, you must ensure that you are sending them home with the proper medications and home treatments to avoid readmission.

Written by:

John Landry is a registered respiratory therapist from Memphis, TN, and has a bachelor's degree in kinesiology. He enjoys using evidence-based research to help others breathe easier and live a healthier life.

• Faarc, Kacmarek Robert PhD Rrt, et al. Egan’s Fundamentals of Respiratory Care. 12th ed., Mosby, 2020.
• Chang, David. Clinical Application of Mechanical Ventilation . 4th ed., Cengage Learning, 2013.
• Rrt, Cairo J. PhD. Pilbeam’s Mechanical Ventilation: Physiological and Clinical Applications. 7th ed., Mosby, 2019.
• Faarc, Gardenhire Douglas EdD Rrt-Nps. Rau’s Respiratory Care Pharmacology. 10th ed., Mosby, 2019.
• Faarc, Heuer Al PhD Mba Rrt Rpft. Wilkins’ Clinical Assessment in Respiratory Care. 8th ed., Mosby, 2017.
• Rrt, Des Terry Jardins MEd, and Burton George Md Facp Fccp Faarc. Clinical Manifestations and Assessment of Respiratory Disease. 8th ed., Mosby, 2019.

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STEVE FORD, EDITOR

• You are here: COPD

Diagnosis and management of COPD: a case study

04 May, 2020

This case study explains the symptoms, causes, pathophysiology, diagnosis and management of chronic obstructive pulmonary disease

This article uses a case study to discuss the symptoms, causes and management of chronic obstructive pulmonary disease, describing the patient’s associated pathophysiology. Diagnosis involves spirometry testing to measure the volume of air that can be exhaled; it is often performed after administering a short-acting beta-agonist. Management of chronic obstructive pulmonary disease involves lifestyle interventions – vaccinations, smoking cessation and pulmonary rehabilitation – pharmacological interventions and self-management.

Citation: Price D, Williams N (2020) Diagnosis and management of COPD: a case study. Nursing Times [online]; 116: 6, 36-38.

Authors: Debbie Price is lead practice nurse, Llandrindod Wells Medical Practice; Nikki Williams is associate professor of respiratory and sleep physiology, Swansea University.

• This article has been double-blind peer reviewed
• Scroll down to read the article or download a print-friendly PDF here (if the PDF fails to fully download please try again using a different browser)

Introduction

The term chronic obstructive pulmonary disease (COPD) is used to describe a number of conditions, including chronic bronchitis and emphysema. Although common, preventable and treatable, COPD was projected to become the third leading cause of death globally by 2020 (Lozano et al, 2012). In the UK in 2012, approximately 30,000 people died of COPD – 5.3% of the total number of deaths. By 2016, information published by the World Health Organization indicated that Lozano et al (2012)’s projection had already come true.

People with COPD experience persistent respiratory symptoms and airflow limitation that can be due to airway or alveolar abnormalities, caused by significant exposure to noxious particles or gases, commonly from tobacco smoking. The projected level of disease burden poses a major public-health challenge and primary care nurses can be pivotal in the early identification, assessment and management of COPD (Hooper et al, 2012).

Grace Parker (the patient’s name has been changed) attends a nurse-led COPD clinic for routine reviews. A widowed, 60-year-old, retired post office clerk, her main complaint is breathlessness after moderate exertion. She scored 3 on the modified Medical Research Council (mMRC) scale (Fletcher et al, 1959), indicating she is unable to walk more than 100 yards without stopping due to breathlessness. Ms Parker also has a cough that produces yellow sputum (particularly in the mornings) and an intermittent wheeze. Her symptoms have worsened over the last six months. She feels anxious leaving the house alone because of her breathlessness and reduced exercise tolerance, and scored 26 on the COPD Assessment Test (CAT, catestonline.org), indicating a high level of impact.

Ms Parker smokes 10 cigarettes a day and has a pack-year score of 29. She has not experienced any haemoptysis (coughing up blood) or chest pain, and her weight is stable; a body mass index of 40kg/m 2 means she is classified as obese. She has had three exacerbations of COPD in the previous 12 months, each managed in the community with antibiotics, steroids and salbutamol.

Ms Parker was diagnosed with COPD five years ago. Using Epstein et al’s (2008) guidelines, a nurse took a history from her, which provided 80% of the information needed for a COPD diagnosis; it was then confirmed following spirometry testing as per National Institute for Health and Care Excellence (2018) guidance.

The nurse used the Calgary-Cambridge consultation model, as it combines the pathological description of COPD with the patient’s subjective experience of the illness (Silverman et al, 2013). Effective communication skills are essential in building a trusting therapeutic relationship, as the quality of the relationship between Ms Parker and the nurse will have a direct impact on the effectiveness of clinical outcomes (Fawcett and Rhynas, 2012).

In a national clinical audit report, Baxter et al (2016) identified inaccurate history taking and inadequately performed spirometry as important factors in the inaccurate diagnosis of COPD on general practice COPD registers; only 52.1% of patients included in the report had received quality-assured spirometry.

Pathophysiology of COPD

Knowing the pathophysiology of COPD allowed the nurse to recognise and understand the physical symptoms and provide effective care (Mitchell, 2015). Continued exposure to tobacco smoke is the likely cause of the damage to Ms Parker’s small airways, causing her cough and increased sputum production. She could also have chronic inflammation, resulting in airway smooth-muscle contraction, sluggish ciliary movement, hypertrophy and hyperplasia of mucus-secreting goblet cells, as well as release of inflammatory mediators (Mitchell, 2015).

Ms Parker may also have emphysema, which leads to damaged parenchyma (alveoli and structures involved in gas exchange) and loss of alveolar attachments (elastic connective fibres). This causes gas trapping, dynamic hyperinflation, decreased expiratory flow rates and airway collapse, particularly during expiration (Kaufman, 2013). Ms Parker also displayed pursed-lip breathing; this is a technique used to lengthen the expiratory time and improve gaseous exchange, and is a sign of dynamic hyperinflation (Douglas et al, 2013).

In a healthy lung, the destruction and repair of alveolar tissue depends on proteases and antiproteases, mainly released by neutrophils and macrophages. Inhaling cigarette smoke disrupts the usually delicately balanced activity of these enzymes, resulting in the parenchymal damage and small airways (with a lumen of <2mm in diameter) airways disease that is characteristic of emphysema. The severity of parenchymal damage or small airways disease varies, with no pattern related to disease progression (Global Initiative for Chronic Obstructive Lung Disease, 2018).

Ms Parker also had a wheeze, heard through a stethoscope as a continuous whistling sound, which arises from turbulent airflow through constricted airway smooth muscle, a process noted by Mitchell (2015). The wheeze, her 29 pack-year score, exertional breathlessness, cough, sputum production and tiredness, and the findings from her physical examination, were consistent with a diagnosis of COPD (GOLD, 2018; NICE, 2018).

Spirometry is a tool used to identify airflow obstruction but does not identify the cause. Commonly measured parameters are:

• Forced expiratory volume – the volume of air that can be exhaled – in one second (FEV1), starting from a maximal inspiration (in litres);
• Forced vital capacity (FVC) – the total volume of air that can be forcibly exhaled – at timed intervals, starting from a maximal inspiration (in litres).

Calculating the FEV1 as a percentage of the FVC gives the forced expiratory ratio (FEV1/FVC). This provides an index of airflow obstruction; the lower the ratio, the greater the degree of obstruction. In the absence of respiratory disease, FEV1 should be ≥70% of FVC. An FEV1/FVC of <70% is commonly used to denote airflow obstruction (Moore, 2012).

As they are time dependent, FEV1 and FEV1/FVC are reduced in diseases that cause airways to narrow and expiration to slow. FVC, however, is not time dependent: with enough expiratory time, a person can usually exhale to their full FVC. Lung function parameters vary depending on age, height, gender and ethnicity, so the degree of FEV1 and FVC impairment is calculated by comparing a person’s recorded values with predicted values. A recorded value of >80% of the predicted value has been considered ‘normal’ for spirometry parameters but the lower limit of normal – equal to the fifth percentile of a healthy, non-smoking population – based on more robust statistical models is increasingly being used (Cooper et al, 2017).

A reversibility test involves performing spirometry before and after administering a short-acting beta-agonist (SABA) such as salbutamol; the test is used to distinguish between reversible and fixed airflow obstruction. For symptomatic asthma, airflow obstruction due to airway smooth-muscle contraction is reversible: administering a SABA results in smooth-muscle relaxation and improved airflow (Lumb, 2016). However, COPD is associated with fixed airflow obstruction, resulting from neutrophil-driven inflammatory changes, excess mucus secretion and disrupted alveolar attachments, as opposed to airway smooth-muscle contraction.

Administering a SABA for COPD does not usually produce bronchodilation to the extent seen in someone with asthma: a person with asthma may demonstrate significant improvement in FEV1 (of >400ml) after having a SABA, but this may not change in someone with COPD (NICE, 2018). However, a negative response does not rule out therapeutic benefit from long-term SABA use (Marín et al, 2014).

NICE (2018) and GOLD (2018) guidelines advocate performing spirometry after administering a bronchodilator to diagnose COPD. Both suggest a FEV1/FVC of <70% in a person with respiratory symptoms supports a diagnosis of COPD, and both grade the severity of the condition using the predicted FEV1. Ms Parker’s spirometry results showed an FEV1/FVC of 56% and a predicted FEV1 of 57%, with no significant improvement in these values with a reversibility test.

GOLD (2018) guidance is widely accepted and used internationally. However, it was developed by medical practitioners with a medicalised approach, so there is potential for a bias towards pharmacological management of COPD. NICE (2018) guidance may be more useful for practice nurses, as it was developed by a multidisciplinary team using evidence from systematic reviews or meta-analyses of randomised controlled trials, providing a holistic approach. NICE guidance may be outdated on publication, but regular reviews are performed and published online.

NHS England (2016) holds a national register of all health professionals certified in spirometry. It was set up to raise spirometry standards across the country.

Assessment and management

The goals of assessing and managing Ms Parker’s COPD are to:

• Review and determine the level of airflow obstruction;
• Assess the disease’s impact on her life;
• Risk assess future disease progression and exacerbations;
• Recommend pharmacological and therapeutic management.

GOLD’s (2018) ABCD assessment tool (Fig 1) grades COPD severity using spirometry results, number of exacerbations, CAT score and mMRC score, and can be used to support evidence-based pharmacological management of COPD.

When Ms Parker was diagnosed, her predicted FEV1 of 57% categorised her as GOLD grade 2, and her mMRC score, CAT score and exacerbation history placed her in group D. The mMRC scale only measures breathlessness, but the CAT also assesses the impact COPD has on her life, meaning consecutive CAT scores can be compared, providing valuable information for follow-up and management (Zhao, et al, 2014).

After assessing the level of disease burden,  Ms Parker was then provided with education for self-management and lifestyle interventions.

Lifestyle interventions

Smoking cessation.

Cessation of smoking alongside support and pharmacotherapy is the second-most cost-effective intervention for COPD, when compared with most other pharmacological interventions (BTS and PCRS UK, 2012). Smoking cessation:

• Slows the progression of COPD;
• Improves lung function;
• Improves survival rates;
• Reduces the risk of lung cancer;
• Reduces the risk of coronary heart disease risk (Qureshi et al, 2014).

Ms Parker accepted a referral to an All Wales Smoking Cessation Service adviser based at her GP surgery. The adviser used the internationally accepted ‘five As’ approach:

• Ask – record the number of cigarettes the individual smokes per day or week, and the year they started smoking;
• Advise – urge them to quit. Advice should be clear and personalised;
• Assess – determine their willingness and confidence to attempt to quit. Note the state of change;
• Assist – help them to quit. Provide behavioural support and recommend or prescribe pharmacological aids. If they are not ready to quit, promote motivation for a future attempt;
• Arrange – book a follow-up appointment within one week or, if appropriate, refer them to a specialist cessation service for intensive support. Document the intervention.

NICE (2013) guidance recommends that this be used at every opportunity. Stead et al (2016) suggested that a combination of counselling and pharmacotherapy have proven to be the most effective strategy.

Pulmonary rehabilitation

Ms Parker’s positive response to smoking cessation provided an ideal opportunity to offer her pulmonary rehabilitation (PR)  – as indicated by Johnson et al (2014), changing one behaviour significantly increases a person’s chance of changing another.

PR – a supervised programme including exercise training, health education and breathing techniques – is an evidence-based, comprehensive, multidisciplinary intervention that:

• Improves exercise tolerance;
• Reduces dyspnoea;
• Promotes weight loss (Bolton et al, 2013).

These improvements often lead to an improved quality of life (Sciriha et al, 2015).

Most relevant for Ms Parker, PR has been shown to reduce anxiety and depression, which are linked to an increased risk of exacerbations and poorer health status (Miller and Davenport, 2015). People most at risk of future exacerbations are those who already experience them (Agusti et al, 2010), as in Ms Parker’s case. Patients who have frequent exacerbations have a lower quality of life, quicker progression of disease, reduced mobility and more-rapid decline in lung function than those who do not (Donaldson et al, 2002).

“COPD is a major public-health challenge; nurses can be pivotal in early identification, assessment and management”

Pharmacological interventions

Ms Parker has been prescribed inhaled salbutamol as required; this is a SABA that mediates the increase of cyclic adenosine monophosphate in airway smooth-muscle cells, leading to muscle relaxation and bronchodilation. SABAs facilitate lung emptying by dilatating the small airways, reversing dynamic hyperinflation of the lungs (Thomas et al, 2013). Ms Parker also uses a long-acting muscarinic antagonist (LAMA) inhaler, which works by blocking the bronchoconstrictor effects of acetylcholine on M3 muscarinic receptors in airway smooth muscle; release of acetylcholine by the parasympathetic nerves in the airways results in increased airway tone with reduced diameter.

At a routine review, Ms Parker admitted to only using the SABA and LAMA inhalers, despite also being prescribed a combined inhaled corticosteroid and long-acting beta 2 -agonist (ICS/LABA) inhaler. She was unaware that ICS/LABA inhalers are preferred over SABA inhalers, as they:

• Last for 12 hours;
• Improve the symptoms of breathlessness;
• Increase exercise tolerance;
• Can reduce the frequency of exacerbations (Agusti et al, 2010).

However, moderate-quality evidence shows that ICS/LABA combinations, particularly fluticasone, cause an increased risk of pneumonia (Suissa et al, 2013; Nannini et al, 2007). Inhaler choice should, therefore, be individualised, based on symptoms, delivery technique, patient education and compliance.

It is essential to teach and assess inhaler technique at every review (NICE, 2011). Ms Parker uses both a metered-dose inhaler and a dry-powder inhaler; an in-check device is used to assess her inspiratory effort, as different inhaler types require different inhalation speeds. Braido et al (2016) estimated that 50% of patients have poor inhaler technique, which may be due to health professionals lacking the confidence and capability to teach and assess their use.

Patients may also not have the dexterity, capacity to learn or vision required to use the inhaler. Online resources are available from, for example, RightBreathe (rightbreathe.com), British Lung Foundation (blf.org.uk). Ms Parker’s adherence could be improved through once-daily inhalers, as indicated by results from a study by Lipson et al (2017). Any change in her inhaler would be monitored as per local policy.

Vaccinations

Ms Parker keeps up to date with her seasonal influenza and pneumococcus vaccinations. This is in line with the low-cost, highest-benefit strategy identified by the British Thoracic Society and Primary Care Respiratory Society UK’s (2012) study, which was conducted to inform interventions for patients with COPD and their relative quality-adjusted life years. Influenza vaccinations have been shown to decrease the risk of lower respiratory tract infections and concurrent COPD exacerbations (Walters et al, 2017; Department of Health, 2011; Poole et al, 2006).

Self-management

Ms Parker was given a self-management plan that included:

• Information on how to monitor her symptoms;
• A rescue pack of antibiotics, steroids and salbutamol;
• A traffic-light system demonstrating when, and how, to commence treatment or seek medical help.

Self-management plans and rescue packs have been shown to reduce symptoms of an exacerbation (Baxter et al, 2016), allowing patients to be cared for in the community rather than in a hospital setting and increasing patient satisfaction (Fletcher and Dahl, 2013).

Improving Ms Parker’s adherence to once-daily inhalers and supporting her to self-manage and make the necessary lifestyle changes, should improve her symptoms and result in fewer exacerbations.

The earlier a diagnosis of COPD is made, the greater the chances of reducing lung damage through interventions such as smoking cessation, lifestyle modifications and treatment, if required (Price et al, 2011).

• Chronic obstructive pulmonary disease is a progressive respiratory condition, projected to become the third leading cause of death globally
• Diagnosis involves taking a patient history and performing spirometry testing
• Spirometry identifies airflow obstruction by measuring the volume of air that can be exhaled
• Chronic obstructive pulmonary disease is managed with lifestyle and pharmacological interventions, as well as self-management

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End-Stage COPD Symptoms and Prognosis

• Life Expectancy

End-stage chronic obstructive pulmonary disease (COPD) refers to being in the final stages of the disease. At this stage, you can expect to experience significant shortness of breath even when resting. Because of the degree of lung damage at this stage, you are at high risk for lung infections and respiratory failure .

You might associate the term "end-stage" with imminent death or grave disability that's leading up to death. Certainly, there is a higher risk of death at this stage, but you can survive for years with end-stage COPD. 

This article defines end-stage COPD and explains how it is diagnosed. It presents treatment options commonly used in end-stage COPD and tips for coping with end-stage concerns.

Illustration by Emily Roberts for Verywell Health

With advanced COPD, you can have symptoms all the time or almost all the time. And the effects of your disease at the end-stage will be so advanced that they will undeniably affect your day-to-day activities.

Symptoms you can experience with end-stage COPD include:

• Chronic cough and phlegm production
• Severe shortness of breath even when at rest
• Difficulty eating
• Difficulty communicating due to shortness of breath
• Limited ability to get around
• Confusion or dizziness
• Difficulty sleeping

How Is End-Stage COPD Diagnosed?

By definition, "end-stage" refers to the last phase in the course of a progressive disease. There are criteria that help define this stage.

