cardiac nursing research articles 2021

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Open Access

Peer-reviewed

Research Article

The impact of heart failure on patients and caregivers: A qualitative study

Contributed equally to this work with: Colleen A. McHorney, Sonal G. Mansukhani, Milena Anatchkova, Natalie Taylor, Heidi S. Wirtz, Siddique Abbasi, Lynwood Battle, Nihar R. Desai, Gary Globe

† Deceased.

Roles Conceptualization, Formal analysis, Investigation, Methodology, Supervision, Visualization, Writing – original draft

Affiliation Patient Centered Research, Evidera, Bethesda, MD, United States of America

Roles Formal analysis, Methodology, Project administration, Supervision, Visualization, Writing – original draft

* E-mail: [email protected]

Roles Formal analysis, Methodology, Supervision, Visualization, Writing – original draft

Roles Conceptualization, Funding acquisition, Resources, Writing – review & editing

Affiliation Global Health Economics, Amgen, Thousand Oaks, CA, United States of America

Roles Writing – review & editing

Affiliation Patient Author from Cincinnati, Cincinnati, OH, United States of America

Affiliation Yale School of Medicine, New Haven, CT, United States of America

• Colleen A. McHorney, 
• Sonal G. Mansukhani, 
• Milena Anatchkova, 
• Natalie Taylor, 
• Heidi S. Wirtz, 
• Siddique Abbasi, 
• Lynwood Battle, 
• Nihar R. Desai, 

• Published: March 11, 2021
• https://doi.org/10.1371/journal.pone.0248240
• Reader Comments

Heart failure is rising in prevalence but relatively little is known about the experiences and journey of patients and their caregivers. The goal of this paper is to present the symptom and symptom impact experiences of patients with heart failure and their caregivers.

This was a United States-based study wherein in-person focus groups were conducted. Groups were audio recorded, transcribed and a content-analysis approach was used to analyze the data.

Ninety participants (64 patients and 26 caregivers) were included in the study. Most patients were female (52.0%) with mean age 59.3 ± 8 years; 55.6% were New York Heart Association Class II. The most commonly reported symptoms were shortness of breath (81.3%), fatigue/tiredness (76.6%), swelling of legs and ankles (57.8%), and trouble sleeping (50.0%). Patients reported reductions in social/family interactions (67.2%), dietary changes (64.1%), and difficulty walking and climbing stairs (56.3%) as the most common adverse disease impacts. Mental-health sequelae were noted as depression and sadness (43.8%), fear of dying (32.8%), and anxiety (32.8%). Caregivers (mean age 55.5 ± 11.2 years and 52.0% female) discussed 33 daily heart failure impacts, with the top three being reductions in social/family interactions (50.0%); being stressed, worried, and fearful (46.2%); and having to monitor their “patience” level (42.3%).

Conclusions

There are serious unmet needs in HF for both patients and caregivers. More research is needed to better characterize these needs and the impacts of HF along with the development and evaluation of disease management toolkits that can support patients and their caregivers.

Citation: McHorney CA, Mansukhani SG, Anatchkova M, Taylor N, Wirtz HS, Abbasi S, et al. (2021) The impact of heart failure on patients and caregivers: A qualitative study. PLoS ONE 16(3): e0248240. https://doi.org/10.1371/journal.pone.0248240

Editor: Claudio Passino, Ospedale del Cuore G Pasquinucci Fondazione Toscana Gabriele Monasterio di Massa, ITALY

Received: July 31, 2020; Accepted: February 23, 2021; Published: March 11, 2021

Copyright: © 2021 McHorney et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: All relevant data are within the paper and its Supporting Information files.

Funding: This study was supported by funding from Amgen Inc. awarded to all authors. Amgen Inc. provided support in the form of salaries to GG, HSW, and SA. Evidera provided support in the form of salaries for CAM, MA, SGM, and NT. The specific roles of these authors are articulated in the ‘author contributions’ section. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have read the journal’s policy and the author’s of this manuscript have the following competing interests: GG, HSW, and SA are paid employees of Amgen Inc. CAM, MA, SGM, and NT are paid employees of Evidera. NRD has received research grants unrelated to this work and consultancy support from Amgen, Boehringer Ingelheim, Cytokinetics, Relypsa, Novartis, and SC Pharmaceuticals unrelated to this work. This does not alter our adherence to PLOS ONE policies on sharing data and materials. There are no patents, products in development or marketed products associated with this research to declare.

Introduction

Chronic heart failure (HF) results when the heart cannot pump enough blood to meet the body’s needs [ 1 ]. HF is considered a global epidemic—with an estimated 64 million individuals affected worldwide and likely many more caregivers impacted—which is anticipated to drive healthcare costs up to USD 70 billion by 2030. Annually, HF diagnoses lead to more than one million hospitalizations and approximately 300,000 deaths in the United States (US) [ 2 , 3 ].

Chronic HF is characterized by slow progression of symptoms that include breathlessness with exertion, shortness of breath, fatigue, tiredness or weakness, difficulty breathing when lying down, sleep problems, and swollen legs or ankles. These symptoms—especially shortness of breath and fatigue—diminish the health-related quality of life (HRQoL) of both patients and their caregivers as many patients are unable to function independently in their day-to-day lives [ 4 ]. Depression is also a common psychological sequalae of HF [ 5 – 9 ]. Furthermore, the day-to-day unpredictability of HF (i.e., acute exacerbations and hospitalizations), medical management issues such as pill burden and side effects can cause distress and feelings of hopelessness and helplessness in both HF patients and their caregivers [ 10 ]. While there are successful HF therapies which have demonstrated reductions in mortality and morbidity, very few HF drugs have been indicated for improving HRQoL in HF patients in addition to physical function, or symptoms [ 11 ].

Several studies have documented the impact of HF which results in substantial caregiver burden experienced by loved ones [ 12 – 18 ]. In other words, living with HF is a “shared experience” for both patients and caregivers [ 14 ]. Caregivers have reported experiencing distress, depression, anxiety, social isolation, and health problems related to caring for a patient with HF [ 12 , 14 ]. Research has also demonstrated that, across various cardiovascular diseases, caregiver physical or emotional strain is an independent risk factor for caregiver mortality [ 19 ]. The totality of physical and emotional impacts on the caregiver of HF patients suggests that caregiver burden and well-being are important outcomes to consider for chronic HF management.