According to the Global Initiative for Obstructive Lung Disease (GOLD), there are four stages of COPD :

• Stage I is mild COPD. Lung function is starting to decline but you may not notice it.
• Stage II is moderate COPD. Symptoms progress, with shortness of breath developing upon exertion.
• Stage III is severe COPD. Shortness of breath becomes worse and  COPD exacerbations  are common.
• Stage IV is very severe COPD. Quality of life is gravely impaired. COPD exacerbation can be life-threatening.

Each stage is defined according to the spirometry measurement of FEV1  (the volume of air breathed out in the first second after a forced exhalation). End-stage COPD is considered stage IV, or very severe COPD with an FEV1 of less than or equal to 30%.

Other Tests to Measure COPD Stages

The Global Initiative for Obstructive Lung Disease (GOLD) defines four stages of COPD, with Stage IV as its end stage. It was updated in 2017. Other systems to evaluate COPD include:

• ADO scores, which measure age, dyspnea (shortness of breath), and obstruction
• DOSE scores, used to measure dyspnea, obstruction, smoking, and exacerbation
• BODE assessment for body mass index (BMI), obstruction, dyspnea, and exercise 
• Spirometry, often used to measure lung function

A 12-year study of 490 people in Sweden, published in 2021, looked at these methods and found the ADO and the lung function assessments were most accurate in predicting life expectancy and mortality.

How Long Can You Live With End-Stage COPD?

Research suggests that people diagnosed with COPD lose an average of six years in life expectancy when compared with their counterparts who don't have COPD. But other conditions, such as heart disease, actually accounted for two-thirds of these deaths.

The individual prognosis for someone with end-stage COPD will depend on a number of factors that influence COPD life expectancy . They include:

• Underlying health conditions
• Smoking status
• Quality and compliance with treatment
• Fitness level
• Nutritional health

Some people in end-stage COPD are still able to function reasonably well with few limitations. On the other hand, there are also many people at this stage who are very sick. You also can develop complications of lung disease that include:

• Heart failure
• Lower extremity edema (swelling of your legs)

With end-stage COPD, you are likely to have limitations in your activity levels, which leads to a risk of blood clots , obesity, and pressure sores .

Often, treatment options haven't been exhausted when diagnosed with end-stage COPD. There may be aspects of your health that can be managed to help make you feel more comfortable and to avoid complications of your pulmonary condition.

For example, you are likely to have low oxygen saturation levels (needed oxygen in your blood) and you will probably be prescribed supplemental oxygen. If you take a break from your oxygen supplementation, you may notice your symptoms worsening.

As the severity of your disease advances, the focus of your treatment may begin to shift to palliative care to relieve your COPD symptoms .

If you're facing a diagnosis of end-stage COPD, your healthcare provider may prescribe the following treatments:

Pulmonary Rehabilitation

Pulmonary rehabilitation has been found to be beneficial for people with COPD at all stages of the disease. A 2017 study found that for people with severe COPD, pulmonary rehabilitation improved symptoms for 92% of the participants and resulted in 54% fewer days of hospitalization.

Nutritional Counseling

Nutrition counseling can help with  malnutrition , a common complication in end-stage COPD that increases the risk of death. A counselor who specializes in caring for people with COPD can also help with tips that make eating easier and more enjoyable amidst shortness of breath.

Bronchodilators

American Thoracic Society guidelines recommend that people with moderate or severe COPD who experience shortness of breath and/or exercise intolerance receive a combination of two different types of long-acting bronchodilators rather than a single long-acting bronchodilator alone.

This includes a long-acting beta-agonist (LABA) medication as well as a long-acting anticholinergic/muscarinic antagonist (LAMA). Some combination inhalers include both of these categories of medication in a single inhaler. Short-acting bronchodilators may also be used for symptoms.

Glucocorticoids

Glucocorticoids (steroids) may be used either via inhalation, or in an oral or intravenous form, and guidelines for their use have recently changed.

Oral glucocorticoids (such as prednisone ) were once widely prescribed but should, in general, be avoided on a continual basis. (They may still be needed for exacerbations or during hospitalizations.) These medications were not found to affect shortness of breath, the risk of exacerbations, or survival, but did lead to a number of side effects such as high blood pressure and infection.

Inhaled glucocorticoids may or may not be recommended. While they reduce the risk of exacerbations, they also increase the risk a person will develop pneumonia. They are likely helpful for people who also have asthma or who have one or more COPD exacerbations each year.

Supplemental Oxygen

Oxygen reduces breathlessness caused by activity and at rest. Not only can this improve symptoms, but oxygen may allow some people to engage in other activities (such as rehabilitation and physical activity) that improve quality of life as well.

In the past, opiates were often avoided as some studies showed they may have serious side effects and may not benefit everyone. The latest guidelines, however, encourage the use of opiate medications for people who continue to have significant shortness of breath despite maximizing other therapies.

This recommendation came about due to studies showing these medications were beneficial in improving quality of life, while not leading to an increased risk of falls/accidents or overdoses.

Noninvasive Positive Pressure Ventilation (NIPPV)

Noninvasive ventilation may lessen carbon dioxide retention and improve shortness of breath, but it's not routinely recommended.

Various surgical procedures may be needed in treating end-stage COPD in some people. These procedures can include:

• Bullectomy , a surgery to reduce the amount of air trapped in the lungs due to emphysema or bronchiectasis
• Lung volume reduction surgery in emphysema, to remove the most damaged lung tissue and allow for improved breathing overall
• Bronchoscopic lung volume reduction (BLVR), with valves placed to assist with air flow in people with certain features of severe COPD

Lung transplant , in eligible candidates with severe COPD, also may be a surgical treatment option.

Complementary Therapies

Complementary and alternative therapy such as relaxation and visualization techniques, therapeutic massage, and music therapy with live instruments or recorded music can help soothe symptoms like shortness of breath.

Living with end-stage COPD can make you feel scared and isolated. Getting psychological and social support is an important aspect of coping with the condition.

Lifestyle Changes

Even when you have already developed very advanced COPD, there are several lifestyle changes that you can incorporate to have the best outcome possible:

• Quit smoking: Smoking cessation  is vital because smoking continues to cause lung changes at the late stages of COPD.
• Exercise: After a diagnosis of COPD , exercise has a great impact on your life with some studies suggesting its ability to reverse the loss of life expectancy. Consider a daily exercise program; even light walking (with your oxygen supply) several times per week can be beneficial.
• Eat healthfully: Good nutrition is essential because COPD causes your body to consume a lot of calories and can lead to malnutrition. Maintaining your nutrition will give you the energy you need to breathe and fight infection.
• Stay positive: Staying positive in the midst of a chronic illness diagnosis can be difficult, but can have a tremendous impact. It's all about developing some new coping mechanisms that will fit into your lifestyle.
• Review your medications with your healthcare provider frequently: Make sure you receive the optimal combination of medications to maintain or even improve your quality of life. Research is ongoing, and guidelines as to the most effective therapies can change.

End-of-Life Issues

If your healthcare providers have discussed the chance that death is approaching due to your COPD, it's time to consider how you will manage end-of-life issues.

Whether you or a loved one is taking charge of the decisions at this point, deciding how you will seek help during the end-of-life stage can make the process a bit easier for everyone involved. For example, you and your family may want to consider enlisting the help of  hospice  to guide you through this time.

When you have been diagnosed with late-stage COPD, talk to your healthcare team and loved ones about your values and beliefs to help ensure that any end-of-life care is consistent with your wishes. For resources to help with planning end-of-life care, visit the National Healthcare Decisions Day website .

Advanced directives are documents that allow you to explain your wishes regarding end-of-life care. Your loved ones will then know what you want in terms of issues like resuscitation, feeding tubes, and ventilator support if you are unable to express your wishes at a later time.

Symptom management is one of the most important aspects of end-of-life care because COPD symptoms often worsen in the final days—most notably, dyspnea and  cough , pain, anxiety and depression , confusion, anorexia, and muscle wasting known as  cachexia .

The end of life is a time of sadness and deep reflection for you and your loved ones. Remember that simple gestures like holding your loved one's hand and being present can provide immense comfort. 

End-stage COPD is diagnosed by a healthcare provider who evaluates your lung function. Symptoms usually include increasing shortness of breath, fatigue and difficulty with mobility, trouble sleeping, and chronic cough.

While COPD is a progressive disease, there are a number of treatments available to keep you as healthy as possible for as long as possible. Lifestyle changes, including exercise and smoking cessation, also will help as you work with your care team to develop a treatment plan.

On average, a person with COPD will lose six years of life expectancy but may have many years yet to live. Your prognosis will depend on many factors and there is no way to predict exactly how long you will live. Be sure to make decisions about your health and treatment options with your providers to ensure your best quality of life.

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Shu CC, Lee JH, Tsai MK, Su TC, Wen CP. The ability of physical activity in reducing mortality risks and cardiovascular loading and in extending life expectancy in patients with COPD . Sci Rep . 2021 Nov 4;11(1):21674. doi:10.1038/s41598-021-00728-2.

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Leard LE, Holm AM, Valapour M, Glanville AR, Attawar S, Aversa M, et al. Consensus document for the selection of lung transplant candidates: An update from the International Society for Heart and Lung Transplantation . J Heart Lung Transplant . 2021 Nov;40(11):1349-1379. doi:10.1016/j.healun.2021.07.005.

Roos AB, Sandén C, Mori M, Bjermer L, Stampfli MR, Erjefält JS. IL-17A Is elevated in end-stage chronic obstructive pulmonary disease and contributes to cigarette smoke-induced lymphoid neogenesis . Am J Respir Crit Care Med . 2015;191(11):1232-41.doi.10.1164/rccm.201410-1861OC

Tavares N, Jarrett N, Hunt K, Wilkinson T. Palliative and end-of-life care conversations in COPD: a systematic literature review . ERJ Open Research . 2017 Apr 1;3(2):00068-2016.doi:10.1183/23120541.00068-2016

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By Deborah Leader, RN  Deborah Leader RN, PHN, is a registered nurse and medical writer who focuses on COPD.

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Chronic obstructive pulmonary disease: Scenario: End-stage chronic obstructive pulmonary disease

Last revised in December 2023

Covers the management of people with COPD that is very severe, unresponsive to usual medical treatment, and associated with a likely life expectancy of less than 6–12 months.

Scenario: End-stage chronic obstructive pulmonary disease

From age 16 years onwards.

When should I suspect a person has end-stage COPD?

• There is no commonly accepted definition of “end-stage COPD” and prediction of life expectancy in COPD is difficult. In most people, disease progression will follow a course of gradual decline punctuated by acute exacerbations which increase the risk of dying.
• Frequency and severity of exacerbations.
• Hospitalization during an exacerbation.
• Poor lung function on spirometry.
• Low body mass index.
• Comorbidities such as cardiovascular disease and malignancy.
• Tools, such as those from the  Gold Standards Framework  are available help healthcare professionals identify people who are likely to be approaching the end of their life.

Basis for recommendation

The information on end-stage COPD is based on clinical guidelines COPD-X: concise guide for primary care [ Lung Foundation Australia, 2017 ] and Global initiative for chronic obstructive lung disease (GOLD). Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. 2019 repor t [ GOLD, 2019 ] and expert opinion in articles [ Bloom, 2018 ; Rothnie, 2018 ].

• The National Institute for Health and Care Excellence (NICE) clinical guideline on Chronic obstructive pulmonary disease in over 16s: diagnosis and management [ NICE, 2019a ] does not provide an explicit definition of end-stage COPD.

How should I manage a person with end-stage COPD?

• For people with end-stage COPD, the focus is on palliative care to relieve symptoms and improve quality of life.
• Choosing the right time to discuss prognosis and the person’s views on care can be difficult. However, early discussion and good advance palliative care planning is important in reducing anxiety for the person and their family/carer(s) and ensuring that care is consistent with wishes.
• Advance care plans should be reviewed whenever there is a clinical event, deterioration, or change in social circumstances (for example a move into supported care).
• Coordinate care with a respiratory nurse specialist, district nurse, palliative care team, and social services as appropriate.
• Discuss simple measures (such keeping the room cool, improving air circulation with a fan or open window, and relaxation and breathing techniques) to help relieve breathlessness.
• Consider the need for drug treatments (such as opiates) and oxygen.
• For more information, see the CKS topic on Palliative care - dyspnoea .
• Cough — for information, see the CKS topic on Palliative care - cough .
• Secretions — for information, see the CKS topic on Palliative care - secretions .
• Pain — for information see the CKS topic on Palliative cancer care - pain .
• Insomnia — for information, see the CKS topic on Insomnia .
• Depression — for information, see the CKS topic on Depression .
• Anxiety — for information, see the CKS topic on Generalized anxiety disorder .
• For general information on end-of-life care, see the CKS topic on Palliative care - general issues .
• Consider what practical and emotional support can be provided to family/carers of people with end stage COPD.

Drug treatments for breathlessness

• When appropriate, offer opioids to relieve breathlessness in people with end-stage COPD that is unresponsive to other medical therapy.
• Benzodiazepines — seek specialist advice, or for more information see recommendations in the section on Benzodiazepines in the CKS topic on Palliative care - dyspnoea .
• Oxygen (if the person is not already on long-term oxygen therapy [LTOT]) — seek specialist advice, or for more information see recommendations in the section When to consider oxygen in the CKS topic on Palliative care - dyspnoea .
• Seek advice from the palliative care team or specialist respiratory nurses if unsure or if measures in primary care fail.

Advance care planning and advance decisions

Advance care planning.

• Understanding of their illness and prognosis.
• Preferred place of care.
• When, who, and how to call for help when there is a crisis or acute exacerbation, and management options.
• Discontinuation of inappropriate interventions.
• Interventions which might be considered in an emergency, for example, anticipatory medications.
• Whether resuscitation should be attempted if they were to have a life-threatening deterioration — this information should be made available to out-of-hours and ambulance services.
• Support of their family/carers.
• Needs for psychological and spiritual care.
• Copies of advance care plans should be available in the person’s home or with them if admitted to hospital, care home or hospice.
• For more information on advance care planning, see the section on Important communication issues in the CKS topic on Palliative care - general issues .
• It is rarely feasible to give precise instructions for all potential eventualities.
• The person's views and values may change over time in response to the increasing severity of disease or during an exacerbation.

Advance decisions  — advance decisions allow a person to state in advance (before they have lost the capacity to decide) how they wish to be treated if they lose capacity.

• Advanced decisions can be written documents, witnessed oral statements, signed printed cards, smart cards or a note of a particular discussion recorded in the person’s records. In England and Wales, the decision should comply with the provisions of the Mental Capacity Act if it is to be legally binding. In Scotland and Northern Ireland, advance decisions are not covered by statute but it is likely they are covered by common law.
• To be valid the advance decision must be specific about the treatment that is being refused and the circumstances in which the refusal will apply.
• The person is an adult, and
• Was competent and fully informed when making the decision, and
• The decision is clearly applicable to the current circumstances, and
• There is no reason to believe that they have since changed their mind.
• Advance requests for treatment are not legally binding but should be taken into account when assessing the person’s best interests.
• Further information is available in the ' Mental Capacity Act 2005 Code of Practice ' available at www.gov.uk .

The recommendations on how to manage a person with end-stage chronic obstructive pulmonary disease (COPD) are based on clinical guidelines British Thoracic Society (BTS) guidelines for home oxygen use in adults [ Hardinge, 2015 ], Global initiative for chronic obstructive lung disease (GOLD). Global strategy for the diagnosis, management, and prevention of chronic obstructive pulmonary disease. 2019 report [ GOLD, 2019 ] and Chronic obstructive pulmonary disease in over 16s: diagnosis and management [ NICE, 2019a ].

Simple measures for breathlessness

• Clinical guidance from the BTS [ Hardinge, 2015 ], GOLD [ GOLD, 2019 ] and NICE [ NICE, 2019a ] recommend simple measures such as fan therapy.

Opiates for breathlessness

• Guidance from BTS [ Hardinge, 2015 ], GOLD [ GOLD, 2019 ] and NICE [ NICE, 2019a ] recommend consideration of opiates for people with end-stage disease for relief of breathlessness which has not responded to other medical therapy.
• In addition, NICE guidance states that when appropriate, benzodiazepines, tricyclic antidepressants, major tranquillisers and oxygen can be used for breathlessness in end-stage COPD that is unresponsive to other medical therapy. Guidance from GOLD states that there is no evidence of a beneficial effect from benzodiazepines.

Oxygen for breathlessness

• Guidance from GOLD [ GOLD, 2019 ] and NICE [ NICE, 2019a ] is in agreement that oxygen can be considered in people with end-stage disease for relief of breathlessness which has not responded to other medical therapy.
• The BTS [ Hardinge, 2015 ] recommend that people with end-stage cardiorespiratory disease who have intractable breathlessness should not receive treatment with pulsed oxygen therapy (POT) if they are non-hypoxaemic or have mild levels of hypoxaemia above long term oxygen therapy (LTOT) thresholds (SpO2 ≥92%). Non-pharmacological treatments (such as fan therapy) and assessment for a trial of opiates should be considered.

Nutritional support

• Guidance from GOLD recommends nutritional support in malnourished people with COPD — low BMI is associated with worse outcomes and nutritional supplementation can help with weight gain improving respiratory muscle strength and quality of life [ GOLD, 2019 ].

Advance care planning and advance decisions

• The information on advance care planning and advance decisions is taken from the General Medical Council, Treatment and care towards the end of life: good practice in decision making [ GMC, 2010 ] and the NICE guidelines on Decision-making and mental capacity (NG108 ) [ NICE, 2018b ] and End of life care for adults: service delivery (NG142) [ NICE, 2019c ].
• The statement in relation to the potentially limited usefulness of advance decisions in COPD is based on expert opinion in review articles [ Halpin et al, 2008 ; Spathis and Booth, 2008 ] and from previous external reviewers of this CKS topic.

The content on the NICE Clinical Knowledge Summaries site (CKS) is the copyright of Clarity Informatics Limited (trading as Agilio Software Primary Care) . By using CKS, you agree to the licence set out in the CKS End User Licence Agreement .

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A COPD Case Study: Jim B.

This post was written by Jane Martin, BA, LRT, CRT, Assistant Director of Education at the COPD Foundation .

We're interested in your thoughts on our latest COPD case study: Jim B., a 68-year-old man here for his Phase II Pulmonary Rehabilitation intake interview.

A bit more about Jim:

Medical history: COPD, FEV1 six weeks ago was 38% of normal predicted, recent CXR shows flattened diaphragm with increased AP diameter, appendectomy age 34, broken nose and broken right arm as a child.

Labs: Lytes plus and CBC all within normal limits.

Physical exam: Breath sounds markedly diminished bilaterally with crackles right lower lobe and wheeze left upper lobe. Visible use of accessory muscles. O2 Saturation 93% room air, 95% O2 on 2lpm. Respiratory rate 24 and shallow, HR 94, BP 150/88, 1+ pitting pedal edema.

Current Medications: Prednisone 10mg q day / DuoNeb q 4 hrs. / Ibuprofen 400mg BID / Tums prn (estimates he takes two per day).

Respiratory history: 80-pack-year cigarette history, quit last year. He has developed a dry, hacking, non-productive cough over the last six months. Had asthma as a child and was exposed to second-hand smoke and cooking fumes while working at family-owned restaurant as a child. Lately, he has noticed slight chest tightness and increased cough when visiting his wife’s art studio.

Family history: Father had emphysema, died at age 69, mother died of breast cancer at 62. Grandfather died at age 57, grandmother died in her 40s of suicide. Six adult children, alive and well.

Previous respiratory admissions: Inpatient admission for six days last winter for acute exacerbation of COPD with bacterial pneumonia requiring 24-hour intubation and mechanical ventilation.

Psych: Jim presents to his Phase II Pulmonary Rehab intake interview appearing disheveled, wearing a sweatshirt, pajama pants and bedroom slippers. He is accompanied by his wife and adult daughter who appear neat, clean and well dressed. Patient states, “I don’t think you people can do anything to help me. I’m only here because they (referring to wife and daughter) made me go.” Jim states that he has been doing less and less at home since discharged from the hospital last winter. Wife states, “He walked outside a little with our grandchildren last Sunday and got so short of breath, he almost collapsed.” Became emotional when saying, “It scared the kids. It tore me up for them to see me that way. Besides that, with this darn shoulder I can’t even pick up the little ones anymore.”

Social: Lives at home with his wife of 43 years who works as an artist. Two out of his six children live within 30 miles of Jim’s home.

Occupation: Building contractor, retired three years ago. Jim states, “I made a good living. All the kids were able to go to college. I was strong. I could work circles around anybody in my crew. And now look at me. I’m tied to that darn breathing machine (referring to nebulizer) and I might as well hang it up.” Wife states, “He used to have all kinds of energy. Now all he does is sit in his chair watching TV, eating potato chips and peanuts.”

Tell us your impressions!

• What co-morbidities should be explored?
• How would you change Jim’s medication regime?
• What psych/social recommendations would you make?
• What other medical disciplines should do a consult on this patient?
• This is a real case. What are your thoughts on what took place following Jim’s pulmonary rehab intake interview?

This page was reviewed on March 3, 2020 by the COPD Foundation Content Review and Evaluation Committee

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Chronic Obstructive Pulmonary Disease (COPD): best practice guide

This document is for healthcare professionals and patients to show how this condition could be best managed from the unscheduled care perspective.

9. Case Studies

What follows are case studies from three different regions that showcase this best practice through taking a whole system, multi-disciplinary approach to best practice.

Case Study 1

Integrated Care in NHS Lothian – Edinburgh Health and Social Care Partnership

Shifting the Balance from Hospital to Home

The team in Edinburgh have set out to change the way the COPD pathway is delivered, shifting the balance away from care in hospital to care at home. The aim is to support patients to self-manage confidently and safely out of the acute setting, to reduce avoidable ED attendances and admissions, and to future proof against unsustainable increases in demand. It secured short-term Invest to Save funding to drive forward an improvement programme.

Programme Manager for Long-Term Conditions, Edinburgh Health and Social Care Partnership, Amanda Fox explained:

"In 2013, hospital was the default destination for too many COPD patients. Our aim was to create a person-centred Community Respiratory Hub that would provide an alternative and support patients with COPD to stay out of hospital and manage their condition effectively at home. We looked at every aspect of COPD – physical, psychological and social - and devised a holistic multidisciplinary team approach to patient care."

The Crucial Role of Prevention and Supported Self-Management

Respiratory Consultant and COPD Clinical Lead for NHS Lothian, Gourab Choudhury explains how his region is leading the way in COPD care by focusing on prevention and supported-self management:

"The situation for us here in Lothian in relation to COPD care is not uncommon. Currently, over 75s are the highest users of NHS services and that figure is set to rise significantly. COPD represents 20% of all respiratory conditions presenting in hospital and is the most common condition presenting in primary care."

Early Intervention

Education and communication are important if we are to make a difference to the lives of COPD patients. The onset of the disease can be insidious and we estimate that there are high numbers of people who are undiagnosed. It's important to catch the disease early as 20-30% of lung function decline happens in the first phase, and stable and moderate patients can quickly become severe and complex.

Self-Management

"There are some things that patients can do – such as giving up smoking and improving their self-management - to slow the decline and improve their quality of life. The Community Respiratory Team ( CRT ) play a crucial role in supporting people to better understand and effectively self-manage their condition using LiteTouch telehealth and it acts as a first point of contact for people when their health deteriorates."

Reducing Bed Days

"Between 30-50% of acute COPD exacerbations could be treated effectively at home, which was a driver to developing a community-based respiratory hub that integrated primary and secondary care, out of hours and emergency services whilst delivering consistency of care across the city. Since the creation of the new integrated multi-disciplinary team in early 2014, we have succeeded in reducing respiratory bed days by 3000."

Prompt Intervention

"The improvements are not simply about exacerbation management, rather the focus is to adopt a 'whole system' and 'whole person' approach ensuring people at risk of health deterioration are proactively identified and supported earlier in their pathway, ensuring unnecessary admissions are prevented. To achieve this, a new pathway has been developed for patients who are attended by the Scottish Ambulance Service ( SAS ) but who do not need to be conveyed to hospital. As an alternative, SAS refer to the community respiratory team who are committed to responding to the patient within 90 minutes".

Immediate and Early Supported Discharge

"The team recognises that a number of patients will require an admission to support their respiratory deterioration however facilitating early supported discharge is a key role for the community respiratory team who proactively identify inpatients via Boxi reports. The team has established a 'prof-to-prof' telephone support line with the hospital consultant to enable direct and frequent communication for advice and support. There is a percentage of patients who self-present at the ED or are conveyed but an admission is preventable. To support these patients, they have a dedicated team of respiratory nurses who visit ED and the Medical Assessment Unit ( MAU ) three or four times a day to assess if they are stable enough for an immediate discharge into the care of the community respiratory team. This has significantly increased the number of immediate discharges since we began the COPD improvement work.

It is in everyone's interests to discharge COPD patients from hospital as quickly as possible. Aside from saving money and freeing up beds, older patients who remain in hospital can decondition quickly, losing muscle mass and confidence. It might take a week in hospital to bring a patient back up to their baseline, which is frustrating for them and an inefficient use of resources.

Acute and Chronic Condition Management

The CRT responds to acute episodes for COPD patients before handing over to the IMPACT team of district nurses who manage chronic cases. Every COPD patient has an anticipatory care plan which is created by their GP and shared via their Key Information Summary ( KIS ) and can be accessed by those involved in their care including NHS 24, the Scottish Ambulance Service, Lothian Unscheduled Care Service ( LUCS ), and primary and secondary care teams. Additionally, an alert is placed on the patient's record in hospital and community IT system, Trakcare, to highlight that CRT is the first point of contact for care of patients known to their team.

Prior to the integrated service, communication between primary and secondary care was not well established. It was a challenge to deliver the vision of one integrated team across this interface, but this was achieved by running a series of innovation sessions where the wider teams, including external partners, could contribute to a 'share and learn' environment and design the new pathway together. Although the community respiratory team existed before the project they were little known and GP s didn't have the confidence to refer acutely unwell patients at the point of deterioration. Through well planned stakeholder engagement that has completely changed with an increase in GP referrals.

A. Community Respiratory Team - Spreading the Model

"The COPD integrated care model we have developed in Edinburgh has been extremely successful. We far exceeded our bed day reduction target and have been successful in truly integrating teams from primary and secondary care to form one multidisciplinary team with a shared vision of improving patient care: 'wherever and whenever the patient should have the best service'. The person-centred nature of the integrated team ensures a patient's physical, psychological and social needs are met. Currently, the model is being tested within Midlothian where as an ex-mining community, there is a high prevalence of COPD . We believe all parts of Scotland could benefit from a Whole System, Whole Person approach like ours. In each region the particular challenges and circumstances will be different but the key is to have the right team with the right skillset".

What They Did:

1. Community Respiratory Hub: A community based respiratory hub was developed to support people at home during acute exacerbations – preventing unnecessary hospital attendances and to empower patients to self-manage their condition. The aim was to provide the best service to patients wherever and whenever they needed it. The multi-disciplinary hub team includes a dedicated clinical psychologist, integrated care pharmacist and a co-ordinator from the third sector organisation, Grapevine, to provide disability information support to people with COPD that are housebound.

2. COPD Care Bundle Checklist: The team devised a checklist that is used by every team for every COPD patient. Prior to the creation of the checklist, acute staff were assuming certain discussions were taking place with GP s and vice versa. Now, the checklist enables everyone to see what interventions have taken place and when, including advice about quitting smoking, anticipatory care planning and end of life discussions. The checklist remains with the patient's records and is accessible by everyone involved in their care, including out of hours and the ambulance service.

3. Extended Skills and Operating hours: A community respiratory team already existed in Edinburgh prior to the respiratory hub. The new hub brought in additional services and upskilled staff, with training in effective communication for anticipatory care planning and independent prescribing. Operating hours were extended from 8am to 6pm to provide a seamless transition to out of hours services. Uniquely, the community respiratory team have admission rights and are able to admit patients directly to a respiratory ward if necessary, without having to refer them back to their GP . GP s who request a COPD bed are automatically referred to the hub by the Bed Bureau.

4. Psychology Input: Evidence tells us that up to 55% of patients with COPD have anxiety and up to 25% have depression, and they are ten times more likely to experience panic disorder than the general population [7-9] . This can lead to people with COPD calling 999 when they become breathless. These symptoms can be exacerbated by their hyperventilating due to stress rather than being entirely due to the condition. Prior to the project there was no dedicated psychology input to support these individuals so a dedicated COPD clinical psychologist was asked to join the multi-disciplinary hub team to provide support to patients at home, in hospital and in a clinic setting (see below for more info).

5. Pharmacy Support: Many of the patients managed by the Community Respiratory Hub have multimorbidity and are prescribed an average of 15 medications. An integrated care pharmacist reviews the medications for these patients and provides support with administration and compliance.

B. Psychological Services – Support model

Impact of Mental Health

As mentioned on page 18 there is a high prevalence of psychological distress in people with COPD with some evidence that mental health concerns in COPD patients are three times more prevalent than in the rest of the population [10] . In view of this the Lothian team believed that it was essential to address both the physical and mental health of COPD patients if it was to make a lasting impact on admissions and patient experience. Head of Adult Psychology Services for NHS Lothian, Belinda Hacking explained why:

"Anxiety and depression in COPD patients are strong predictors for hospital admission, readmission, increased exacerbations and longer hospital stays. They affect a patient's ability to manage their condition, making them less likely to stick to their treatment plan and more likely to take risks, such as drinking and smoking. This places increased demand on an already over-stretched system. The cost of treating COPD patients who have anxiety and/or depression is twice as much as treating those who don't. In the past there has been too much focus on a patient's physical symptoms and very little consideration of the psychological factors affecting their behaviour. We wanted to address that."

An individual's ability to cope with COPD is due only partly to the severity of their condition. To a large extent, their attitude to the condition and ability to adjust to their change in circumstances is crucial. For these reasons, tackling the psychological challenges of living with COPD was regarded as the missing piece of the jigsaw by the NHS Lothian team.

What They Did

The Psychology Service proposed a three-level approach to managing COPD patients:

1. Providing psychological support to patients with the most complex disorders.

2. Assessing the most frequent hospital attenders to understand in more detail the reasons for their hospital visits. The need for this was highlighted by the case of one individual whose COPD was relatively mild but whose high anxiety levels had prompted one hospital visit after another, seeking reassurance. The review found that only 40% of those patients reviewed had a pressing medical need to go to hospital. The remaining 60% needed varying degrees of psychological support.

3. Reviewing Key Information Summaries and feeding into case conferences and discharge planning meetings. Highlighting the psychological needs and psychosocial context of each individual ensured holistic patient-centred management plans were created to help people to cope better at home.

Programme Manager for Long-Term Conditions, Edinburgh Health and Social Care Partnership, Amanda Fox created a checklist to identify COPD patients who may benefit from referral to the psychology team. This included all frequent attenders.

Of those patients referred to the clinical psychology service in Edinburgh, 63% had clinically significant anxiety and 38% had clinically significant depression. Before psychological intervention, 28% of patients had 'severe' anxiety symptoms and 36% had 'moderate' symptoms. Following psychological intervention 89% of participants' scores fell within the 'normal' range. It was a similar pattern for depression, with 12% of patients initially having 'severe' symptoms and 27% 'moderate'. After working with the psychology service, 82% of scores fell within the 'normal' range. A clinically significant improvement was seen in the overall quality of life in those people with COPD who completed a psychological intervention. Patients reported less shortness of breath, less tiredness, and increased confidence in their ability to cope with their COPD symptoms following psychological input.

One patient with COPD explained that psychological intervention helped her to understand that anxiety and panic played a part in her breathlessness and admissions to hospital. Introducing new coping skills helped her to manage her panic more effectively:

"Before my COPD got worse, when I had an episode, I would get panicked and go to the hospital, but now I can manage that panic better and manage to stay at home most of the time, which is where you want to be."

There are many reasons why COPD patients experience high levels of anxiety and depression as Dr Grainne O'Brien, Clinical Psychologist, explained:

"People with COPD often experience anxiety – being breathless can be very scary and can cause someone to hyperventilate, thereby adding to the sensation of breathlessness. This symptom of breathlessness is experienced alongside other challenges of living with a long-term condition including other physical symptoms such as fatigue, limited mobility and increased dependence upon family and carers, People with COPD can lose touch with their social networks and have to stop certain hobbies which can be very isolating. These changes can result in increased anxiety, a loss of confidence and lowered mood.

"If we really want to make a difference to the lives of people with COPD , why would we not address their mental, as well as their physical health?"

As well as tackling some of the causes behind a patient's anxiety or depression, the psychology team were also able to support people to become more engaged in their treatment. "It is about understanding what matters to them," added Grainne, "so we can help them to understand the relevance of their treatment to achieving their personal goals and best quality of life. This is a very enabling way of working with COPD patients and it proved very effective."

The Psychology Team also plays a key role in helping patients and their families to adjust to their new circumstances, particularly as they approach the palliative stage of their illness. For some patients the prescription of long-term oxygen therapy at home can represent a significant deterioration in their condition. Psychological intervention can help somebody to adjust to the change in their illness as demonstrated by the below quote from a specialist respiratory nurse in relation to a particular case.

"When Mrs X was required to have Long Term Oxygen Therapy, this became a major hurdle for her to come to terms with. With the help of psychology she was able to overcome this and is now well established at home with oxygen. I feel that if she had not had any input from psychology then she would have required more admissions to hospital due to anxiety and an inability to cope rather than actually due to being medically unwell." - (Specialist Respiratory Nurse).

As clinical psychology was a new service within COPD care in Edinburgh, an initial challenge was to link the new service into the various existing COPD services and demonstrate the various roles a psychologist could play within the team. Time was spent embedding psychology within the wider integrated care team and ensuring accessibility and responsive service provision by locating the service across multiple bases (across community and acute settings), attending regular MDT meetings and providing alternative psychological viewpoints into patient careplans.

C. Principles of the overall approach

1. Collaboration and Co-location: Co-locating the Psychologist, Pharmacist and third sector co-ordinator with the Community Respiratory Hub helped to create a sense of shared vision and purpose. Regular conversations took place between acute colleagues and the Psychology Team to encourage different perspectives on the reasons that patients were presenting for treatment. It was about everyone collaborating and playing to their strengths. Belinda said: "Sometimes colleagues would say "I know there is something else going on here but I don't have the skills to deal with it". Clinicians are very time-limited and when they are trying to work outside their speciality it can take too long. They welcomed being able to refer people to us for further assessment".

2. A Holistic View of Patients: Considering both the physical and psychological factors at play enabled the team to gain a really clear understanding of patients and how best to help them. Once they understood the actual issues it was far easier for the team to address them. For example, one patient who regularly called for an ambulance was found to be suffering from depression and loneliness. She was given the number of a 24-hour telephone helpline for older people and the frequency of her admissions has dropped dramatically.

3. Innovation: There was a great deal of enthusiasm and willingness to try new approaches amongst the stakeholders including SAS , community and acute-based respiratory teams. The innovation sessions provided a platform for the different disciplines to learn from each other and share their ideas and support a collaborative approach to developing the new pathways.

4. Support to Staff: Not only does the Psychology Team support patients but it also provides psychological advice, training consultation to staff. For example, the team has held training sessions for senior physiotherapists to enable them to have difficult Do Not Resuscitate conversations with patients. The Prof-to-Prof support line is in place to provide direct communication between the Community Respiratory Hub and the hospital consultant for advice which can be decision to admit or general support.

5. Liaising with the Ambulance Service: The team worked collaboratively with the SAS to develop new COPD pathways providing an alternative to hospital admission. The Community Respiratory Hub will respond to SAS referrals within 90 minutes. Out of hours, SAS can request an urgent visit from a Lothian Unscheduled Care Service GP . Overnight information of these referrals are passed to CRT to follow up, ensuring there is consistency of care.