HF management is complex and requires daily coordination of and adherence to multiple medications and a set of lifestyle changes related to dietary restrictions, fluid intake, exercise, and weight monitoring. Frequent healthcare appointments—across several different provider types—are often necessary for HF patients. Caregivers play an important role in day-to-day HF management [ 16 , 20 , 21 ], and existing evidence suggests that the HF treatment journey is challenging for patients and caregivers alike [ 10 , 12 , 15 – 17 , 22 , 23 ]. As the US population continues to age, HF management will have an increasing impact on the caregivers of HF patients.

The goal of this research is to explore and present the symptom and symptom-impact experiences of HF patients and their caregivers. Unlike some other chronic diseases (such as hypertension or dyslipidemia), day-to-day symptom impacts in HF are not an experience and journey just of the individual patient. Rather, caregivers experience their own burden, strain, distress, and hardships by the act of caregiving for HF patients.

While past research has characterized the burden of HF on patients and caregivers, it is not without limitations, which motivated the current research. First, some studies were published 11–13 years ago [ 10 , 24 ]. Treatments for HF have advanced across that period, perhaps making these more dated studies less salient and informative in terms of the patient and caregiver journey. Second, some sample sizes have been quite small (fewer than 20 patient and/or caregiver participants [ 13 , 17 , 23 , 24 ]), which can limit their generalizability. Third, other past studies were conducted at single sites within a given country [ 15 , 17 , 22 , 24 ], which also contributes to generalizability issues. Fourth, two studies were literature reviews with articles dating up to 20 years ago [ 14 , 18 ]. Fifth, of the past qualitative studies, all were one-on-one interviews. While one-on-one interviews and focus groups each have inherent limitations, focus groups can often lead to more discerning discoveries because group interactions can yield more meaningful findings than individual interviews [ 25 ]. With these limitations and considerations in mind, we embarked on qualitative discovery research with 64 HF patients and 24 caregivers of HF patients sampled in 2017 and 2018 in three US cities (in different geographical regions) with an aim to cross-validate past studies and contribute new insights.

Study design and sampling

This was an observational, cross-sectional, qualitative, focus group study in the US wherein 19 in-person focus groups were conducted with 64 patients with HF and 26 caregivers. The study independently recruited patients and caregivers. In this article, the term “caregiver” was used to define anyone who cares—unpaid—for a friend or a family member living with HF.

Patients included in the study had to be at least 45 years old at the time of screening and self-reported the following: a diagnosis of HF, at least New York Heart Association (NYHA) class II, and taking at least one HF prescription medication in the last six months. Caregivers were eligible if they were at least 21 years old, a relative of any HF patient (not necessarily participating in the focus groups) with at least NYHA class II status who is not participating in the study, and a self-report of spending at least eight hours a week caring for the HF patient. All participants were recruited using market-research vendors across four US locations: Beverly Hills, CA; Skokie, IL; Boston, MA; and Philadelphia, PA. A standardized recruitment script was used by the vendors to identify potential participants from their proprietary databases. The sample was selected to represent as diverse a participant mix as possible regarding gender, age, socioeconomic status, and ethnicity. Male and female sessions were conducted separately as were patient and caregiver sessions. All procedures and patient-facing materials were approved by Ethical & Independent Review Services institutional review board (IRB), which is an independent ethics committee, before study initiation. All participants were consented verbally and in writing. The identification number for this study is 17191.

The patient and caregiver focus groups were conducted using semi-structured discussion guides. The patient guide was carefully designed to elicit physical and emotional sequelae, self-management, medication adherence, and manifestations of worsening and improvement in overall health status to understand participants’ symptom experience, impacts on day-to-day functioning, and solutions and resources that could facilitate the HF journey. For the caregiver groups, the guide was designed to understand length of experience, roles and responsibilities, extent of educational resources and social support, and facilitators and barriers to caregiving. Both discussion guides were reviewed by two HF patient advocates who participated in the study to provide feedback on the focus group questions. Table 1 gives illustrative questions that were used in the focus group guides. All focus group sessions were audio- and video-recorded (with participants’ permission) and lasted approximately 90 minutes.

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https://doi.org/10.1371/journal.pone.0248240.t001

Following written informed consent, focus groups were conducted by one of the researchers (CAM) who used probing and non-verbal techniques to elicit responses from participants following the semi-structured interview guide.

All participants also completed a self-reported sociodemographic and clinical questionnaire. Recognizing the wealth of literature around HF symptoms and impacts, two small (8.5x11-inch) posters were developed that included the cardinal HF symptoms and impacts ( S1 Appendix ). This was utilized to cue the participants and act as a steppingstone to other discussion topics.

Qualitative data analysis

All audio recordings of the focus group discussions were professionally transcribed. Upon receipt of each transcript, one researcher (NT) performed quality checks. The goal of this step was to correct any transcription errors and remove any personal health information found within the transcripts. A content-analysis approach was used to analyze the focus group discussion data (based on notes, transcripts, and audio recordings). All analyses were performed using an analysis software program (ATLAS.ti version 7.5.2). A coding dictionary was developed prior to qualitatively analyzing the transcripts to capture the symptoms and impacts elicited in the sessions. The coding dictionary was revised in vivo to include codes for new concepts. Once all transcript coding was complete, all codes were thoroughly reviewed by a second team member to ensure it was performed in an accurate and consistent manner. The qualitative output included the text captured by the coding process for each code and the participant quotes organized by HF symptoms and impacts from the perspective of patients and caregivers interviewed.

Quantitative data analysis

A DataFax database for all quantitative data was developed, tested, and validated prior to data entry. DataFax is a 21 Code of Federal Regulations (CFR) Part 11-compliant, direct fax-to-computer data management system that relies on optical character recognition (OCR) software for collecting study data from case report forms. The quantitative data entered by the OCR software was reviewed by two independent reviewers to ensure accuracy. Descriptive statistics (number, mean, standard deviation [SD], and frequency) were presented for the sociodemographic and clinical form items.

A total of 64 patients who met the eligibility criteria participated in the one-time, focus-group discussion. Focus-group discussions were conducted between April and September 2018.