6. Supported Self Management: Patients are supported to self-manage their condition at home using LiteTouch telehealth. An in-depth assessment establishes their normal levels and they regularly monitor for changes. If changes are noted, patients have a proactive plan of self-care, including use of nebulizer or certain medications, anxiety management strategies such as breathing exercises, along with CRT contact details if symptoms worsen. Rather than being the default, calling an ambulance only becomes necessary when other routes have been tried.

7. Medication Reviews: An Integrated Care pharmacist conducts medication reviews, ensuring that patients are taking the right medication in the right dose at the right time and offering them the opportunity to ask questions. Often the pharmacist will visit patients at home jointly with the CRT to ensure the medication regime is understood.

8. Frequent Attender Database: COPD patients who have had two or more hospital admissions within 12 months are added to the frequent attender database. These patients are reviewed at the regular multidisciplinary team meetings. The team can see the patients' admission patterns and check what types of support services are in place. Using a care bundle checklist to consider all options, the multi-disciplinary team agree a plan of care which is shared with the patient's GP . A member of the team visits the patients to discuss the plan and GP s are asked to create a KIS with action points for review at the next meeting,

9. Multidisciplinary Team Meetings: Full multidisciplinary team meetings are held fortnightly at the Royal Infirmary and monthly at the Western General in Edinburgh. They take the form of a virtual clinic and include members of the extended team, including: respiratory consultants, community respiratory physiotherapists, respiratory nurse specialists, IMPACT nurses, psychologist, pharmacist, PACT doctors, GP s, the ambulatory service and pulmonary rehab. The care bundle checklist prompts discussion and case review for frequent attenders and other patients highlighted at being at risk by the team.

10. Branding and marketing: The project manager developed a brand for the Community Respiratory Hub using the strapline "Think COPD , think CRT ". Fridge magnets and mousemats are available to drive home its message to patients and healthcare professionals alike. Every GP practice in Edinburgh was sent mousemats and regular newsletters to raise awareness of the newly formed service and the support available. In the run-up to public holidays, the team holds a marketing campaign to remind referrers to use the hub rather than sending COPD patients to the ED . The 'Think COPD , Think CRT ' strapline has been added to every frequent attender KIS to prompt referrals at point of deterioration.

• Primary care, secondary care, social care and the ambulance service were all accustomed to working in silos. There was no joined up approach to COPD and no alternative pathways to acute care. Innovation sessions helped to break down these barriers and support teams to better understand each other's roles and facilitate integrated working.
• The COPD project only covers the Edinburgh area. There were some challenges for the SAS as their boundaries were different and they could only refer Edinburgh patients to the service. The team responded by producing easy-reference pocket guides for ambulance crews.
• There was no ring-fenced training time for SAS staff so any training they attended was unpaid. The team created a series of accessible online video clips that staff could watch without having to take time off work.

The project was evaluated by Lothian Analytical Services between April 2013 and September 2015. The target was to reduce respiratory bed days by 206. The team achieved a reduction of 1,418.

Since that time, bed days have continued to fall. The figure now stands at 2,954. There has also been a 7% reduction in length of stay of 48 hours or less.

There have been 252 multidisciplinary team reviews of frequent attenders and 74% had a new KIS as a result.

10% of all COPD requests to the bed bureau have been rerouted to the Community Respiratory Hub. There has been a 23% increase in referrals to the Community Respiratory Team. 37% of patients referred to the team have avoided a hospital admission.

Pharmacy has conducted 239 medication reviews helping to target non-compliance.

The project has achieved several accolades including a Scottish Health award: Care for Long Term Illness and poster awards at the National Respiratory Managed Clinical Network learning event and Institute of Healthcare Management ( IHM ) conference. The programme manager, Amanda Fox, was awarded Scotland's Top Healthcare Manager runner up by the Institute of Healthcare Management.

WHAT MADE THE EDINBURGH PROJECT SO SUCCESSFUL

A View from the Frontline

Laura Groom is Team Lead for the Community Respiratory Team in Edinburgh and Advanced Physiotherapy Practitioner. She joined the service in 2008 and has gained a detailed insight into the factors that contribute to its success.

Plugging the Gaps

Laura explained:

"We recognised in Edinburgh that there were significant unmet needs in the care of COPD patients. For example, we realised that:

• we might not be capturing all of the patients who could be successfully treated at home
• COPD patients are at high risk of anxiety and depression
• patients might need support with other aspects of their life besides their physical wellbeing
• options for acutely ill patients were limited. They tended to call 999

COPD management is typically fairly standardised. This project set out to identify gaps in the service and plug them wherever possible."

GP Engagement

Members of the CRT visited GP s to discuss the type of support they might need for COPD patients, including mental health provision and prescribing. The team held GP events, both to hear from GP s about their experience of caring for COPD patients and to introduce them to the services offered by the Community Respiratory Team. They also talked at GP forums. Laura commented:

"A key piece of learning for us was to create different presentations for different audiences so you can really target your message. The presentation we gave to GP s, for example, was different to the presentation we gave to colleagues in social care."

GP s have been enthusiastic about the new service. Day-to-day care of COPD patients is provided by the Community Respiratory Team with GP s being kept informed.

A Holistic Perspective

COPD is a risk factor for low mood and anxiety. Laura said:

"Breathlessness, infections and regular hospital admissions are characteristics of COPD . Ongoing poor health and a decline in function can bring people down, making them prone to depression. At the same time, the sensation of breathlessness can lead to rising anxiety, which may contribute to the breathlessness. A patient's mental health, along with factors such as poor living conditions and financial difficulties all contribute to their overall health and wellbeing. One of the major success factors for our work in Edinburgh is the fact that we consider the patient in their entirety, not their physical health alone."

Integrated Model of Care

One of the factors that contributed to true multidisciplinary working in Edinburgh was the fact that services are co-located, making it easier to provide an integrated model of care. This gives clinicians a good understanding of each other's roles and challenges. Some of the services, such as psychology and pharmacy, are co-located for one day a week. The full team meets monthly at the Western General Hospital and weekly at the Royal Infirmary. Patients who are unwell are discussed at these multidisciplinary team meetings.

The team also holds regular shadowing sessions so the clinicians can experience their colleagues' day-to-day reality. The benefits of this, in terms of insights and relationship-building, make it a very worthwhile investment of time and resources. The Community Respiratory Team has successfully built a bridge between primary and secondary care.

Data to Inform Services

The team has used data effectively to identify frequent attenders. This enables them to target COPD patients who need their support the most, thereby allowing them to make the biggest difference. At each multidisciplinary team meeting, the team reviews the latest data on patient referrals and admissions, making decisions based on real-time information.

Clinical Leadership

Strong clinical leadership played a key role both in getting the project underway and in unsticking possible challenges. The team found it particularly helpful for one clinician to be able to speak to another about the most appropriate care of a patient.

Innovation Sessions

At the start of the project, the team held Innovation Sessions to give everybody the opportunity to share their thoughts on what good COPD care looks like. This helped to achieve a good cross-fertilisation of ideas and also assisted with engaging stakeholders in the work taking place and the reasons behind it.

An Alternative to Admission for the Ambulance Service

Paramedics have welcomed the new Community Respiratory Team as it provides a viable alternative to hospital admissions for COPD patients experiencing an exacerbation in their symptoms. Now ambulance teams can confidently refer patients to a community-based service rather than automatically admitting them.

Self-Referral by Patients

"I feel very strongly about this," said Laura. "In the past there has been a perception that allowing patients to self-refer would open the floodgates. Clinicians believed that patients were on a downward trajectory and it was pointless to discharge them when it was likely that they would have to come back into hospital. Actually, we have found that giving them the right level of education and confidence in the service and providing telehealth has enabled us to manage self-referrals effectively. There has undoubtedly been an increase in telephone triage but this is the right thing to do for patients. It is good for us to build an ongoing relationship with them rather than having to start from scratch with them when they become unwell."

The Right Model of Care

Laura believes that the model of care for COPD developed in Edinburgh could be scaled across NHS Scotland. "This is the right model of care for COPD patients and is very transferable, if not in its entirety then in part. We have invested a huge amount of time in developing this process. It would be great if other Health Boards could benefit from this and improve their services for this group of patients who are often overlooked.

Case Study 2

Hospital at Home Keeps COPD Patients out of Hospital

NHS Lanarkshire

The 2020 Vision sets out the government's aspiration for people to live longer, healthier lives, supported to be at home rather than in a hospital setting wherever possible. In this vision, hospital becomes the place of choice only after all other resources have been exhausted. COPD patients in Lanarkshire are treated on a virtual ward rather than being admitted to hospital, helping to reduce the risk of deconditioning and hospital-acquired infections.

National Clinical Lead for Older People and Frailty, Dr Graham Ellis explained:

"Hospital at Home provides a genuine alternative to admission, taking multidisciplinary care into the patient's own home thereby avoiding the disruption and potential harm of an admission. Crucially, there is no difference between the diagnostics provided in hospitals and the diagnostics that we can provide in the patient's own home."

Since the service was launched in 2012, any GP that contacts the bed bureau requesting admission for a COPD patient is automatically referred to Hospital at Home. Patients are seen by a geriatrician or COPD specialist within an hour of referral and consultants create an individual care plan. Only those patients with a genuine clinical need are admitted to hospital.

Virtual Ward Round

Hospital at Home employs a team of 38 WTE (whole time equivalent) therapists, consultants, nurses, physiotherapists, OT s, ambulance staff and support workers. The team holds a daily virtual ward round to assess all patients under its care. Staff visit patients in their own home to carry out all of the tests that would normally be done in hospital, including blood tests and X-rays. They can also carry out clinical reviews and prescribe or amend medication plans.

A Genuine Alternative to Admission

Graham said:

"The service succeeds in keeping 75% of COPD patients in their own homes. We have an average length of stay of four or five days and our readmission and mortality rates are on a par with the acute hospital. We are working with some of the region's most unwell patients, many of whom have multiple pathologies including COPD . It is important to keep them out of hospital wherever possible as they are highly susceptible to hospital-acquired infection, falls and deconditioning."

Pioneering and Cost-Effective

Hospital at Home in Lanarkshire was the first of its kind in Scotland and has inspired the creation of similar services in Lothian and Fife. The service also attracted the praise of The Scottish Government's Director of Health and Social Care, Derek Feeley.

Allied Health Professional Rehabilitation Consultant in Older People and Lanarkshire Hospital at Home Lead, Claire Ritchie commented:

"When the service began we found we were using far fewer resources than we anticipated – just a third of our total budget. We identified a number of reasons for this. Older people are far more resilient when they remain in their own homes. They remain mobile and cognitively more aware. Often they have family or friends to support them. Hospital at Home gives them rapid access to skilled geriatricians who can create a tailored treatment plan and review their medications. On occasions we have been able to reduce significantly the amount of drugs people are taking."

Meeting Demand at Lower Cost

Since 2015, Hospital at Home has managed 1,751 patients in their own home. It has cut ambulance service costs by £464,000 and reduced A&E admissions by 24%. In addition to seeing patients referred by GP s, the service now manages step-down patients from acute wards. Patient satisfaction levels are high. Prescribing costs are also significantly lower than in hospital.

Graham concluded:

"We believe that virtual wards will enable us to meet growing demand for COPD services over the next 10 years. Forecasters predict that, based on the current trajectory, we would need an additional 440 beds to meet rising rates of the condition. This is clearly unsustainable and Hospital at Home is proving to be a genuine alternative to an exponential rise in hospital admissions."

1. Resistance to Change: As with any new service there was a certain amount of resistance to change and uncertainty at first. The Hospital at Home team met up with GP s and acute consultants to answer questions and allay fears. Bringing together different cultures and teams into one also proved challenging.

"We worked with a coalition of the willing at first," explained Claire. "Once we began to collect evidence of the impact we were making it became easier to engage people."

2. Rapid Diagnostics: For the new service to work, it was important for it the team to have rapid access to diagnostics and for lab results to be processed as quickly as they would be for inpatients. The Hospital at Home team worked hard to engage colleagues in diagnostics and explain the new service.

3. Building the Right Skills Mix: Hospital at Home needs a blended mix of skills. It took time to recruit and train staff in the correct skills mix. The team developed a set of competency-based assessments and used the Aston Model to build a cohesive team culture.

Case Study 3

Small Changes Make a Big Difference in NHS Greater Glasgow and Clyde

Small things can make a big difference to the quality of life of patients with COPD , according to Dave Anderson, Clinical Lead for the Community Respiratory Team and Pulmonary Rehab in NHS Greater Glasgow and Clyde. If you live in Glasgow, you are 45% more likely to have COPD than any other part of Scotland where it accounts for 45,000 emergency bed days costing £9.5 million to the health board annually.

The region launched a pilot project to reduce COPD admissions and improve quality of life for patients in Glasgow. A Community Respiratory Team provides home-based care for COPD patients and a hospital-based Pulmonary Rehabilitation Team deliver patient education and support with mobilisation and exercise capacity.

Dave explained:

"There are 120,000 people with COPD in Scotland. The condition is responsible for around 4,500 deaths per year - one of the most common causes of death in Scotland. Nationally there is a lack of recognition of the condition and an almost constant pressure to reduce services.

"Coupled with this is a lack of funding for services, and it can be challenging to get COPD patients to engage with support services. Their expectations tend to be low and it can be hard to get them to recognise the impact that even small changes could have on their life. But, just because it is challenging, that is not a reason to accept the status quo. People with COPD often come from poorer backgrounds. It is a disease associated with smoking and it is easy to overlook these patients because of that. But this is a growing challenge for all of us and I feel strongly that these patients deserve better. This is happening on our doorstep, right now, and we owe it to people with COPD to do what we can to make things better."

Community Respiratory Team Working Towards a Patient's Own Goals

Making things better means keeping patients out of hospital wherever possible and supporting them to make changes in their lives. Dave explained:

"We encourage patients to set their own goals. They might want to be able to go out to the shops or to Bingo, for example. The Community Respiratory Team works with them to help them achieve whatever it is they want to achieve, however small. People's quality of life can improve significantly by achieving even marginal improvements in mobility. There is no wonder drug that can cure COPD but there are things that can be done to ensure that patients are receiving the best treatment for their condition, including support to stop smoking or to walk more."

Community Respiratory Team

The Community Respiratory Team serves Glasgow City Health and Social Care Partnership and is located in Possilpark Glasgow, in one of Scotland's most deprived areas. The team has twenty members and consists of physiotherapists, respiratory nurse specialists, occupational therapists, pharmacists, dieticians and support workers. The service covers the whole of Glasgow City HSCP , a population of 596,550.

The Community Respiratory Team was created following a five-year project in primary care. During this time three separate projects were piloted and evaluated and the team implemented some of the most successful components of each. These include having respiratory nurses located within the community and adding in a specialist dietician into the team.

The focus of the Community Respiratory Team is avoidance of hospital admissions. As Marianne Milligan, Team Leader of the Community Respiratory Team explains:

"If you live in Glasgow, you are more likely to have Chronic Obstructive Pulmonary Disease ( COPD ) than any other part of Scotland and the condition accounts for 45,000 emergency bed days costing £9.5 million to the health board annually which is the highest nationally. A specialist multidisciplinary team placed in the community to support people having exacerbations of COPD was previously not in existence; people had to be admitted to hospital to receive this support. Piloted initially in one sector of the city, the service proved that it could provide safe and quality person-centred care that produced significant cost savings. With Scottish Integration Care Fund we could expand to city wide and now have secured permanent funding for this service. Scottish Government drivers are to transfer the balance of care into the community and enabling self-management, this is what our service can deliver. In my experience people want to stay in their own homes if there is a safe and effective alternative and wish to avoid a hospital admission as much as possible".

The team provides a reactive service to people suffering exacerbations. GP s utilise it as an alternative to patients going into hospital by accessing the specialist service and supporting the patient in their own home. 92% of acutely unwell patients at risk of hospital admission are seen the same working day and there has been an 83% reduction in anticipated hospital admissions as a result.

The service also facilitates early discharge from hospital by closely linking with secondary care colleagues and providing responsive follow up and support. The ethos of the service is to provide a personalised approach to care, enabling self-management by the patients which includes: increasing their own knowledge of their condition and especially what to do when they are unwell; improving knowledge of inhaled therapies; knowing how to clear their chest and also increasing their physical activity and independence through the provision of home pulmonary rehabilitation and equipment. In addition, malnutrition, mental health issues of anxiety and depression, and complex polypharmacy/ comorbidities that are commonly seen in end stage COPD are addressed through the coordinated, multidisciplinary approach.

COPD patients are frequently living in areas of deprivation. Glasgow City contains 3 in 10 of the 15% most deprived data zones in Scotland, which is the highest proportion for a local authority. Deprivation in patients with COPD is a significant predictor of the frequency and duration of hospital admissions, resulting in increased rates and longer lengths of stay especially during the winter. It is also linked to reduced secondary care outpatient attendance. More than 60% of patients that are supported by the Community Respiratory Team live in the most deprived areas of Scotland (Scottish Index of Multiple Deprivation), this figure rising to 74% when analysing the North East of the city.

The team supports patients with end stage COPD with a myriad of co-morbidities living with significant levels of complex physical, mental and social issues. The ethos of this multidisciplinary service surrounds the collaborative effort between the patient and the clinician. Delivering person-centred SMART goal setting and working towards a personalised outcome approach increases participation and engagement. The multidisciplinary service is then coordinated to meet the needs of the patient and their goal. Over 80% of patients decide and agree on their own individualised and meaningful goals. Patients score their own progress at the end of the intervention as a measure of their own success.

Example of a goal may be:

• "To feel more confident with my breathlessness and have fewer panic attacks when out walking to my local shop every day so I can have my independence back".

The team signposts to other agencies e.g. in the third sector and utilises community services such as befriending, hospice or services such as Community Connectors to reduce social isolation in this client group. The most common referrals, in order of frequency are: financial inclusion, social care direct, hospice and pulmonary rehabilitation.

Reduced impact of disease and improved quality of life has been demonstrated through validated outcome measures of patients who are supported by the Community Respiratory Team. Statistically significant increases in both the COPD Assessment Test ( CAT ) and EQ5DL Quality of Life measures are shown. Significant average improvements of CAT score pre- and post-input have been delivered. This figure was a substantial 5, with the authors of the assessment noting 2 as being clinically significant. Likewise sizeable average increases of 13% in a patient's quality of life are shown.