Table 2 provides the demographic characteristics for the 63 patient participants. One participant did not satisfy the terminal status of the 64 participants. The sample consisted primarily of older adults (59.3±8 years; range = 45–78 years) who were non-Hispanic (n = 58; 92.1%), White (n = 36; 57.1%), and female (n = 33; 52.4%). Over 41.0% (n = 26) of the sample was African American. About half the participants were married or living with a significant other (n = 31; 49.2%). The sample was fairly well educated with 39 (61.9%) reporting some college or university education or higher. Just over one half of the patient sample was employed full time (n = 24; 38.1%) or part time (n = 9; 14.3%) while 17 (27.0%) were retired and 10 (15.9%) were disabled.

https://doi.org/10.1371/journal.pone.0248240.t002

Table 3 provides the clinical characteristics for the enrolled patients. Most patients were NYHA class II (n = 35; 55.6%) or III (n = 19; 30.2%). The mean duration since HF diagnosis was 8.9±8.5 years (range: 0.5 to 56.0 years). The most common self-reported comorbid conditions were hypertension (n = 34; 54.0%), arthritis (n = 28; 44.4%), myocardial infarction/heart attack (n = 14; 22.2%), anxiety (n = 12; 19.0%), depression (n = 10; 15.9%), and diabetes (n = 10; 15.9%).

https://doi.org/10.1371/journal.pone.0248240.t003

Table 4 provides a summary of the spontaneous and probed HF symptoms. All of the cardinal HF symptoms noted in past research were identified in this qualitative work. The most commonly-reported symptoms (reported by at least 20.0% of the patient sample) were shortness of breath (n = 52; 81.2%), fatigue/tiredness (n = 49; 76.6%), swelling of legs and ankles (n = 37; 57.8%), and trouble sleeping (n = 32; 50.0%).

[Participant name 1 , FG#1]: “the concomitant shortness of breath , that’s the #1 thing . It really plays havoc with a whole lot of other things . So the second one is the speed at which I get fatigued . And the length of time it takes to recover from being fatigued . And that is physical fatigue that–like [participant name 3] mentioned , it also really wipes out your ability to , like , stay focused , or even care to focus . ”

https://doi.org/10.1371/journal.pone.0248240.t004

Table 5 provides a summary of the spontaneous and probed HF impacts from the patient perspective. A total of 47 day-to-day HF impacts were elicited from the patients. The top-three impacts were changes/reductions in social/family interactions (n = 43; 67.2%), dietary changes and restrictions (n = 41; 64.1%), and difficulty walking and climbing stairs (n = 36; 56.3%). Several mental-health sequelae were noted as day-to-day impacts including depression and sadness (n = 28; 43.8%), fear of dying (n = 21; 32.8%), anxiety (n = 21, 32.8%), and difficulty concentrating (n = 10; 15.7%). Other common physical impacts were: less exercise or low endurance for exercise (n = 31, 48.4%), being able to engage in recreational activities and hobbies (n = 28; 43.8%), difficulty performing work or job responsibilities (n = 17; 26.6%) or household chores (n = 15; 24.4%), difficulty lifting or carrying items (n = 13; 20.3%), needing frequent rests (n = 13; 20.3%), and frequent urination (n = 12; 18.8%). Eleven patients (17.2%) expressed that they disliked taking their medications predominantly due to side effects such as frequent urination.

[participant name 1 , FG#1]: “Life’s a chore a lot of the time . To go to the store is a chore . To go to dinner with friends is a chore . A lot of times , to be able to go out and fiddle around in my garden is a chore . To do the things that used to be able to give me joy are now chores . ” [participant name 2 , FG#4]: “Well , I sure would like to exercise . I’m a big sports fan , but there’s just no way I can do what I used to do , I mean not even close . You know , that’s--that’s--that’s just very disheartening . I wouldn’t say depressing , but certainly it’s disheartening to see a lot of things I used to do and could do that , um , that I won’t even attempt to now . Because I know what the outcome will probably be . Um , socializing with friends and family , I kind of withdraw , because I know that when they’re ready to do certain things , I’m going to be no , I can’t really , you know , even come close to participating fully . So , uh , I take—I’d just rather not even get started , you know , and that’s kind of what I’m doing . Um , that’s , you know , pretty tough . Um , certain jobs I might want to do that I’m , uh , limited , that I know I won’t be able to do , you know . Um , and then , you know , my--the focus . Uh , a lot of times , um , you know , certain things I have to take care of , I need to--to keep really stay focused for a long time , really concentration level . Then , um , you know , once I feel those pains coming on , you know , that--that takes over everything , you know . That shoots right to the top of the list , and make sure I can get back to feeling normal . ” [004–107]: “Depression . Yeah , depression , that sets in real fast , because you can’t--you just feel that you’re worthless , that , you know , because of things . And you depend on people to do things for you , and I don’t like people doing things for me . It bugs me . But it’s just--it’s just depression . And everybody tries . Oh , the whole family tries to be nice and everything , and I wish they’d just go about being the way they were . You know , but it’s just that they just feel that you’re frail and you’re fragile and all , and it’s just , like they’ve been saying , people--people don’t understand . They--they just can’t comprehend it . ” [002–115]: “Um , just discomfort right after taking my medications . I don’t know what that’s all about , and it usually lasts for about 30 minutes . ”

https://doi.org/10.1371/journal.pone.0248240.t005

Table 6 provides the demographic characteristics of 25 caregiver participants. A total of 26 caregivers were interviewed, but one participant did not fill out the sociodemographic form. Caregivers ranged in age from 33 to 71 years, with most identifying as non-Hispanic (n = 23, 92.0%), White (n = 19, 76.0%), and female (n = 13, 52.0%). The type of relationship to the HF patient included spouse/partner, child, sibling, or other relative; more than half (56.0%) of the caregivers lived with the HF patient. Caregivers were well educated with almost all (96.0%) reporting some college or higher.

https://doi.org/10.1371/journal.pone.0248240.t006

Table 7 provides a summary of the spontaneous and probed HF impacts and consequences from the caregiver perspective. A total of 33 day-to-day HF impacts were elicited from caregivers. The top impacts (greater than 20% endorsement) were changes/reductions in social/family interactions (n = 13; 50.0%); being stressed, worried, and fearful (n = 12; 46.2%) and having to monitor their “patience” level (n = 11; 42.3%). Eleven caregivers (42.3%) mentioned that they used vacation time for caregiving, made less money if they called off work, transitioned to part-time work, or retired early to meet the responsibilities of caring for their patient. Caregivers often expressed that they had difficulty performing work or job responsibilities or regular daily activities (n = 11; 42.3% negative/suboptimal changes in recreational activities and hobbies (n = 10; 38.5%); being frustrated (n = 9; 34.6%); physical consequences of being tired or exhausted (n = 8; 30.8%); sacrificing sleep, having insomnia, or trouble sleeping (n = 8; 30.8%); depression (n = 7; 26.9%); and feeling one is being taken for granted or feeling unappreciated (n = 6; 24.0%). Two caregivers (7.7%) expressed that their caregivee’s had “slowed down” because of HF, often needing frequent rests and not being as agile as they used to be with respect to their physical abilities. Three caregivers (18.8%) expressed that their patient often fell off the furniture because of weakness they experience.

[003–202]: “Because he used to walk around the house with no issues . Now he is a little bit slow and he is feeling vulnerable in case he is at home at the house by himself , and he may have a fall and , uh , things like that . ”

https://doi.org/10.1371/journal.pone.0248240.t007

Below are some illustrative quotes that reflect caregiver impacts.

[003–04 –participant name 1] Um , I become more busy . It’s like having a child , pretty much . I have to look at him all the time , look after him all the time . So especially at night when he is at sleep , because he can’t go to the bathroom , so I have to check on him in the middle of the night to make sure that has been taken care of . [003–04 –participant name 4] The physical challenge is definitely , you know , because my parents live 110 miles away from me . So , you know , I get five calls a day about stuff that’s–in the scope of things , is pretty insignificant , but for them it’s like major , so I’ve had to literally–and I work in sales . I have to drop my career to tend to them , you know , on a moment’s notice . That’s really frustrating . …It’s a challenge because , you know , I have a family myself…– it’s almost like putting your finger in a dam , you know , just try to cover as many holes as you can and hope it doesn’t flood . [002–211] Tired , crabby , aggravated , giving up your social life on weekends . [002–207] Everywhere I turn it’s like another problem . [002–208] He doesn’t like me having ‘me’ time . I like to read . I’ll pull out a book , and he’s irritated . Why are you not talking to me? Why do you want to always read? Well , because you’re boring . [002–208] So it’s like my freedom is—is gone . So I’m always washing his clothes [due to urination accidents] , which is a pain . Um , I—I retired and I was hoping to do some traveling . So I guess I’m sad because I thought my retirement would be different , um , so as a result , I’m not having time for myself to do my walking , bicycle riding . In the summer I like to go bicycle riding, and then he gets sad because I’m leaving him and I’m going on my bike . I have little time for myself and my interests , I’m becoming more like a boring person , myself , um , um , and I used to be really , uh , outgoing and , um , kind of free spirit . Well , that’s not so much anymore , so I think my personality has changed . 002-207e: Well , the—the problem would be I’d have to leave the house , and then he’d want to know why aren’t you here with me , where are you going? 002–201: It’s very discouraging . Um , I’m always on edge . It’s hard to sleep . You’re always wondering , you know , if something’s going to happen . You know , you’re--it’s just , um , very , very , um , mentally and physically draining . 002–204: I’m a pretty positive person . I’m always laughing and smiling . It’s always an act . It’s always an act , because if I show people that I’m sad and depressed , it’s not going to help me . And it’s not going to help my husband . 002–206: I can’t make any plans , can’t plan ahead . Um , can’t leave him unattended , can’t leave him alone . That’s a given . Um , and even when I do , it’s [laughter] why aren’t you answering your phone , um , you know . You know , it’s--I put exhausting . It’s overwhelming…no time for myself . 002–203: The constant worrying , because almost every time he goes to the doctor it’s a new problem or something getting worse . Um , feeling tired constantly , um , loss of friends and no time for myself , and kind of a thankless job . 002–201: Well , taken for granted . God , you know , you’re here but nobody really appreciates it , because they--and then , of course , you know , they take out their anger and frustration on you . Um , so it’s very stressful , can’t make plans . 004–205: It’s the time . I cannot leave the house for any length of time without getting 100 phones calls . Um , the financial cost of having someone come in so that I can get a few hours , that costs . Um , he also has -- my father also has constant fears . And the complaints , he just--it--it causes a tremendous amount of stress , which translates into my job , and then I have to call out . It’s a lot . 004–207: I’m an anxious mess . Um , I’ve lost weight . I don’t sleep well anymore . Um , definitely get bouts of depression , and , um , anxiety

Living with and managing HF is a “shared experience” [ 14 ] and is demanding and arduous “work” [ 16 , 24 ] for patients and their caregivers. The HF journey adversely impacts patient and caregiver physical, mental, and social well-being and can bring about fear, uncertainty, depression, anxiety, and isolation. Understanding and addressing the totality of these experiences is a first step to improving patients’ and caregivers’ symptom ramifications.

This qualitative study confirmed previous research about the cardinal HF symptoms from the patient perspective and their daily impacts on patients with HF. These HF cardinal symptoms (from the patient perspective) were shortness of breath, tiredness and fatigue, edema, and difficulty sleeping [ 4 , 26 – 37 ]. Because the physical symptoms of HF can be so debilitating and incapacitating, several patient-preference studies have shown that HF patients value symptom stabilization or improvement (especially with respect to dyspnea, fatigue, and physical functioning) over outcomes such as hospitalization and increased risk of mortality [ 8 , 9 , 38 – 40 ]. In a qualitative, focus group study, Kraai and colleagues [ 41 ] reported that decreased symptoms, physical functioning, prevention of hospital readmissions, and living a normal life were the HF treatment goals most important to patients; none of the participants mentioned improved survival as a treatment goal. This research also corroborated the mental-health sequelae associated with HF reported by others including depression [ 5 , 7 , 29 , 32 , 34 , 42 , 43 ] and anxiety [ 29 , 33 , 34 ]. Patients often struggle with their new identity as a person with HF as well as its barriers on daily and normal activities that were once done without forethought and planning.

The findings of the current qualitative study further support the results of other studies demonstrating that the frequency and severity of HF-related symptoms (i.e., shortness of breath, fatigue, edema, etc.) impact physical, emotional and social functioning and well-being and results in significantly impaired HRQoL [ 4 , 28 , 44 , 45 ]. This qualitative research with 64 patients and 26 caregivers provides contemporary information on these impacts based on the perspective of the patients themselves and helps to provide a more real-life interpretation of these impacts of symptoms on functioning and well-being.

This qualitative research poignantly described the lived experiences of being a caregiver of patients with HF. Caregivers play a key and meaningful role in their caregivee’s HF self-care and HF health outcomes [ 20 ]. However, most of the caregivers interviewed in this study often felt they were on their own, left to their own devices, and lacked support and training for their new roles. Many of the caregivers interviewed in this study had to make significant changes to their daily life and routine including early retirement or reduced employment hours. Many also reported a significant amount of stress, and often social and emotional isolation, associated with caregiving for a patient with HF. Caregivers often had to assume additional daily roles and responsibilities due to their caregivee’s functional and psychosocial limitations. Many caregivers experienced caregiver “overload” and experienced their own recurring problems with fragile emotional and physical health, excessive stress, and problems with sleep. Intermittent periods of resentment and feeling unappreciated/taken for granted (e.g., being a forced volunteer [ 13 ] and an unsung hero [ 17 ]) were common among the caregivers studied herein.