Virtual Ward Rounds

Development of interface joint working through a "virtual MDT ", led by the consultant respiratory physician, allows clinicians in the Community Respiratory Team to discuss current patients on their caseloads facilitating secondary assessment, opinion and input. For example, this could include: addition and optimisation of medication, organisation of investigations and review of chest X-rays/ CT s, decisions for clinic reviews plus educational sessions. This streamlines the referral process for this patient group for secondary referral. The weekly treatment plan of 10 – 12 complex patients are discussed as a team with the plans and outcomes being communicated on Clinical portal but also directly with the GP .

The service has been warmly welcomed by GP s, who are the largest referral group into the service. The team has had a positive impact on primary care by freeing up GP time. 75% of 70 GP s surveyed reported a reduction in the number of home visits and 63% reported that patients were able to self-manage their condition more effectively with 60% specifically being around optimisation and use of inhaled therapies. 85% of GP s rated the service as good or very good. Ongoing engagement sessions with GP continually increase awareness and use of the service.

The service aims to be easily accessible to people with COPD in Glasgow as Marianne Milligan explains:

"We support patients in their home making sure they have an appropriate level of input and care to safely and effectively help them recover. We then look at how we can help them to optimise their own health, what they can do to help their symptoms, particularly of breathlessness, and ensure they have an understanding of their condition so they know how to control their own health. They often have a lack of confidence in how active they can be as breathlessness leads to feelings of anxiety and results in inactivity. By providing them with a rounded approach with all members of the team working towards the patient's goal we support people to be as active and engaged in their surroundings and community as much as possible and their quality of life is massively enhanced as a result. Once they have achieved their goal, we discharge them, however patients can then self-refer into our service when they are becoming unwell. This can greatly relieve any anxiety as they know our team, they know who to call and we can see them that day if required. There are continual increases in patients self-referring into the service and patients are no longer waiting to become so unwell that they need a hospital admission and instead contacting us earlier in their exacerbation. All these factors are leading to a trend of reductions in hospital admissions being shown in Glasgow".

Over 90% of patients supported by the service are graded on the MRC Breathlessness Score as being 4 or 5 (grade 5 being they are breathless when getting dressed). A significant proportion of COPD patients are entering the final stages of their life and the Community Respiratory Team also works with them to create anticipatory and end of life plans.

Combined Respiratory Services

Establishing patient pathways between the combined Glasgow Respiratory services of the Community Respiratory Team, Pulmonary Rehabilitation classes and Hospital-based Respiratory Nursing Teams have considerably improved service delivery ensuring the patient is seeing the right person at the right time.

Investing in training has led to Advanced Practitioner qualification by the majority of clinicians who work with acutely unwell patients.

£1m Savings

The pilot project delivered net savings of more than £1 million a year and avoids, on average, 45 admissions a month. Patient quality of life has improved and GP s are fully onboard with the service. NHS Greater Glasgow and Clyde has now provided full funding for the COPD service and believes there is potential to scale the project to the NHS Greater Glasgow and Clyde area and to apply similar approaches to other long-term conditions. Additional future plans include: increasing to a seven day service, improving links with Scottish Ambulance Service, and increasing presence of health professionals in the Emergency Department to improve the turnaround of patients at the front door towards community support.

The team's success has been recognised and includes best COPD abstract selection in European Respiratory Society Conference, a Scottish Pharmacy Award, a Scottish Respiratory MCN award and a Health Improvement Scotland Research award

http://www.scottishpharmacist.co.uk/2016/09/30/scottish-pharmacist-awards-201516-winners/

http://www.healthcareimprovementscotland.org/news_and_events/events/5th_annual_research_symposium.aspx

Email: Syed Kerbalai

Phone: 0300 244 4000 – Central Enquiry Unit

The Scottish Government St Andrew's House Regent Road Edinburgh EH1 3DG

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• Published: 20 June 2018

“A palliative end-stage COPD patient does not exist”: a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD

• Charlotte Scheerens 1 , 2 ,
• Luc Deliens 1 , 2 ,
• Simon Van Belle 1 , 4 ,
• Guy Joos 2 , 5 ,
• Peter Pype 1 , 3   na1 &
• Kenneth Chambaere 1 , 2   na1  

npj Primary Care Respiratory Medicine volume  28 , Article number:  23 ( 2018 ) Cite this article

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• Chronic obstructive pulmonary disease
• Palliative care

Early integration of palliative home care (PHC) might positively affect people with chronic obstructive pulmonary disease (COPD). However, PHC as a holistic approach is not well integrated in clinical practice at the end-stage COPD. General practitioners (GPs) and community nurses (CNs) are highly involved in primary and home care and could provide valuable perspectives about barriers to and facilitators for early integrated PHC in end-stage COPD. Three focus groups were organised with GPs ( n  = 28) and four with CNs ( n  = 28), transcribed verbatim and comparatively analysed. Barriers were related to the unpredictability of COPD, a lack of disease insight and resistance towards care of the patient, lack of cooperation and experience with PHC for professional caregivers, lack of education about early integrated PHC, insufficient continuity of care from hospital to home, and lack of communication about PHC between professional caregivers and with end-stage COPD patients. Facilitators were the use of trigger moments for early integrating PHC, such as after a hospital admission or when an end-stage COPD patient becomes oxygen-dependent or housebound, positive attitudes towards PHC in informal caregivers, more focus on early integration of PHC in professional caregivers’ education, implementing advance care planning in healthcare and PHC systems, and enhancing communication about care and PHC. The results provide insights for clinical practice and the development of key components for successful practice in a phase 0–2 Early Integration of PHC for end-stage COPD (EPIC) trial, such as improving care integration, patients’ disease insight and training PHC nurses in care for end-stage COPD.

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Chronic obstructive pulmonary disease (COPD) is one of the leading causes of death, 1 with an illness trajectory characterised by a progressive and inexorable decline interlaced with acute exacerbations. 2 People with end-stage COPD (which we chose to define as ‘mostly GOLD stage III or IV 3 and low to very low functioning’, although no clear definition of severe, very severe or end-stage COPD is available in literature), mainly suffer from symptoms such as dyspnea, pain, fatigue, anxiety and low mood, leading to a poor quality of life in the final stages of the disease. 4 Despite numerous therapies to treat symptoms, end-stage COPD impacts heavily on emotional and social functioning and daily activities. 4 Their physical and psychosocial symptoms are poorly addressed. 5

We know from former research that palliative care (PC), if integrated earlier than the final weeks of life with standard care, can offer support for these symptoms as they in fact signal PC needs, and may have a positive impact on people with end-stage COPD. 6 , 7 The Global initiative for chronic Obstructive Lung Disease (GOLD) also recommends early intergrated PC as a way to improve symptoms that reflect PC needs (such as dyspnea, anxiety, pain, and fatigue), which would potentially be better treated if PC was not only introduced in end-of-life situations. 3

However, there is no unifying definition or common understanding in literature of early integrated PC. This might be due to the polymorphous nature of integrated care itself. 8 For this study, the meaning of early integrated PC can be derived from combining definitions of PC and Integrated Health Services given by the World Health Organization (WHO). The WHO definition of PC incorporates: (1) encouraged collaboration between all professional caregivers (which we define as general practitioners, specialist physicians, nurses, physiotherapists, dentists, pharmacists, midwives, and paramedics), in order to connect expertize; and (2) early assessment of PC, by integrating PC with disease based “curative” therapies. 9 Furthermore, the WHO definition of Integrated Health Services emphasises on “the management and delivery of health services so that patients receive a continuum of preventive and curative services, according to their needs over time and across different levels of the health system.” 10

Moreover, patients with end-stage COPD often die in intensive care units in hospitals or nursing homes rather than at home, 11 whereas end-stage COPD patients actually prefer home care, 12 and patients with all kinds of diseases wish to die at home. 13 If PC is provided at home by a PC nurse or PC professional, it can also improve quality of life and care, 14 , 15 increase the chance of dying at home 16 and reduce the burden of symptoms. 17 Moreover, early integrated palliative home care (PHC) can help to avoid hospital admissions and escalation of costs related to the final months of life for people with end-stage diseases. 18 Lastly, a qualitative study has shown that end-stage COPD patients have indicated needs for PHC and fully accept early integrated PHC. 19

Early integrated PHC for end-stage COPD patients in practice, however, is not without its challenges as the unpredictable illness trajectory and chance of survival can interfere with its early integration. 6

In Belgium, COPD accounted for 10.7% of all deaths, which made it the third most common cause of death in 2015. 20 Furthermore, a study in Flanders revealed that of all deaths from end-stage COPD in 2013, only 37.3% were referred to PC, of which 7.2% to PHC. For half of the referred patients, time of onset of PC was only six days prior to death. 21 Reasons for not referring end-stage COPD patients were according to the physicians due to a lack of time, because PC was not meaningful, or that PC needs were addressed in standard care. 21 As research on implementing early integration of PHC for end-stage COPD is thin on the ground, with studies only exploring patients’ acceptance of integrated PHC, 19 investigating PC and end-of-life discussions for COPD in general 22 or not specifically focusing on end-stage COPD, 16 , 23 a more detailed examination of challenges and possibilities for early integration of PHC for end-stage COPD is needed to gain insight into reasons why early integration of PHC for end-stage COPD is currently lacking and how to tackle this.

Likewise, little is known about the opinions of involved parties in early integrating PHC for end-stage COPD, with the exception of patients' perspectives 19 as well as those of pulmonologists. 24 However, the views of general practitioners (GPs) and community nurses (CNs) on early integrated PHC for end-stage COPD are lacking. These perspectives are crucial in identifying specific reasons why implementing this type of care is difficult in end-stage COPD 25 , 26 as GPs and CNs in Belgium are active in primary and home care and well informed about PHC services. In order to gain useful data for clinical and policy-related solutions, this study aims to identify (1) barriers and (2) facilitators from the perspective of GPs and CNs for early integration of PHC in standard care for people with end-stage COPD. This qualitative study is performed as a part of a larger study to develop a complex phase 0–2 intervention trial on early integrated PHC for end-stage COPD (EPIC) in Flanders, Belgium.

Participant characteristics (Table 1 )

Three focus group interviews with GPs and four with CNs were held with a total of 28 GPs ( n  = 8, n  = 10, n  = 10) and 28 CNs ( n  = 4, n  = 7, n  = 5, n  = 12) that attended one of seven focus groups. The majority of participants were between 40 and 60 years old, and 32 were male. Clinical working experience was variable, with the largest groups (each seventeen participants) working for zero to nine years and working for 20–29 years. 32 of 56 participants did not introduce PC to end-stage COPD patients in the past year.

As we recruited GPs through local peer review groups and CNs through area-specific group meetings for six of the seven focus group conversations, not all participants of these focus groups met the predefined inclusion criteria: 11 of 56 participants did not have five years or more clinical working experience, and nine participants did not care for at least three end-stage COPD patients in the last year. We also found out during the focus groups that ten participants were member of a PHC team as a PHC physician or PHC nurse, either currently or in the past, without our prior knowledge.

Barriers to early integration of PHC for end-stage COPD (Table 2 )

Disease trajectory of end-stage copd.

Because of the unpredictable disease trajectory of end-stage COPD (1.a), people with end-stage COPD often experience unexpected exacerbations or other infections, and a sudden death. This made it difficult to decide when or whether PHC is needed. According to participants in FG2gp and FG5cn, it was also unclear when to go from curative care to PHC as the deteriorating functioning of the patient is often invisible (1.b) to the professional caregiver as the disease evolves slowly.

I once saw a terminal COPD patient, with heavy exacerbations, as if he was almost gone, but he can now live further and wrestle through all of that again. And I think that maybe that has something to do with it, that we [professional caregivers] don’t quite see it [deterioration] like that, right? (FG1, GP).

Perceived patient attitudes

A lack of disease-insight (2.a) was mentioned, as some end-stage COPD patients did not seem to understand cognitively the severity of end-stage COPD and the possibility of death. This made it difficult for professional caregivers to start talking about PHC because the patient did not grasp the need for it. Participants associated this attitude more with their end-stage COPD patients than patients with other diseases such as cancer. Denial of the severity of end-stage COPD even when aware of the possible negative consequences was another example of lacking disease insight:

You also have these [end-stage COPD] patients, we see that visually, whose health is declining. Blue lips, blue as… They rarely accept that when you tell them [that they are going to die] - No, no… I am not going to die. That is the denial, that is that denial (FG5, CN).

Resistance towards care (2.b) was also mentioned, an attitude which depended on the patient’s personal context and personality. For example, some patients did not want further help from professional caregivers because they wanted to be left alone, while others refused it because of the wish to live life the way they wanted, thereby accepting the consequences. A participant explained that an end-stage COPD patient kept on smoking even when severely ill, stating it was too late for help anyhow. Other patients seemed to wait too long to contact a doctor, which made early integration of PHC impossible as they died before care could be given.

But, information… there are many who do not want to hear it [information about further care possibilities such as palliative home care], they [the patient] tell us [professional caregivers] to leave them alone (FG7, CN).

Finally, participants mentioned that the attitude towards PHC was one of resistance because of the perceived affiliation with death (2.c), as seen in this quotation:

We [professional caregivers] try to stimulate that [palliative home care] for our [end-stage COPD] patients, but it is really hard. Palliative care has a bad connotation, you know. When patients hear they are palliative, they believe they are going to die (FG5, CN).

Professional caregiver practices

The lack of a coherent and proactive care plan (3.a) in professional caregiver practices formed a barrier, firstly because professional caregivers experienced care coordination problems in the home situation of patients with end-stage COPD. For example:

On improving care: you have the cleaning help, the family help, the nurses and so on, and they all have something to say about the [end-stage COPD] patient, like maybe you should try this or that sometime, maybe try that again, and then you, the general practitioner, arrives there, and there you are, with your scientific background and all the scientific evidence that you have learned, and all of those suggestions are fired at and you have to say “yeah, but that will not help, and that will not help either, and I sometimes find it difficult, that everyone [professional caregivers] has their opinion (FG1, GP).

Secondly, conflicting therapies between professional caregivers were said to prevent the early integration of PHC as well:

To me, a good general practitioner is someone who does nothing. He only manages and says “I think you are suffering from that illness, you should go see that specialist physician.” I think that is great. Because they cannot know everything, I fully agree. But, too often, you see general practitioners who think they have the answer, while they are totally wrong and that gives complications when it comes to patient compliance. Like when you [and end-stage COPD patient] show up with a specialist’s advice and your general practitioner says “hmm, you should not do that”. Come on, that cannot happen (FG5, CN).

Next, insufficient experience with and a negative vision of PHC for end-stage COPD (3.b) was noted during the focus groups as PHC in itself was either not well known or its usefulness for end-stage COPD was not clear to participants due to a lack of experience in PC for this particular patient group. During the focus groups, participants often claimed that ‘a palliative end-stage COPD patient does not exist’. Others asked the moderator to explain what PHC could do for people with end-stage COPD:

The reason I would not immediately use PHC is that I need to know what they can offer in that context. So we want them to be able to offer comfort at a critical moment. But what can they do for someone who is suffocating? So then we need to hospitalize them after all (FG2, GP).

Related to this, professional caregivers did not clearly see the added value of early integrated PHC for end-stage COPD as PC is perceived to curtail all curative options for the patient. Stopping curative care and starting PHC was said to feel unnatural, especially for GPs, as they want to cure the patient.

Education for professional caregivers

Basic and continuing education about PHC and its advantages for end-stage COPD seemed to be lacking, which also influenced the barriers about professional caregiver practices:

I wonder, if we, as general practitioners, would be better educated and could prescribe oxygen, how we could quickly move on to be giving oxygen. I think that would prevent a lot of hospitalizations (FG3, GP).

Healthcare and PHC system characteristics

Timeslots for professional caregivers’ consultations which are too short (5.a), due to the fact that professional caregivers are paid per consultation, prevented discussions about early integrated P(H)C as this topic requires a lot of time to explain properly. Furthermore, coordination between hospital and home care (5.b) was inefficient, observed in a lack of guidance on how to early integrate PHC into the home situation of an end-stage COPD patient in order to keep the patient at home until death. Also, a lack of concrete guidance after discharge from hospital to home was mentioned, with end-stage COPD patients sometimes leaving the hospital without knowing what the next steps of care are:

I [general practitioner] never knew anything [of information given by someone] from the hospital for COPD (FG2, GP).

Simply said: ‘go home and handle it [the situation where the end-stage COPD patient is in] yourself (FG2, GP).

The reimbursement system for PHC (5.c) in Flanders is by law restricted to three months, with the possibility of making a second claim, 27 which can be interpreted as an existing structural barrier for referring patients to PHC. To receive this reimbursement, a patient needs to have a legal palliative status, which depends on life expectancy, i.e., between three months and 24 h before death (this rule was still legal at the time of the focus groups). As the unpredictable disease trajectory of end-stage COPD makes it hard to predict whether a patient is in the final three months of life, this was also for the participants seen as a barrier. Although early integrated PHC can be provided if patients do not have this status, and costs related to PHC are reimbursed even if patients are still alive after three months, GPs and CNs saw this restriction of three months as a psychological obstacle to early integrating PHC:

Three months, right, if you want to request palliative care for three or six months, we do not know whether that will be the case [for a end-stage COPD patient], and that keeps you from proposing this [palliative home care] to the patient, because of that palliative status (FG3, GP).

Communication

A lack of proper communication between the involved professional caregivers (6.a GP), pulmonologist, CNs and PHC nurses) was observed due to different roles and perspectives on care:

Specialists also speak from an ivory tower. I’m thinking of a woman [with end-stage COPD] now, who is terminal, and sure, she has a lot of pain and she uses tramadol [an opioid]. Step one in the treatment, according to them [pulmonologists], is medication because it suppresses the respiratory system. But, come on. That is easy to say behind your little desk, wearing your suit, is it not? (FG2, GP)

There was also confusion about who should take the initiative to early integrate PHC for the patient, along with miscommunications in referral letters, cited by this quote:

Referral letters mentioning no possibilities for curative treatment for a cancer patient [from oncologists to general practitioners] often state: “referral to palliative team”. But with terminal COPD it [the referral letter from pulmonologists] just says “lung function borders livability”. (FG2, GP).