This study provides evidence of patient and caregiver unmet needs in HF which are poorly understood by clinicians and vastly underserved by the healthcare system. These unmet needs require interventions that not only meet the diverse cultural needs of patients and their caregivers but also incorporates individual preferences for optimizing health outcomes that mean the most to patients and caregivers.

Limitations

This qualitative study has several limitations. First, the mean duration of living with HF was 8.9 years. By the virtue of surviving this time, these patients may have generally had the opportunity to find a new equilibrium with their disease and its impact on their caregivers. Thus, these findings may not be extended to patients living with HF for fewer years. Next, small sample sizes—which can limit generalizability and external validity—are often a characteristic of qualitative research as was the case in this study. However, our sample of 64 patients and 26 caregivers was considerably larger than that of past research. The sample of interviewed patients and caregivers was fairly well educated, relatively young, underrepresented participants from Hispanic origin and resided in metropolitan cities It is unknown whether the burden and impacts reported herein would have been exacerbated or attenuated among more vulnerable HF patients and their caregivers. The key phenotypes of heart failure (i.e., HF with preserved vs. reduced ejection fraction) were not distinguished in sampling. Our sample of patients and caregivers were not paired or matched as was the case with past research. No qualitative subgroup analyses were conducted (e.g., by gender or age). Finally, 56.0% of the patients self-reported NYHA class II, 30.0% self-reported class III, and 13.0% self-reported class IV. It is unknown if the symptoms and impacts revealed herein would have been intensified if more symptomatic patients and their caregivers were sampled.

In conclusion, living with HF is a shared—and often demanding—journey between patients and their caregivers. Patients experience many distressing and burdensome HF symptoms and feel they have a detrimental and deleterious impact on their daily functioning and well-being. Many caregivers are overloaded and stressed and suffer from harmful, negative impacts on their physical and emotional health. The direct costs of HF only take into consideration objective metrics such as healthcare utilization and expenditures. Even measures of indirect costs, while slightly more patient- and caregiver-centered, do not account for or incorporate the distressing and disruptive deficits in functioning and well-being that patients and caregivers experience. As shown by this and other research, the magnitude of patient and caregiver unmet need is palpable. More systematic research is needed to better characterize and understand unmet need at the patient, caregiver, and societal level. We advocate for making HF a much higher priority—perhaps akin to the oncology patient-centered medical homes—with quality metrics and policy changes that can help ameliorate the daily suffering and broad societal impact that is currently vastly underestimated and undertreated.

Supporting information

S1 appendix..

https://doi.org/10.1371/journal.pone.0248240.s001

• 1. National Center for Biotechnology Information (NCBI), US National Library of Medicine. Heart Failure 2014 [cited 2017 July 26]. Available from: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0063056/ .
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• Open access
• Published: 10 April 2024

The mediating role of cardiac patients’ perception of nursing care on the relationship between kinesiophobia, anxiety and depression in rural hospitals: a cross-sectional study

• Mohamed Hussein Ramadan Atta 1 ,
• Shimmaa Mohamed Elsayed 2 ,
• Sharaf Omar Al Shurafi 3 &
• Rasha Salah Eweida 1 , 4  

BMC Nursing volume  23 , Article number:  238 ( 2024 ) Cite this article

156 Accesses

Metrics details

Kinesiophobia could act as a significant barrier against physical activity following cardiac procedures worsening cardiovascular health problems and potentially leading to conditions like hospital-acquired anxiety and depression among patients with cardiovascular disease (CVD). Nurses are the vanguard health care team who can aid patients in taking proactive steps to overcome fear of movement following cardiac procedures.

The overarching aim is to investigate the relationship between kinesiophobia, anxiety and depression, and patients’ perception of nursing care.

A descriptive correlational research design in two rural hospitals, conducted at cardiac intensive care units of Kafr Eldawar Hospital and Damanhur Medical National Institute. Data were collected from 265 nurses, using the following patient-reported outcome measures, the Tampa Scale for Kinesiophobia (TSK), the Hospital Anxiety and Depression Scale (HADS), the Person-Centered Critical Care Nursing Questionnaire (PCCNP) and the patients’ demographic and clinical profile.

A significant negative correlation was found between HADS and PCCNP (r: -0.510, p  < 0.001) however, Kinesiophobia was significantly and positively correlated (r: 0.271, p  < 0.001). A direct effect of PCCNP in the presence of the mediator was found to be not statistically significant (-0.015, CR = 0.302, p  = 0.763). Nonetheless, PCCNP indirectly affects kinesiophobia through HADS ( p =-0.099).

Implication for nursing practice

Customizing individualized cardiac rehabilitation (CR) programs based on the emotional experience of cardiac patients will be conducive to rehabilitation and prognosis for patients, thereby lessening the physical burden and improving their quality of life.

Peer Review reports

According to World Heart Federation statistics, 20.5 million people died from cardiovascular disorders (CVD) in 2021, while over 500 million individuals globally still struggle with these conditions as of 2023 [ 1 , 2 ]. More specifically, 6 out of 21 nations in the Middle East and North Africa had higher than average death rates from cardiovascular disease. Egypt is among the Middle Eastern countries with a high incidence of cardiovascular mortality, in which 600.0 women and 491.6 men per 100,000 inhabitants died from CVD. According to the World Health Organization (WHO), the increased incidence of risk factors like obesity, hypertension, and diabetes is among the most prevalent determinants associated with the prevalence of heart-related illnesses in Egypt [ 2 , 3 ].

The most recent guidelines from the European Society of Cardiology recommend the significance of exercise and physical activity (PA) in enhancing lifestyle and preventing cardiovascular disease (CVD) [ 4 ]. Nonetheless, the WHO projects that between 60% and 85% of the global population have sedentary lives, and inadequate physical activity accounts for over 3.5% of annual fatalities [ 5 , 6 ]. Emerging evidence suggests that kinesiophobia, or fear of movement, could act as a significant barrier against physical activity following cardiac procedures. kinesiophobia may potentially hinder rehabilitation efforts and affect the willingness of post-CVD patients to engage in physical activity. Cardiac pain could lead to various negative psychological ramifications, such as increased restrictive behaviors [ 7 ]. Kinesiophobia is defined as “an extreme, illogical, and crippling fear of physical exercise and movement caused by a perception of vulnerability to painful injury” [ 8 ]. Bäck et al. noted that a significant proportion of cardiac patients experience high levels of kinesiophobia, with approximately 20% reporting this fear [ 9 ]. However, Nair et al. found that 86.7% of patients undergoing cardiac surgery procedures experienced preoperative kinesiophobia [ 10 ].