Another barrier was communication between professional caregivers and patients with end-stage COPD (6.b), as talking about further care and PHC needs with the patient was mentioned to be difficult during consultations, especially when patients’ family members were involved.

If his wife is not at home, then he [end-stage COPD patient] is incredibly chatty and he can pour out his heart: “and I do not want to live anymore and I want to die.” And when his wife gets back, the first thing he says: “do not say anything, my wife is here”. But come on, we only get to talk to him for fifteen minutes and the rest of the day he is with her. You realize he cannot discuss his illness with her, right? (FG5, CN).

Lastly, all focus groups mentioned communication problems due to the terminology of PHC, stating that the term has negative connotations for end-stage COPD patients and professional caregivers, as it implies impending death.

Facilitators for early integration of PHC for end-stage COPD (Table 3 )

Trigger moments.

Participants expressed the need for trigger moments in the course of the disease trajectory of end-stage COPD as a way to facilitate early integration of PHC. Examples were after a hospital admission (1.a) as a moment to start talking about the future or reorganising care, a couple of exacerbations (1.b), when the patient becomes oxygen-dependent (1.c) or housebound due to a loss of functioning (1.d). These moments were seen as turning points when the patient realises the severity of the disease more clearly:

Someone [end-stage COPD] who goes home after hospital and gets oxygen, that is an important thing to work on as a team [of professional caregivers]. And that [early integrated PHC] is something we [professional caregivers] could then discuss (FG2, GP).

For example, I think that starting oxygen at home is quite the occasion [for early integrating PHC]. After all, it announces a huge phase (FG2, GP).

Involvement of informal caregivers

Mainly GPs thought that providing more information about PHC and increasing positive attitudes towards it among informal caregivers (such as family members, volunteers of PHC teams) could encourage the latter to support the end-stage COPD patient with early integrated PHC:

We [general practitioners] are often asked by the family to come and talk without the patient being present. And then we discuss what will happen, what the palliative home care team could do, practical agreements (FG2, GP).

When talking about knowledge and care for end-stage COPD, there was an urgent need for more information about early integrated PHC for end-stage COPD and clinical implementation of it given in standard and further education of professional caregivers. This could better prepare professional caregivers in supporting end-stage COPD patients.

Advance care planning (ACP) as a standard procedure in clinical practice for all end-stage COPD patients could facilitate conversations about the future, further wishes and needs. This could trigger professional caregivers and COPD after end-stage patients to think about integrating PHC earlier. ACP is already a practice in nursing homes in Belgium:

Because at that moment [going to a nursing home] there is a very important changeover in the life stage of a person. And because it is actually common to do advance care planning for someone who ends up in a nursing home. That is a procedure (FG2, GP).

Reply: we should do this for all our chronic ill patients (FG2, GP).

Enhancing communication from professional caregivers towards end-stage COPD patients (5.a) could be a facilitator, by using practical matters such as ‘where would you like to die’ as a way to start talking about early integrated PHC. Another possibility could be giving clear-cut information about end-stage COPD and future chances of survival in order to make the patient realise the severity of their disease:

You do not need that [advance directive] if you are already at the point of dying. But for the things that might come. I think about an end-stage COPD patient who always says that “they [professional caregivers] will never put me on those machines [in the hospital] anyway, right?”. [General practitioner says:]”Sure, but then we do really have to put that on paper, right?” And that is where you have a lead [to start talking about early integration of PHC]. Those practical questions are hints to talk about how far you want to go [in future care] (FG2, GP).

Patients should be correctly informed about further possibilities, about what medical care can still do for them. And then the conversation should mainly be about what the patient still wants and what he or she still expects and, and good agreements will have to be made about what will and what will no longer happen to the patient. And if hospitalization is out of the question, how are we [professional caregivers, patient and informal caregivers] going to organize the care package, and especially, with what objective? (FG4, GP).

Furthermore, even if some respondents felt the need to change the term PHC to supportive home care, others stated that focusing on symptom management, comfort and psychosocial support in conversations with end-stage COPD patients could also help the latter to accept the content of P(H)C:

You do not have to use the term palliative if you can say okay, from now on we will give you [end-stage COPD patient] maximum comfort and we will do everything to take care of you as good as possible without calling that directly palliative [care] (FG2, GP.)

Finally, improving communication between professional caregivers (5.b) by appointing a care coordinator to facilitate the information flow between professional caregivers involved in hospital and home settings and integrating different professional caregivers’ perspectives could increase early integration of PHC. If specialist physician’s medical information would be combined with information from home and primary caregivers this could provide a better view of the patient’s personal, medical and social context. A care coordinator could also introduce the advantages of early integrated PHC to the patient and their informal caregivers, as this function could have more time for these conversations than other currently involved professional caregivers:

Looking at each end-stage COPD patient to see which network can be provided and making connections with specialists' network. “Which nurse, which GP would you [the patient] like?” Then every end-stage COPD patient will have their own network up to informal care (FG5, CN).

Main findings

The results of this study have revealed perceived barriers and facilitators from the perspective of general practitioners (GPs) and community nurses (CNs) to early integration of palliative home care (PHC) in standard care for people with end-stage COPD in Flanders, Belgium. The categories of barriers were (1) unpredictable exacerbations and death in COPD and invisible deterioration of functioning; (2) perceived patient attitudes such as a lack of disease insight and resistance towards care; (3) professional caregiver practices with a lack of a coherent and proactive plan, insufficient experience and a negative view of PHC for end-stage COPD; (4) not enough focus on knowledge and advantages of PHC and palliative care (PC) for end-stage COPD in professional caregivers’ basic and continuing education; (5) healthcare and PHC system characteristics: too short consultations, insufficient coordination between hospital and home care, and a reimbursement system for PHC that is based on life expectancy; and (6) communication: a lack of and unclear communication about care possibilities for end-stage COPD patients between professional caregivers, and a lack of clear information about PHC between professional caregivers and their patients.

The categories of facilitators were (1) trigger moments to start talking about early integration of PHC: such as after hospitalisation, after a couple of exacerbations, when an end-stage COPD patient becomes oxygen-dependent or becomes housebound; (2) involvement of informal caregivers in early integrated PHC for COPD; (3) information about the advantages of early integrated PHC for end-stage COPD in professional caregivers’ education; (4) including advance care planning (ACP) as a part of healthcare and PHC systems and (5) enhancing communication between professional caregivers by installing a care coordinator, and enhancing communication between professional caregivers and end-stage COPD patients by explaining better and giving practical examples of what early integrated PHC could mean for end-stage COPD.

Interpretation of findings in relation to previous research

The following barriers were in line with previous research on (communication about) PC in general, early integration of PHC or PC for end-stage COPD: 1.a: unpredictable exacerbations and death; 6 3.b.2: continuation of life-prolonging care in end-stage COPD; 28 5.a: lack of time during consultations to start talking about PHC and further care; 28 5.b: no coordination between hospital and home care; 24 6.b.1: not discussing PHC, PC and PC needs in detail during consultations; 29 6.b.4: professional caregivers’ fear of talking about PHC because of the patient’s reaction. 30

For facilitators we saw similarities with former studies on trigger moments 1.a: after hospital admission, 31 and 1.c: when an end-stage COPD patient becomes oxygen-dependent; 32 3) professional caregivers’ education, with the importance of providing more focus on (implementation of) early integrated PHC; 24 , 33 4: health system and PHC system characteristics with reported advantages of ACP as a way to introduce PHC; 24 5.a.2: enhancing communication between professional caregivers and end-stage COPD patients by better informing the latter about PHC possibilities; 24 5.b: improving communication between professional caregivers by appointing a care coordinator. 24

Due to the specific focus on early integrated PHC for end-stage COPD, this study also identified new insights into barriers on conflicting therapies and insufficient communication between professional caregivers and a lack of guidelines after hospital discharge. A common denominator might be insufficient or non-existent communication between hospital and home care settings. 24 Professional caregivers active in hospital and home care might need to cooperate better and more often. By doing this, one could adjust care and therapies more adequately and better meet the patient’s wishes, 34 while not forgetting to involve the patients and their informal caregivers in discussion about care. One option could be an electronic patient file accessible to the patients, their informal caregivers, and the professional caregivers in the hospital, the primary and the home care settings. 35 This electronic patient file could contain a classification system that emphasises patients’ (PHC) needs and functioning instead of the disease, such as the comprehensive ICF core set for COPD, developed by the World Health Organization. 36 Another possibility could be organizing multidisciplinary consultations consistently, each time a serious deterioration of functioning occurs, similar to multidisciplinary oncology consultations in Belgium. More research is needed to explore whether these examples could work for early integrated PHC in end-stage COPD.

Although it is known that PC and PHC increases quality of life for people with end-stage COPD when integrated early, 7 the content of PHC needs adaptation if integrated before the terminal stage, depending on the disease population and the personal needs of the patient. 37 Research has shown the need for management of troublesome symptoms and short-term PC if integrated early. 6 Managing breathlessness or relieving psychosocial symptoms which are often seen in end-stage COPD despite receiving optimal medical care 5 might require the involvement of other care professionals besides a PHC nurse, such as a physiotherapist, psychologist or social worker. Re-evaluating the content of PHC if given early and integrated for end-stage COPD is therefore necessary in order to be fully effective.

The large volume of results on professional caregiver-patient communication showed plenty of room for improvement. Participants claimed that some end-stage COPD patients did not fully understand the disease, sometimes refused care and often interpreted the term PC or PHC as a sign of impending death. However, previous research found that patients with end-stage COPD did express the desire to talk about end-of-life care 30 and fully accepted PHC and early integrated PHC. 19 This could thus mean that participants in our study either misinterpreted their end-stage COPD patients’ wishes and communication preferences about PHC, or that their end-stage COPD patients did not clearly share their care needs which would confirm other research finding that patients often do not fully understand the severity of end-stage COPD, 38 or did not know what future care they would prefer. 22 In contrast, another study found that patients did convey the need for involvement and education about end-stage COPD and PC, which could improve PC communication. 39 A previous trial tested patient feedback by giving self-reported patient questionnaires on end-of-life preferences for communication, therapy and experiences. These were then given to the involved professional caregivers which resulted in better patient-professional caregiver communication. 40 As literature and the results of our study did not provide a clear answer to these communication issues between professional caregivers and patients, further testing of communication systems is suggested, while improving undergraduate and postgraduate education for professional caregivers on bad news delivery, ACP and shared decision making.

The unpredictable disease trajectory of end-stage COPD was mentioned as a factor impeding (timely) referral to and conversations about early integrated PHC, somewhat confirmed by research stating the need for clear identification criteria for pulmonologists to introduce PC in a timely manner. 24 The trigger points identified in the results of our study could respond to this need, as they signal an increase in PHC needs due to a decline in functioning of the end-stage COPD patient such as after a hospital admission, a couple of exacerbations, oxygen-dependency or becoming housebound. These trigger moments were not related to life expectancy as the latter was seen as an inappropriate basis for deciding whether early integrated PHC was needed, which is in line with a study proving that criteria to predict survival in end-stage COPD do not work. 41 Moreover, at the time of the focus group conversations, eligibility for PHC in Belgium was dependent on a palliative status based on life expectancy (less than 3 months before death), which was seen as a psychological barrier to early integrating PHC as the unpredictability of COPD prevents professional caregivers from deciding whether an end-stage COPD-patient is likely to survive for three months. Nevertheless, somewhat contrary to our results, a previous qualitative study with end-stage COPD patients found that admission for exacerbation was considered too chaotic and not an appropriate occasion to discuss PC, although it could be a milestone leading to PC discussions. 31 Pulmonologists also stated that conversations about treatment preferences should be initiated when an end-stage COPD patient is stable. 32 It is important to mention that the trigger moments in the results of our study could give rise to an opportunity for talking about early integrated PHC as these moments could help the end-stage COPD patient realise the severity of the disease, but initiating the conversations should take place when the end-stage COPD patient is back in a stable context, preferably at home, after the events had occurred. More research is needed to explore the feasibility of addressing PHC needs following the different triggers.

Strengths and limitations

The research team involved in data analysis were people with different backgrounds including psychology, sociology, general practice, primary care, PHC, pulmonology, and oncology. This enhanced the interpretation of the data due to the multitude of perspectives. Furthermore, to the extent of our knowledge, this is the first qualitative study reporting GPs’ and CNs’ insights into barriers to and facilitators for early integration of PHC for people with end-stage COPD. We obtained a varied sample of GPs and CNs with different backgrounds, care experience and perspectives on PHC. The high number (56) of participants in seven different focus groups also constituted a key strength of this study as it improved transferability of the findings beyond the context of the individual participants’ experiences.

However, it is worth noting that due to altering recruitment strategies at the start of the study not all participants reached the inclusion criteria we predefined for the study. Eleven out of 56 did have less than five years working experience, and nine of 56 participants did not have COPD patients in their practice in the past year. This could have influenced the results as professional caregivers with less working experience or less experience with COPD patients might have faced difficulties in answering questions about early integration of PHC for end-stage COPD, as they could have lacked the clinical experience to relate their answers with. Nevertheless, we believe that due to the setting of a focus group, where groups were formed with other participants having many experience, this limitation did not compose any substantial problems to the quality of the conversations and to the results. During the focus group conversations, the experienced professional caregivers inspired the less experienced participants to reflect critically on the questions asked by the moderator. The strength of the answers from focus group conversations also relied on the vivid discussion between the participants who challenged each other in giving answers to questions. Therefore, we did not exclude the less experienced participants from the analysis as their participation helped in obtaining the results.

Furthermore, 32 of 56 participants had never introduced end-stage COPD patients to PC or PHC in the past year. This might have affected the results due to a lack of experience with PC or PHC for end-stage COPD between the participants. However, this does not mean that the participants did not know what PC or PHC can do for patients, as they had have experience with PC, but mainly for cancer patients. Therefore, we believe that these participants were able enough to form an opinion on why they never or hardly introduce PHC for end-stage COPD patients compared to cancer patients and what could be done to alter this.

Another limitation of this study was the lack of insights from other professional caregivers involved in care for end-stage COPD patients, such as pulmonologists and physiotherapists. Neither did we consult patients with end-stage COPD or informal caregivers. However, gaining insight into early integrated PHC was the primary focus of the study and therefore we interviewed professional caregivers active in primary and home care. Notwithstanding these limitations, the results could provide valuable information on the development of feasible interventions, practical implementation and policy-related recommendations on early integrated PHC for end-stage COPD.

Implications for policy and practice, and future research

Given the complexity of implementing early integrated PHC for end-stage COPD, we suggest a multilevel strategy approach in order to successfully change related policy and practice. 42 The micro level could be adapted by increasing patients’ insight into (end-stage) COPD and early integrated PHC using government-funded campaigns about PC and PHC on national television which could raise awareness of PC and PHC among the general population. Meso-level changes could be on focusing professional caregivers’ basic and continuing education more on clinical PHC practice through obligatory internships in PC and PHC settings, enhancing knowledge about (end-stage) COPD, PC and PHC needs, advantages of early integrated PHC, and focusing on skills in communication and ACP.

Finally, macro change by adapting the healthcare and PHC system would be needed, for example by disconnecting eligibility for palliative status and reimbursement of PHC-related costs from life expectancy and instead linking it to lower functioning, PC and PHC needs in end-stage COPD. 27 Although the Flemish government has decided to change this system, the law has not yet been changed. Additionally, incorporating ACP as a standard procedure within early integrated PHC to facilitate patient-professional caregiver communication, and appointing care coordinators as an additional role in existing care could provide continuous support for end-stage COPD patients over different care settings. 42 However this would require an economic costs and benefits analysis.

As this study was performed to develop the phase 2 EPIC trial, the results suggested using a comprehensive PHC model in the intervention with inclusion criteria representing high PHC needs as a proxy to start early integrated PHC for end-stage COPD. 43 Based on our results, these inclusion criteria representing high PHC needs could be GOLD III or IV combined with low functioning such as frequent hospitalisations for COPD, exacerbations due to COPD, becoming housebound or oxygen-dependent. Key components could cover several dimensions of appropriate PHC, from improving patient’s disease insight, to training the PHC team in knowledge and therapy for end-stage COPD, and integrating care by trying to improve cooperation and communication between involved professional caregivers. Previous interventions in early PC and PHC for end-stage COPD mainly focused on caring for one symptom, for example managing breathlessness 44 or provided training about one care aspect, such as nutrition. 23 Instead, we suggest using several components to provide a holistic PHC approach, in order to fully tackle the lack of early integrated PHC for people with end-stage COPD.

Our study uncovered barriers in terms of the disease trajectory, patient attitudes, professional caregivers’ practices, the healthcare and PHC system and communication problems. Facilitators provided possibilities at many levels for a successful implementation of early integrated PHC in practice or development of early integrated PHC interventions for end-stage COPD. This requires a multilevel approach with the involvement of professional caregivers active in hospital and home settings, while not forgetting to actively include end-stage COPD patients and informal caregivers in the process.

Study design

A qualitative approach using focus groups was chosen for its group dynamic features that stimulate interaction between participants and allow the moderator to use more active interview techniques than with face-to-face interviews. 45 This approach was supported by the methodological orientation of grounded theory, 45 as we constructed new insights based on data obtained from the focus groups. The research protocol and topic guides were approved by the Ethics Committee of Ghent University Hospital (Reference: 2016/0171).

Study setting

The study was based in workplace settings in urban and semi-urban regions in Flanders, Belgium, in 2016, as it was part of the development of a phase 2 intervention on early integration of PHC for end-stage COPD in Flanders, Belgium.

Study population and sampling

The study population consisted of GPs and CNs involved in primary and home care settings. In selecting the participants, three criteria were stipulated as a guiding line for recruitment: (1) Dutch speaking; (2) at least five years experience as a GP or CN; (3) having cared for at least three end-stage COPD patients. We also took into account variation in semi-urban and urban areas. We then used ‘convenience sampling’. With this technique, the sample was composed of participants or groups who met the criteria and who were available or signed up first. 46 However, individual recruitment of GPs and CNs for focus group participation was difficult and we had to change strategy. Only one focus group with CNs was composed by gathering independent CNs from the same region. This was done by contacting individual CNs from one urban area by phone through a contact lis fron the Flemish Professional Association for Independent Nurses which is available online: http://www.verplegingthuis.be/ .