There is a devoid of information related to the causes of kinesiophobia or fear of movement in patients with CVD. It is most probably related to the experienced physical manifestations including shortness of breath, chest pain, or an increased chance of another cardiac episode [ 7 , 11 ]. Unfortunately, avoiding physical activity can feed a vicious cycle of aggravating cardiac disease and raise the risk of cardiovascular complications by causing deconditioning, decreased cardiovascular fitness, and thereby undermining their overall quality of life [ 12 , 13 , 14 ].

Equally important, kinesiophobia can be exacerbated by co-occurring mental health problems such as sadness, anxiety and depression [ 15 , 16 , 17 , 18 ]. In more recent studies, mental health issues are quite prevalent in cardiac patients; estimated up to one-third of people with CVD are suffering from anxiety and depression [ 15 , 19 ]. Bahall et al., reported that comorbid depression and anxiety have significant negative effects on patient’s health, which further discourages patients from engaging in physical activities. Paradoxically, management and rehabilitation of CVD depend heavily on regular exercise and physical activity. In this sense, we believe that addressing cardiac patients’ perception of nursing care would help to overcome feelings of kinesiophobia and other hospital acquired anxiety and depression [ 16 ].

Cardiac patients’ perception of nursing care can impact how open they are in receiving medical advice, and how they interact with healthcare providers including nurses [ 20 ]. Nurses are the vanguard health care team who ought to take a patient-centered approach and attend to both psychological and physical requirements [ 21 ]. They also play a crucial role in providing psychological care tailored to cardiac patients to manage pain, engage in physical activity, and prevent complications that may arise from inactivity [ 22 , 23 ]. Nurses can help patients take more proactive steps to boost their stress tolerance and adaptive coping with illness. In this regard, if the patient positively appraises the nursing care accorded to him, he/ she would be able to curb feelings of fears and limits related to kinesiophobia as well as the associated feelings of emotional discomfort [ 7 , 22 , 24 , 25 ].

Patients who suffer from depression and kinesiophobia frequently find it difficult to control their conditions. Indeed, improving clinical outcomes of cardiac patients can be greatly aided by the nursing care [ 22 , 23 , 26 , 27 ] Nurses may lessen the obstacles caused by kinesiophobia and comorbid illnesses by giving patients compassionate, patient-centered care that makes patients feel heard, supported and understood. Besides, adopting competent nursing care to these situations can enable patients to actively participate in their care more, improving their quality of life and thereby their clinical outcomes [ 24 , 25 , 26 ].

Based on the findings from studies such as Wang et al. (2023) [ 31 ], three types of kinesiophobia were identified in patients with coronary heart disease: low fear, intermediate fear, and high fear. Keessen et al. (2022) [ 28 ] found that moderate and severe levels of kinesiophobia were associated with cardiac anxiety. Additionally, Yükselmiş Ö [ 29 ]observed that individuals with increased kinesiophobia experienced more anxiety/fear of falling and higher levels of depression. Ratnoo et al. (2023) [ 30 ] reported that patients following Coronary Artery Bypass Grafting exhibited moderate levels of anxiety and depression, along with a high level of kinesiophobia.

Regarding nursing care practice and kinesiophobia, Wang et al. (2023) [ 31 ], delineated the perceptions and practices of cardiac surgery nurses regarding kinesiophobia management. The study highlighted a scenario characterized by a high level of recognition but limited engagement among nurses, coupled with deficits in knowledge retention and a lack of willingness to address kinesiophobia. The authors underscored the necessity of advancing kinesiophobia management through the implementation of key strategies, including the adoption of an effective health education model, fostering stable collaboration between medical staff and family caregivers, streamlining clinical protocols, establishing specialized nursing teams, and delineating clear lines of multidisciplinary responsibilities. In addition, Bastani, et al. in 2022 [ 32 ], focused on examining how the quality of nursing care relates to anxiety and depression in patients with CVD. The findings from this research affirm the significant impact of care quality on anxiety and depression levels among patients with CVD.

To our knowledge, this is the first study examining the correlation between kinesiophobia, emotional state, and perception of nursing care among cardiac patients at both national and international levels. Therefore, this study provides fertile ground for mapping the factors correlated with kinesiophobia and how kinesiophobia impacts mental and physical health outcomes in patients with CVD. This would ultimately aid in adequate support for these patients as well as improving their functional capacity. Moreover, our work addresses a significant gap by calling for prioritizing this pressing issue on the nurses’ agenda, as they typically engage in direct patient’ care. Consequently, it can offer valuable insights into the clinical application perspective for the proper management of kinesiophobia. This study will consider perception of nursing care as a feasible mediator in the relationship between kinesiophobia, and anxiety and depression among cardiac patients in rural hospitals. Given the foregoing literature, we hypothesize that:

Hypothesis 1

Perception of nursing care is negatively correlated with kinesiophobia.

Hypothesis 2

Kinesiophobia is positively correlated with anxiety and depression.

Hypothesis 3

Perception of nursing care plays a mediating role between kinesiophobia, anxiety and depression.

Aim of the study

The overarching aim is to investigate the relationship between kinesiophobia, anxiety, and depression and patients’ perceptions of nursing care among patients with cardiovascular disease. Further objectives are to predict factors that affect feelings of anxiety, depression, and kinesiophobia and to analyze the mediation role of patients’ perceptions of nursing care on the associations between kinesiophobia, anxiety, and depression.

Methodology and materials

A descriptive correlational research design was adopted.

The research was conducted at the cardiac care units of two rural hospitals, namely Damanhur Hospital and Kafr Eldawar. Each hospital’s cardiac intensive care unit (ICU) has a total capacity of 50 beds.

The study protocol received approval from the Research Ethics Committee of the Faculty of Nursing, Damanhur University ( RES: 65-b ). Before their involvement in the study, all participants provided informed consent or appropriate representative (relative), with full knowledge that their participation was voluntary and they had the right to withdraw without facing any consequences. Throughout the study, strict measures were taken to ensure the confidentiality of the participants.

Participants & sampling

The study employed systematic randomized techniques to select participants in the total number of cardiac patients. This data collection followed rigorous guidelines to ensure the validity and reliability of the study’s results.