As a solution, we used beside the convenience sampling technique, a purposive sampling technique which allowed the research team to select participants based on the researchers’ judgment. We organized focus groups which consisted either of one regionally composed group of GPs or one regionally composed group of CNs. This type of recruitment could offer us a sample of GPs and CNs representing a wide range of experience related to the topic (maximum variation sampling), even if not all participants would meet the inclusion criteria. For GPs these were local peer review GP groups (LOK): geographically determined groups of GPs from both individual and group practices. They meet four times a year to share and critically evaluate their medical practice (peer review) and to improve their quality of care. For CNs these were regionally composed groups from the National Association of Catholic Flemish Nurses and Midwifes (NVKVV) who meet monthly to discuss their practice and share work-related experiences. 47

Recruitment strategy

The participants were initially identified by a member of the research team and other key contacts who were either a GP, CN, or policy member of organisations involved in community care. Further recruitment for GPs was undertaken by contacting several people responsible for local peer review (LOK) GP groups in Flanders in person, by phone or e-mail. Further recruitment of CNs were recruited by contacting the “Wit-Gele Kruis”, a Flemish organisation for CNs. This organisation was asked to help with the recruitment by forwarding the call for participants to its members. With the help of this organisation, we contacted those responsible for regionally composed groups of CNs by phone to organise the focus group when that group had a meeting. Potential groups of GPs or CNs were invited to take part in a focus group with e-mails containing information about the study and participation. Suitable dates and venues were arranged with the people in charge of the local peer review GP groups or regionally composed CN group, if all group members agreed to participate in the study.

Data collection

Recruitment and focus group conversations took place between March and September 2016. A semi-structured topic guide (pilot tested), consisting of four main questions and a set of prompts for each question, was developed and reviewed within a multidisciplinary research team of sociologists, a GP, a lung specialist and an oncologist (for content of the topic guide: Fig. 1 ). End-stage COPD was described during the focus group as mostly GOLD stage III or IV 3 and low to very low functioning’.

Topic list based on research questions

Each focus group was moderated by one male senior researcher (sociologist or psychologist) and observed by one female junior researcher (sociologist or psychologist) who made field notes, all experienced in conducting focus groups due to training in former education and conducting qualitative research in previous studies. The focus groups took place in a quiet room, were conducted in Flemish, lasted on average one and a half hours and were audio taped, for which all participants gave informed written consent. All participants filled in a short questionnaire regarding their own demographic characteristics, clinical experience and experience with care and PC or PHC for end-stage COPD. After conducting two focus groups with GPs, the research team slightly adapted the topic list by leaving out the first question on perceived main problems for people with end-stage COPD, as this question did not lead to significant information regarding early integrated PHC. We continued recruitment and sampling until data saturation was achieved. Saturation was defined when no new themes on barriers and facilitators occurred during the focus group.

Data analysis

The focus groups were completely transcribed verbatim. Then we used NVivo 9 software to code and analyse the data according to the research questions. Two researchers (CS and KC) first read and coded the data in themes which were derived from the data from four full focus group transcripts and compared similarities and differences in their analyses until a primary coding framework was constructed. Then all seven focus group transcripts were independently read, compared with the primary coding framework by the two researchers and these results were discussed with all members of the research team. Codes were added, modified or merged when necessary. A third and fourth researcher (PP and LD) made final changes to the codes, which were approved by the other two coding researchers. Once coding was finalized, all transcripts and the coding framework were revised and refined, resulting in (sub)categories of barriers and facilitators. Quotations were selected and approved by the research team to illustrate the results. Transcripts were not sent back to participants for correction but respondent validation of the results was undertaken by sending the results of the study by e-mail to all participating GPs and CNs for consent.

Data availability

The data that support the findings of this study are available from the corresponding author (C.S) upon reasonable request.

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Acknowledgements

The authors would like to thank all participating GPs and CNs for their efforts in providing data, Prof. Dr. Koen Pardon and Naomi Dhollander, MSc, for their efforts in organizing and executing the focus groups, as well as Helen White for her language editing. SBO/IWT (grant number 140009).

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These authors contributed equally: Pype, Peter and Chambaere, Kenneth.

Authors and Affiliations

End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium

Charlotte Scheerens, Luc Deliens, Simon Van Belle, Peter Pype & Kenneth Chambaere

Department of Internal Medicine, Ghent University, Ghent, Belgium

Charlotte Scheerens, Luc Deliens, Guy Joos & Kenneth Chambaere

Department of Family Medicine and Primary Health Care, Ghent University, Ghent, Belgium

Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium

Simon Van Belle

Department of Respiratory Medicine, Ghent University Hospital, Ghent, Belgium

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C.S., L.D., K.C., G.J., S.V.B., and P.P. were involved in the study conception and design and in obtaining ethical approvals. C.S. and K.C. were involved in the data collection. C.S., K.C., and P.P., experienced qualitative researchers with backgrounds in sociology (C.S. and K.C.) and medical, palliative home and primary care (P.P.) analysed the data. Analysis was discussed with all contributing authors. The first and following drafts were written by C.S. All authors commented on the first and following drafts, revised them critically, and agreed with the final version. All authors are accountable for all aspects of the work.

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Correspondence to Charlotte Scheerens .

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Scheerens, C., Deliens, L., Van Belle, S. et al. “A palliative end-stage COPD patient does not exist”: a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD. npj Prim Care Resp Med 28 , 23 (2018). https://doi.org/10.1038/s41533-018-0091-9

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Factors associated with non-fatal heart failure and atrial fibrillation or flutter within the first 30 days post COPD exacerbation: a nested case-control study

• Emily L. Graul 1 ,
• Clementine Nordon 2 ,
• Kirsty Rhodes 2 ,
• Shruti Menon 3 ,
• Mahmoud Al Ammouri 1 ,
• Constantinos Kallis 1 ,
• Anne E. Ioannides 1 ,
• Hannah R. Whittaker 1 ,
• Nicholas S. Peters 4 &
• Jennifer K. Quint 1  

BMC Pulmonary Medicine volume  24 , Article number:  221 ( 2024 ) Cite this article

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An immediate, temporal risk of heart failure and arrhythmias after a Chronic Obstructive Pulmonary Disease (COPD) exacerbation has been demonstrated, particularly in the first month post-exacerbation. However, the clinical profile of patients who develop heart failure (HF) or atrial fibrillation/flutter (AF) following exacerbation is unclear. Therefore we examined factors associated with people being hospitalized for HF or AF, respectively, following a COPD exacerbation.

We conducted two nested case-control studies, using primary care electronic healthcare records from the Clinical Practice Research Datalink Aurum linked to Hospital Episode Statistics, Office for National Statistics for mortality, and socioeconomic data (2014-2020). Cases had hospitalization for HF or AF within 30 days of a COPD exacerbation, with controls matched by GP practice (HF 2:1;AF 3:1). We used conditional logistic regression to explore demographic and clinical factors associated with HF and AF hospitalization.

Odds of HF hospitalization (1,569 cases, 3,138 controls) increased with age, type II diabetes, obesity, HF and arrhythmia history, exacerbation severity (hospitalization), most cardiovascular medications, GOLD airflow obstruction, MRC dyspnea score, and chronic kidney disease. Strongest associations were for severe exacerbations (adjusted odds ratio (aOR)=6.25, 95%CI 5.10-7.66), prior HF (aOR=2.57, 95%CI 1.73-3.83), age≥80 years (aOR=2.41, 95%CI 1.88-3.09), and prior diuretics prescription (aOR=2.81, 95%CI 2.29-3.45).

Odds of AF hospitalization (841 cases, 2,523 controls) increased with age, male sex, severe exacerbation, arrhythmia and pulmonary hypertension history and most cardiovascular medications. Strongest associations were for severe exacerbations (aOR=5.78, 95%CI 4.45-7.50), age≥80 years (aOR=3.15, 95%CI 2.26-4.40), arrhythmia (aOR=3.55, 95%CI 2.53-4.98), pulmonary hypertension (aOR=3.05, 95%CI 1.21-7.68), and prescription of anticoagulants (aOR=3.81, 95%CI 2.57-5.64), positive inotropes (aOR=2.29, 95%CI 1.41-3.74) and anti-arrhythmic drugs (aOR=2.14, 95%CI 1.10-4.15).

Conclusions

Cardiopulmonary factors were associated with hospitalization for HF in the 30 days following a COPD exacerbation, while only cardiovascular-related factors and exacerbation severity were associated with AF hospitalization. Understanding factors will help target people for prevention.

Peer Review reports

Exacerbations of Chronic Obstructive Pulmonary Disease (COPD) are associated with an increased risk of cardiovascular disease (CVD) [ 1 ] likely due to linked pathophysiology, hypoxic state, and an amplified systemic inflammatory response [ 2 , 3 ]. Previous studies have demonstrated an increased, immediate period of risk for hospitalized cardiovascular events following a COPD exacerbation compared with non-exacerbating patients, [ 1 , 4 ] with the risk highest within the first month and following a severe (hospitalized) exacerbation [ 1 , 5 , 6 ]. The 30 day risk of arrhythmias and heart failure (HF) following an exacerbation, [ 6 , 7 , 8 ] approach [ 4 , 6 ] or even surpass [ 7 , 9 ] 3-fold, compared to those who did not have an exacerbation.

Globally, the prevalence of HF in COPD is high, [ 10 ] and, of patients hospitalized for exacerbation, 20% have existing, undertreated HF [ 11 ]. Incident HF attributed to exacerbations is thought to come from the increase in pulmonary arterial pressures, low blood oxygen levels [ 12 ] and activation of adrenoceptors of the autonomic nervous system [ 12 , 13 ]. However, shared symptomology of HF and COPD exacerbations makes new HF diagnosis difficult, with HF often missed [ 3 , 12 , 14 ] or occurring in tandem; approximately 8% of people primarily diagnosed with HF also have a secondary diagnosis of exacerbation [ 15 ]. Studies have investigated COPD progression in HF [ 12 ] and conversely, HF progression across COPD phenotypes, [ 12 , 16 ] but few have focused on exacerbating COPD alone [ 15 ] and no studies have examined factors associated with hospitalization with a HF diagnosis following a COPD exacerbation.

Arrhythmias are also common among people with COPD, with prevalence ranging from 5 to 15% globally, [ 10 ] and atrial fibrillation (AF) is the most common arrhythmia [ 17 ]. AF diagnoses at the time of an exacerbation are also common, with estimates around 17% [ 18 ], but due to shared, nonspecific symptoms between AF and COPD, differential diagnosis can be difficult [ 19 ]. During a COPD exacerbation, changes in blood gases from hypoxia and rising pulmonary pressure can lead to electrophysiological and structural changes of the atrium, and together are thought to contribute to exacerbation-related disturbances in rhythm and progression of AF [ 6 , 10 , 19 , 20 , 21 ] The understanding of COPD progression alongside AF progression is unclear [ 19 ]. Few studies have examined factors associated with hospitalization for incident AF after an exacerbation, with the focus on the short-term [ 21 , 22 ]. Several have however investigated factors associated with concurrent AF at time of an exacerbation [ 18 , 23 ].

Therefore, using a primary-care defined COPD cohort from the Clinical Practice Research Datalink (CPRD) Aurum database linked with hospital, mortality, and socioeconomic deprivation data, we explored factors associated with incident hospitalization for non-fatal HF, or AF or atrial flutter, within the 30 days following a COPD exacerbation.

Study design and methods

Data source.

We obtained pseudonymized, routinely-collected electronic healthcare record data from CPRD Aurum, [ 24 ] a primary care database broadly representative by age, sex, deprivation, and regional distribution, [ 25 ] and covering approximately 20% of GP-registered patients in England [ 24 ]. Primary care data from the May 2022 build [ 24 ] were linked to the Office for National Statistics (ONS) for mortality, socioeconomic data from the 2015 Index of Multiple Deprivation (IMD), and secondary care data from NHS England’s Hospital Episode Statistics (HES) Admitted Patient Care (APC) database.

Source population

The source population were people with a COPD diagnosis who had been included in the Exacerbations of COPD and their OutcomeS on CardioVascular diseases (EXACOS-CV) observational open cohort study [ 4 ]. People were eligible for inclusion in that original cohort study if they met the following criteria: 1) aged 40 years or older, 2) had a COPD diagnosis using a validated algorithm (86.5% PPV) [ 26 ] 3) were eligible for linkage with HES, ONS, and IMD data, 4) had a smoking history (i.e., current or ex-smoker), 5) had continuous GP practice registration with acceptable quality data in the year before start of follow up, and 6) had data recorded after 1 st of January 2014.

Study design and population

We conducted two nested-case control studies, in parallel. The study population for each study consisted of COPD patients in the EXACOS-CV source population, who 1) experienced an exacerbation within cohort follow-up, 2) among the pool of eligible controls had at least 30 days of contributing data post-exacerbation, and 3) had no evidence of HF or arrhythmias in the year before exacerbation. People were excluded from the AF/flutter study population if, within the 30 days post-exacerbation, they had evidence of other non-AF arrhythmias (e.g., cardiac arrest) (Fig. 1 for study designs; Supplementary Figures 1 and 2 for HF and AF/flutter eligibility diagram respectively).

Study design for the parallel, nested case control studies. Abbreviations: HF=heart failure, AF/f = atrial fibrillation/flutter, GP=general practice, CV=cardiovascular. Two nested case control studies, for HF and AF/f respectively, were conducted among all patients who experienced an exacerbation at start of cohort follow up. Full definitions of demographic and clinical factors of interest are in the Supplementary materials

Cases were individuals with a hospitalized, cardiovascular event (HF or AF/flutter, respectively) within 1-30 days post COPD exacerbation. Cases were determined in the HES database using ICD-10 codes in the primary diagnostic position across all episodes in a single hospitalization. The date of admission was the date of the case (index date, HF or AF/flutter, respectively). Extended case definitions are in Supplementary Table 3 .

The set of controls per case was drawn among individuals in the study population who had no in-hospital diagnosis of the cardiovascular event-of-interest (HF or AF/flutter, respectively) and who had 30 days of contributing data post-exacerbation. Controls were assigned a pseudo-end date (i.e., 30 days post-exacerbation) on which to match. Controls were individually matched to cases on GP practice to account for unmeasurable potential clinical differences in disease management by clinicians, within a 30-day window of the index date, and could be used as a control for more than one case. For the HF analysis, controls were matched 2:1 and for the AF/flutter analysis, 3:1.

The choice of matching factors and ratios were chosen based on considerations of 1) maximizing the ratio itself for reasons of power and precision while 2) minimizing cases lost without a full set of controls. Only case sets with the full ratio of controls per case were included for analysis.

We examined factors potentially associated with hospitalization for HF or AF/flutter in the 30 days following an exacerbation of COPD. Factors included demographic characteristics: age (categorized into four age bands; 40-69, 70-74, 75-79, ≥80), sex, IMD quintiles, and ethnicity; and smoking status. Comorbidities included (hypertension, anxiety, depression and depressive symptoms, type II diabetes, chronic kidney disease (CKD), BMI [body mass index; using World Health Organization classification]). COPD factors included GOLD grade of airflow limitation (defined as 1 mild, 2 moderate, 3-4 severe/very severe), Medical Research Council (MRC) dyspnea score (1-2; 3; 4-5), exacerbation severity at cohort entry (moderate/severe) prior exacerbation frequency (infrequent (≤1) versus frequent (≥2) history in a year window preceding one year to cohort entry). Prior CVD history was evidence of the following anytime preceding the year before exacerbation date [acute coronary syndrome (ACS), arrhythmias, HF, ischemic stroke, pulmonary hypertension PH], COPD inhaled therapies, and major classes of cardiovascular medications (prescriptions defined two years before cohort entry). Covariate definitions are in Supplementary Table 4 .

We used validated definitions for COPD exacerbations. A moderate exacerbation was defined as a COPD-related primary care (GP) visit with either a code for exacerbation (including Lower Respiratory Tract Infection (LRTI) SNOMED-CT codes) and/or prescription for respiratory antibiotics and oral systemic corticosteroids not on the same day as an annual review, as validated in CPRD [ 27 ]. A severe exacerbation was defined as a hospitalization with an acute respiratory event code including COPD or bronchitis as a primary diagnosis, or a secondary diagnosis of COPD, as validated in HES [ 28 ]. We considered exacerbations to be the same event if recorded within 14 days in which case the highest level of severity was chosen.

We checked covariate missingness to assess use in adjusted models. Imputation was not considered for covariates with missing data, given the missingness mechanism was Missing-Not-At-Random (MNAR), violating the Missing-Completely-At-Random (MCAR) assumption premising imputation [ 29 ].

Codelists for primary care factors were generated using SNOMED-CT and British National Formulary ontologies; we used our standardizable, reproducible methodology, available on GitHub: for drug [ 30 ] and medical/phenotype codelists , respectively. Codelists for hospitalizations used ICD-10 codes. Codelists are available on our EXACOS-CV GitHub repository .

Statistical analysis

We compared separately the odds of hospitalization for HF or AF/flutter between the comparator groups for each factor, using conditional logistic regression. Our final model was adjusted for all covariates without substantial amount of missing data, including demographic factors, comorbidities, and COPD inhaled therapies and cardiovascular medications. In three sensitivity analyses, we repeated main analyses additionally adjusting for variables-of-interest with substantial missing data, respectively: GOLD, MRC, and CKD.

Analyses were performed using STATA v17.

These data were collected and provided by CPRD. Ethical approval was obtained through CPRD’s Research Data Governance Process (protocol number: 22_002377). The RECORD checklist for observational studies is in Supplementary Table 5 .

Characteristics of study participants

The HF dataset consisted of 1,569 cases experiencing an HF event within the first 30 days post-exacerbation, matched to 3,138 controls. The AF/flutter dataset consisted of 841 cases experiencing an AF/flutter event within the first 30 days post-exacerbation, matched to 2,523 controls. Tables 1 and 2 show the characteristics of the participants for HF and AF/flutter, respectively.