The sample size was calculated using the G*Power Windows 3.1.9.7 program, with a power of 0.95, an effect size of 0.15, an alpha error probability of 0.05, and several predictors = 2. Using Based on the calculation, this study required an a priori sample size of 215 patients randomly, the researcher decided to recruit 270 patients after considering a 20% loss ratio of follow-up. The statistician tried to match the eligible criteria, to be eligible, participants were diagnosed as cardiac ill patients, did not have any musculoskeletal problems (e.g.; handicapped, osteoporosis) and were less than 60 years old to control for the covariates of osteoarthritis and depression-related medical conditions as a confounding factor [ 33 ].

To ensure that all eligible patients were properly represented in the study sample, the systematic randomization sampling technique was used through the steps mentioned. Initially, the list of patient’s names who were admitted was considered. Then, systematic randomization sampling was conducted based on the systematic rule of using a fixed interval. In the selection process, the researchers include the last patient from every 3 patients (i.e., 3, 6, 9, etc.). The total sample size consisted of 270 patients, including cardiac patients. Five of those patients refused to participate in the study. The final sample size was divided into an equal sample size (265) that was selected from Kafr Eldawar Hospital and Damanhur Medical National Institute (Fig.  1 ). Each randomly selected patient was screened to identify those who met the predetermined inclusion criteria. Steps were repeated until the number of decided-upon subjects was reached. Each recruited subject was interviewed individually to establish rapport and apply tool I, followed by II, III, and IV.

Each patient was interviewed individually to establish rapport and collect data related to the measured outcomes. The researchers provide patients with clear, structured, and standardized tools that are relevant to the topic being assessed to mitigate any potential biases and ensure objectivity throughout the data collection. Data collection was conducted over two months between the beginning of July 2023 and the end of August 2023.

Measured outcomes

This study employed four different instruments to gather data:

Tool I: a structured form related to the social and clinical profile of patients was divided into two parts: Part 1: collected socio-demographic data, such as the patient’s gender, age, place of residence, and marital status. Part 2: collected clinical data, including diagnosis period, history of illness.

Tool II: The Tampa Scale for Kinesiophobia (TSK)

The TSK questionnaire, which was developed in 1991 by Miller R., and Kori S [ 34 ], is a tool used to measure fear of movement. It aims to assess a patient’s excessive, irrational, and debilitating fear of physical activity, which stems from a perceived vulnerability to painful injury. The questionnaire consists of 17 items, and respondents rate their agreement on a 4-point Likert scale ranging from “Strongly Disagree” to “Strongly Agree.” Total scores on the TSK range from 17 to 68, with lower scores indicating minimal or no fear of movement and higher scores indicating a greater degree of kinesiophobia. The TSK has been found to have strong internal consistency across all items [ 35 ]. The reliability of the Finnish version of the TSK, as measured by test-retest reliability, was found to be 0.887 [ 36 ]. In the current study, the Arabic translation of the TSK demonstrated good internal consistency, as indicated by Cronbach’s α value of 0.88.

Tool III: Hospital Anxiety and Depression Scale (HADS)

The Hospital Anxiety and Depression Scale (HADS) is a questionnaire consisting of 14 items, with seven questions dedicated to measuring anxiety and seven questions for measuring depression. Each question is scored on a scale from zero (indicating no impairment) to three (indicating severe impairment), resulting in a maximum score of 21 for both anxiety and depression [ 37 ]. The HADS has been widely used to assess anxiety and depression in cardiac patients, and a study by Amin et al. (2022) [ 38 ] reported a Cronbach’s alpha value of 0.70, indicating good internal consistency. To aid in the interpretation of scores, a classification scheme can be applied: scores ranging from 0 to 7 suggest the absence of clinical symptoms, scores between 8 and 10 indicate moderate levels of depression or anxiety, and scores from 11 to 21 indicate the presence of clinically significant depression or anxiety. The authors of the study also translated the HADS into Arabic and found it to have good internal consistency, as indicated by a Cronbach’s alpha value of 0.87.

Tool IV: Patient version of Person-centered Critical Care Nursing Questionnaire (PCCNPq)

The PCCNPq (Person-Centered Critical Care Nursing Perception Questionnaire) is a 20-item questionnaire developed by Hong and Kang (2020) to assess person-centered critical care nursing from the perspective of patients [ 39 ]. The questionnaire consists of five factors: compassion, expertise, communication, comfort, and respect. Each item is rated on a 4-point Likert-type scale, with response options ranging from 1 (strongly disagree) to 4 (strongly agree). Higher scores indicate a greater perception of individualized care. Concerning reliability, the questionnaire had acceptable internal consistency as Cronbach’s α of 0.89 to 0.91 [ 39 ] and had 0.91, in the present study.

Statistical analysis

Data were fed to the computer and analyzed using IBM SPSS software package version 23.0. A one-way ANOVA test was used to compare more than two categories. Student t-test was used to compare two categories for normally distributed quantitative variables. Pearson coefficient was used to correlate between normally distributed quantitative variables. Linear regression was assessed to detect factors that affect HADS and Kinesiophobia. Path analysis was assessed using AMOS 23. 0 software to detect the Direct and Indirect Effect of Person-Centered Critical Care Nursing on Kinesiophobia mediating by (HADS). s ignificance of the obtained results was judged at the 5% level.

Concerning participant characteristics, 68.3% were female and 80 patients aged between 40 and 50 years old accounted for the largest proportion (30.2%) in Table  1 . Regarding the level of education, illiterate was the largest proportion in the education level ( n  = 114,43%). More than half (52.5%) of the studied patients had working categorical was craft. Participants had congestive heart failure and rheumatic heart disease (23.0%, and 26.0% respectively), less than half of them (46.4%) experienced cardiac disease from 5 to 10 years, and 88.3% of them reported no other disease history. A statistical significance relation was found between all demographic characteristics and the HAD score. Moreover, age, gender, level of education, family history, diagnosis, and onset of disease were significantly correlated with the total score of the PCCNP questionnaire. Also, a statistical correlation was found between the Tampa Scale for Kinesiophobia, and demographic data including age ( p  = 0.024), sex (0.034), diagnosis (0.054), and level of education (0.047) (see Table  1 ) .