Across both study populations, cases tended to have had a severe exacerbation, were more likely to be older, male, an ex-smoker, have comorbidities including prior prevalent cardiovascular disease, and be prescribed cardiovascular medications. Cases and controls both tended to have infrequent exacerbation history, have prescriptions for long-acting therapies, but tended to not have prescriptions for short-acting inhaled therapies.

Factors associated with HF hospitalization 1-30 days post exacerbation

Age, type II diabetes, obesity, prior HF diagnosis, prior arrhythmia diagnosis, having a severe exacerbation, and most cardiovascular medications were associated with increased odds of being hospitalized for HF within 30 days of a COPD exacerbation (Table 1 ). The factors most strongly associated with HF were exacerbation severity (aOR=6.25, 95%CI 5.10-7.66), a prior HF diagnosis (aOR=2.57, 95%CI 1.73-3.83), age at least 80 years (≥80 vs. 40-69; aOR=2.41, 95%CI 1.88-3.09), and, of the cardiovascular medications, diuretics (aOR=2.81, 95%CI 2.29-3.45).

In sensitivity analyses, GOLD grade, MRC score, and history of CKD were all associated with an increased odds of being hospitalized for HF within the month post exacerbation.(Supplementary Table 1 ) The strongest associations were for CKD (aOR=1.85, 95%CI 1.46-2.35) and higher levels of airflow limitation and breathlessness (GOLD grade 3-4 Severe/Very Severe aOR=1.83, 95%CI 1.32-2.54, versus GOLD grade 1 Mild) (Score 4-5 MRC aOR=1.87, 95%CI 1.42-2.46, versus MRC 1-2).

Factors associated with AF/flutter hospitalization 1-30 days post exacerbation

Age, male sex, prior arrhythmia, prior PH, and having a severe exacerbation were associated with AF/flutter in the 30 days following an exacerbation. Most cardiovascular medications were also associated with AF/flutter (Table 2 ). The factors most strongly associated with AF were exacerbation severity (aOR=5.78 95%CI 4.45-7.50), age ≥80 years (aOR=3.15 95%CI 2.26-4.40), prior arrhythmia and PH (aOR=3.55, 95%CI 2.53-4.98; aOR=3.05, 95%CI 1.21-7.68), and of the cardiovascular medications, anticoagulants (aOR=3.81, 95%CI 2.57-5.64), positive inotropes (aOR=2.29, 95%CI 1.41-3.74) and anti-arrhythmic drugs (aOR=2.14, 95%CI 1.10-4.15).

In sensitivity analyses, GOLD grade, MRC score, and CKD had no association with AF/flutter (Supplementary Table 2 ).

In a primary care defined COPD population, this study examined the clinical profiles of people hospitalized for HF and for AF within a month post exacerbation. We observed that the odds of HF and of AF hospitalization were higher for people with severe, hospitalized exacerbations and with cardiovascular-related history. For HF analyses only, the odds of HF were also higher for people with microvascular factors (i.e., type II diabetes; obesity; CKD) and for people with pulmonary factors, namely those with worse GOLD grade of airflow limitation and higher levels of MRC breathlessness scores.

Heart failure

The pathophysiological links between COPD exacerbations and HF are recognized [ 31 , 32 , 33 ]. Upon exacerbation, dynamic lung hyperinflation from airflow limitation alongside heightened inflammation and hypoxia, can lead to increased strain on both the lungs and heart. The increased cardiopulmonary pressure can then lead to impaired contraction or filling of the left ventricle, namely HF with preserved or with reduced ejection fraction, respectively [ 31 , 32 , 33 ].

Few studies have investigated factors associated with HF in COPD alone, [ 15 , 34 , 35 , 36 ] of which only one [ 15 ] investigated hospitalized exacerbation with concurrent HF, but did not quantify this relationship with ORs, and was conducted in the US National Inpatient Sample (NIS) database. The remaining were post-hoc analyses of trials focused on stable COPD [ 34 , 35 , 36 ].

The strong magnitude of the association for exacerbation severity (hospitalization) but not for exacerbation frequency, suggests two points. First, from a healthcare service-level standpoint, patients hospitalized for exacerbations are more likely to be hospitalized for a future HF (i.e., re-admission) compared with patients whose exacerbation was managed in primary care. Second, clinically, exacerbation severity (e.g., greater intensity of inflammation) has a greater indication of a patients’ future cardiac state, rather than past exacerbation occurrence and management. Findings for older age were anticipated and align with previous studies [ 15 , 34 , 35 , 36 ].

The associations for history of HF, arrhythmia, type II diabetes, and CKD with post-exacerbation HF are unsurprising given their known independent relationships each with HF and exacerbations alone. Chronic, unmanaged HF can lead to future health service utilization for HF [ 16 , 37 ]. Arrhythmia-attributed cardiac remodeling can contribute to development of cardiomyopathy [ 38 ]. Diabetes is a risk factor for substantial HF progression [ 16 , 39 ], and separately a population-based study in COPD patients demonstrated an increased risk of cardiovascular mortality with type II diabetes [ 40 ]. Impaired renal hemodynamics and activation of the renin-angiotensin-aldosterone system (RAAS) can lead to HF, [ 41 ] and separately reduced kidney function is associated with future HF [ 42 ].

Our findings for cardiovascular medications indicate a certain treatment profile in primary care, leading up to the post-exacerbation HF hospitalization. The strongest association for diuretics suggests that leading up to future HF, patients perhaps are receiving treatment indicated for uncontrolled edema from existing HF, diabetic cardiomyopathy, or CKD for example.

GOLD and MRC as factors for post-exacerbation HF likewise were expected. Increased breathlessness and reduced lung function are not only symptoms of an imminent exacerbation or HF; equally, these factors can also indicate delayed diagnosis of unstable COPD or HF, [ 16 , 43 ] given their shared symptomology [ 3 , 12 , 14 ]. Reduced lung function can contribute to worsening prognosis and precipitate a future exacerbation or HF [ 16 , 43 ].

Atrial fibrillation

The pathophysiological mechanisms implicating AF post COPD exacerbation are also established [ 19 , 44 ]. At time of exacerbation, drastic increases in lung hyperinflation and impaired intrathoracic pressures can cause increased pulmonary vascular resistance and damage, leading to alterations to atrial electrophysiology [ 19 , 44 ]. Compromised gas exchange in the lungs can induce systemic inflammation and oxidative stress too, and also put strain on pulmonary vasculature, leading to abnormal atrial structure and ion-channel remodeling, [ 19 , 44 ] while certain treatments prescribed upon exacerbation are arrhythmogenic [ 19 , 44 ].

Only four studies have investigated patient profiles for AF development in unstable COPD, all hospital-based [ 18 , 21 , 22 , 23 ], of which two conducted in the US National Inpatient Sample (NIS) database [ 18 , 22 ]. Two examined factors associated with AF diagnosis after exacerbation [ 21 , 22 ] one of which patients had existing AF [ 21 ]. Two failed to quantify with ORs, only comparing baseline characteristics of exacerbating patients by status of concurrent AF [ 18 , 23 ].

Our findings for older age and male gender are not unexpected; studies similarly found these associations in exacerbating [ 18 , 22 ] and in stable COPD [ 45 ]. Unsurprisingly, exacerbation severity associated with future AF, again adding to the existing evidence of stronger associations for hospitalized exacerbation [ 1 , 6 ] and again, likewise to HF, suggests a distinction between healthcare service-level patient pathways, and intensity versus frequency.

The associations we found for history of PH and arrhythmias aligns with what was anticipated clinically. Electrophysiological and structural changes to the atrium over time, from either AF itself [ 20 ] or from chronic atrial stretching and fibrosis attributed to PH, [ 46 ] can lead to future AF. While a study using Euro Heart Survey data showed COPD as a factor for progression of paroxysmal to persistent AF (aOR=1.51, 95%CI 0.95-2.39) [ 20 ], neither of the two studies looking at patient profiles for post-exacerbation AF, looked at chronic, prevalent arrhythmias itself as a factor [ 21 , 22 ]. No studies have looked at PH, although the study among end-stage COPD patients in the NIS database found a weak association for pulmonary circulatory disorders (aOR=1.44, 95%CI 1.37-1.52) [ 22 ], compared the OR of about 3 for PH. A study found raised pulmonary artery pressure to be associated with AF (p<0.05), but failed to quantify, and it was small, underpowered, and not generalizable as it restricted to hospitalized COPD patients with existing AF [ 21 ].

The lack of associations for prior ACS, ischemic stroke, HF, and hypertension somewhat contradict the study among hospitalized, end-stage COPD patients, [ 22 ] where an association was found for HF (aOR=2.42; 95%CI: 2.36-2.48) and coagulopathy (aOR=1.23; 95%CI:1.16-1.31), but again this may reflect the more severe prognosis of these patients versus those in our study.

Likewise to HF, findings for cardiovascular medications indicate a certain treatment profile in primary care, leading up to the post-exacerbation AF hospitalization. Although we were unable to adjudicate by specific subtype of AF,(e.g., paroxysmal, persistent) the strongest associations for positive inotropes, anti-arrhythmic drugs, and anticoagulants may suggest that leading up to future AF, patients perhaps are receiving treatment to manage abnormal heart rate and/or rhythm, and/or to prevent clotting. Future research could investigate the respective treatment profile relative to paroxysmal AF and to persistent AF [ 47 ] to confirm and extend our findings.

Our null results for other comorbidities (i.e., depression and depressive symptoms, anxiety, BMI, CKD, and type-II diabetes) goes against studies finding an association for diabetes, [ 18 , 22 ] mixed findings for depression, [ 18 , 22 ] among other comorbidities. Yet these observed associations could be due to differing context; using the NIS database in a study population of only hospitalized, exacerbating, insured payors. GOLD airflow obstruction and MRC dyspnea score were not associated with post-exacerbation AF hospitalization, possibly as AF is often associated with vague symptoms of onset and not necessarily immediately thought about as a cause of increasing breathlessness in someone with COPD [ 44 , 48 , 49 ].

Methodological considerations

A key strength is our generalizable COPD cohort, defined within the electronic healthcare record with detailed data to examine and adjust for a range of factors. Unlike other studies, this allowed us to look at two patient pathways: cardiovascular-related hospitalizations post primary-care exacerbation, and re-admissions post hospitalized exacerbation. Our exclusion criteria allowed us to quantify the odds of new onset HF and AF hospitalizations following exacerbation, by ensuring no evidence of AF or HF in the year prior to exacerbation. We chose to study two common cardiovascular conditions in COPD, AF and HF. We could not subdivide HF and AF more granularly, because of insufficient statistical power and the inability to obtain electrocardiogram or echocardiogram results to adjudicate.

We used validated codes to define COPD [ 26 ] and COPD exacerbations [ 27 , 28 ] so misclassification is unlikely. Where possible, we used previously tested methods [ 30 ] and codes to define our factors-of-interest and codes were checked by a pulmonologist and/or cardiologist. The nested case control matched design allowed us to control for unmeasurable potential clinical differences in disease management by clinicians, by matching patients on GP practice.

To minimize selection bias among patients with measured factors only, we adjusted only for covariates without substantial missing data. We reserved GOLD, MRC, and CKD for sensitivity analyses; the associations of these factors with HF are generalizable only to patients with measurements (e.g., patients with greater healthcare monitoring, provision, or access). For this reason, the relationship for ethnicity could not be quantified, and given the data sparsity. For the HF analysis, we were unable to quantify B-type natriuretic peptide testing as a factor (BNP or NT-proBNP) because of 90% missing data for BNP (data not shown).

Confounding by indication is possible, particularly for the associations observed for cardiovascular medications (cases could have been more likely prescribed cardiovascular medications to manage a prevalent co-morbidity (perhaps with delayed diagnosis) that posed future cardiovascular risk, compared with controls) [ 50 ]. For example, although 12.8% of HF cases had prevalent HF diagnoses at baseline (201/1569), over 70% of HF cases were prescribed diuretics (1122/1569). Diuretics, particularly extended use of loop diuretics, can indicate possible, pre-HF diagnoses [ 51 ], given HF diagnoses tend to be delayed in COPD patients [ 14 , 37 , 51 ]. Taking this information together, this suggests a substantial proportion of cases could have been prescribed diuretics to manage possible-yet-undiagnosed HF, in which case, the later case-defining hospitalization was the delayed, first-time diagnosis of HF.

Our results for cardiovascular medications do not imply these medications are increasing the cardiovascular risk, rather they add to an understanding of the exacerbating patient profile. Furthermore, although these medications could indicate delayed CVD diagnosis, alternatively they could be medically indicated for management of a co-morbidity we did not adjust for, e.g., beta-blockers can be prescribed for thyroid conditions [ 52 ].

Implications for clinical practice

Within the month-window following an exacerbation, largely exacerbation intensity and cardiovascular-related management and disease history were associated with odds of incident HF and AF. For HF specifically, existing type II diabetes, CKD, lung function (GOLD grade), and levels of breathlessness (MRC) had an association too—but not for AF. These factors can help better identify patients most at-risk for HF and AF, to streamline efforts to allocate screening, vigilant monitoring, and prevention.

At the time of a COPD exacerbation, particularly hospitalized exacerbation, we recommend preemptively monitoring markers of possible HF, through taking medication history of loop diuretics, [ 51 ] and through BNP testing [ 53 ]. At present however, HF prevention is narrow in scope, with guidelines for early identification of HF not explicitly considering unstable COPD [ 53 , 54 ]. Our results suggest that HF monitoring should widen to include patients with COPD exacerbations.

Upon exacerbation, particularly hospitalized exacerbation, we recommend proactively screening for AF (e.g., electrocardiogram) [ 19 ] as AF commonly presents subclinically [ 17 ]. Still, at present, AF screening is narrow in scope; it is primarily conducted in patients with existing or suspected AF with the goal of preventing stroke, with AF guidelines not explicitly considering unstable COPD [ 17 , 55 ]. Our results suggest that AF screening should widen to include patients with COPD exacerbations, to help prevent future AF—even before stroke.

Cardiopulmonary factors were associated with hospitalization for HF in the 30 days following a COPD exacerbation, while only cardiovascular-related factors and exacerbation severity were associated with AF hospitalization. Understanding risk factors will help to target people for prevention. Future studies with the intent of improving risk prediction for HF and AF should consider exacerbations of COPD.

Availability of data and materials

Data are available on request from the CPRD. Their provision requires the purchase of a license, and this license does not permit the authors to make them publicly available to all. This work used data from the CPRD Aurum version collected in May 2022 and have clearly specified the data selected within the Methods section, and linked data in the Supplementary Materials . To allow identical data to be obtained by others, via the purchase of a license, the code lists will be provided upon request. Licenses are available from the CPRD ( http://www.cprd.com ): The Clinical Practice Research Datalink Group, The Medicines and Healthcare products Regulatory Agency, 10 South Colonnade, Canary Wharf, London E14 4PU.

Abbreviations

Chronic Obstructive Pulmonary Disease

Clinical Practice Research Datalink

• Cardiovascular Disease

General practice

Hospital Episode Statistics

Index of Multiple Deprivation

Medical Research Council

• Heart Failure
• Atrial Fibrillation

Chronic Kidney Disease

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Acknowledgements

This study is based in part on data from the Clinical Practice Research Datalink obtained under license from the UK Medicines and Healthcare products Regulatory Agency. The data is provided by patients and collected by the National Health Service (NHS) as part of their care and support. The interpretation and conclusions contained in this study are those of the author/s alone.

This study was funded by AstraZeneca UK. CN, KR, and SM of the funding source took part in initial conceptualization and protocol design and the interpretation of results.

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JQ takes responsibility for the content of the manuscript, including the data and analysis. EG, JQ, CN, KR, and SM conceptualized the study and designed the protocol. JQ, NP and EG contributed to the development of the codelists that defined the study variables. EG, CK contributed to the methodology. EG, HW, CK and AI accessed and verified the data. EG, CK and AI were responsible for data curation and management. EG, CK were responsible for formal analysis. EG wrote the original draft of the manuscript. EG, MA, JQ contributed to the literature review and clinical implications. All authors contributed and approved the final manuscript. All authors had final responsibility for the decision to submit for publication.

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Correspondence to Jennifer K. Quint .

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CPRD has NHS Health Research Authority (HRA) Research Ethics Committee (REC) approval to allow the collection and release of anonymized primary care data for observational research [NHS HRA REC reference number: 05/MRE04/87]. Each year CPRD obtains Section 251 regulatory support through the HRA Confidentiality Advisory Group (CAG), to enable patient identifiers, without accompanying clinical data, to flow from CPRD contributing GP practices in England to NHS Digital, for the purposes of data linkage [CAG reference number: 21/CAG/0008]. The protocol for this research was approved by CPRD’s Research Data Governance (RDG) Process (protocol number: 22_002377 ) and the approved protocol is available upon request. Linked pseudonymized data was provided for this study by CPRD. Data is linked by NHS Digital, the statutory trusted third party for linking data, using identifiable data held only by NHS Digital. Select general practices consent to this process at a practice level with individual patients having the right to opt-out.

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Competing interests

JQ reports grants from GlaxoSmithKline, Health Data Research UK, MRC, Asthma+Lung UK, Bayer, BI, AZ and Chiesi, outside this work and AZ for the conduct of this study. JQ has received personal fees for advisory board participation, consultancy or speaking fees from GlaxoSmithKline, Evidera, AstraZeneca, and Insmed. CN, KR, and SM are employees of AZ and hold stock and/or options in the company. HW reports grants from Health Data Research UK outside the submitted work. EG, CK, AI, and MA have nothing to disclose.

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Graul, E.L., Nordon, C., Rhodes, K. et al. Factors associated with non-fatal heart failure and atrial fibrillation or flutter within the first 30 days post COPD exacerbation: a nested case-control study. BMC Pulm Med 24 , 221 (2024). https://doi.org/10.1186/s12890-024-03035-4

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Received : 22 December 2023

Accepted : 24 April 2024

Published : 04 May 2024

DOI : https://doi.org/10.1186/s12890-024-03035-4

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