Two models were generated to explore the relationship between the studied variables. Model 1 denotes the effect of PCCNP q on HADS. Model 2 represents the effect of PCCNPq on the TSK. Being female (B=-9.149, Beta= -0.412, t=-6.993, p  < 0.001), and having enough income (B=-3.383, Beta= -0.163, t=-2.884, p  = 0.004) were negatively associated with greater feelings of anxiety and depression in the studied cardiac patients. While statistically significance positive associated found with being married (B = 1.210, Beta = 0.125, t = 2.223, p  = 0.027), onset (B = 0.585, Beta = 0.198, t = 3.474, p  = 0.001), presence of additionally diseases (B = 12.491, Beta = 0.388, t = 6.098, p  = 0.001) and Family history (B = 4.068, Beta = 0.161, t = 3.234, p  = 0.001). To validate the relationship between the study variables, a regression analysis was performed, with the HAD scale as the mediator variable, PCCNP as the independent variable, and Kinesiophobia as the dependent variable. Model 1 shows that there is a moderate negative correlation (B=-0.295, Beta= -0.409, t=-8.061, p  < 0.001) between the PCCNP questionnaire on HAD (R2 = 0.470, Adjusted R2 = 0.449, F = 22.512, p  < 0.001). This means that the majority of being caring toward cardiac patients, the minor the feeling of anxiety and depression. Model 2 illumines that there is a high positive correlation (B = 0.377, Beta = 0.366, t = 0.762, p  = 0.447) between the PCCNP questionnaire on Kinesiophobia (R2 = 0.080, Adjusted R2 = 0.073, F = 11.375, p  < 0.001). In addition to being statistically significant, the beta coefficient for the Model2 effect of PCCNP q in the model is -0.295. This indicates that a lower Tampa Scale for Kinesiophobia score is linked to a stronger Model2 effect of PCCNP. Regression analysis results indicate that PCCNP is associated with decreased anxiety, despair, and mobility fear, suggesting that it is a helpful intervention for ICU cardiac patients (see Table  2 ).

Table  3 illustrates the correlation the relationship between anxiety, depression, nurse-patient care, and fear of movement in cardiac patients. The mean scores of HADS, PCCNP q, and TSK of 265 cardiac patients were 21.92± (10.36), 43.83± (14.39), and 50.54± (10.67), respectively. HADS had a strong correlation with the PCCNP q ( r  = 0.968), and the TSK ( r  = 0.992). This suggests that cardiac patients with higher anxiety and depression scores were also more likely to report symptoms of kinesiophobia and to experience PCCNP deficits. Pearson’s correlation analysis exposed that HADS were significantly negatively correlated between the scale PCCNP (r:-0.510, p  < 0.001) while significantly positively correlated Tampa Scale for Kinesiophobia (r: 0.271, p  < 0.001) correspondingly. Also, a significant positive correlation between the PCCNP questionnaire and the Tampa Scale for Kinesiophobia was found ( r  = 0.154, p  = 0.012) (see Table  3 ).

The study assessed the mediating role of HAD in the relationship between nursing care and kinesiophobia ( see Table  4 & Fig.  2 ). The results revealed a statistically significant direct effect (-0.367, CR= -9.628, p  < 0.001)) of the effect of PCCNP on HADS. This means that cardiac patients have less anxiety and depression when receiving Person-Centered Critical Care Nursing. Furthermore, the direct effect of Person-Centered Critical Care Nursing (-0.015, CR = 0.302, p  = 0.763) on Kinesiophobia in the presence of the mediator was also found to be not statistically significant. This indicates that there is no association between cardiac patients’ kinesiophobia and PCCNP upon ICU admission. Nonetheless, PCCNP indirectly affects kinesiophobia through HADS. With an indirect effect of -0.099, statistical significance is achieved. This indicates that by lowering anxiety and despair, PCCNP helps cardiac patients who are afraid to move. Hence, HADS partially mediated the relationship between Person-Centered Critical Care Nursing and Kinesiophobia. This means that in the model (Fig.  2 ), there is a significant negative correlation of 33.248 (< 0.001) in Path analysis.

Path analysis to detect the Direct and Indirect Effect of Person-Centered Critical Care Nursing on Kinesiophobia mediating by Hospital Anxiety and Depression Scale (HADS). Model fit parameters CFI; IFI; RMSEA (1.000; 1.000; 0.350). CFI = Comparative fit index; IFI = incremental fit index; and RMSEA = Root Mean Square Error of Approximation. Model χ 2 ; significance 33.248 * (< 0.001 * )

The overarching aim of the current study was to examine the intricate associations between cardiac patients’ perceptions of nursing care and variables such as Kinesiophobia, depression, and anxiety. The empirical findings unveiled both direct and indirect impacts of person-centered critical care nursing on kinesiophobia. The mediation role played by anxiety and depression in this relationship provides a nuanced understanding of the multifaceted dynamics influencing patient outcomes within critical care settings. The direct effect implies that the implementation of person-centered care practices independently contributes to the amelioration of kinesiophobia among cardiac patients. This discernment underscores the intrinsic value of personalized and empathetic approaches inherent in person-centered care, engendering a heightened sense of control and comprehension for patients.

Bäck et al. emphasized that cardiac patients exhibit high levels of kinesiophobia, with a prevalence rate of 20% [ 9 ]. However, there is a lack of studies investigating kinesiophobia specifically in Egypt.

The indirect effect, mediated by anxiety and depression, underscores the intricate interplay between psychological factors and kinesiophobia in the context of critical nursing care. Anxiety and depression can heighten the perception of the threat associated with physical activity, leading to an exaggerated fear of movement or re-injury. These psychological states can impair coping mechanisms, reducing patients’ ability to manage and tolerate discomfort or perceived risk during physical activity, further reinforcing kinesiophobia. Additionally, anxiety and depression can contribute to a negative cycle of avoidance behavior, where patients withdraw from physical activities that they perceive as threatening, leading to deconditioning and increased kinesiophobia [ 40 ].

The correlation between the PCCNQ and the Kinesiophobia, suggests that patients who experience person-centered critical care nursing deficits are also more likely to report symptoms of kinesiophobia. This makes sense, as person-centered critical care nursing is designed to promote patients’ autonomy, control, and decision. Nursing care plays a crucial role in addressing these conditions, and significantly impacts the effectiveness of interventions. Patients who do not feel supported or understood by their caregivers may develop a sense of mistrust or fear, leading to increased anxiety about engaging in physical activities that could exacerbate their condition. Feeling neglected or misunderstood by healthcare providers may lead to a sense of vulnerability or lack of control, contributing to fear of movement. Furthermore, patients who perceive deficits in person-centered care may also be more likely to experience higher levels of overall distress, which can manifest as kinesiophobia [ 22 ].

The perception of nursing care among cardiac patients can significantly influence their levels of anxiety, depression, and subsequently, their experience of kinesiophobia. A positive perception of nursing care, characterized by empathy, attentiveness, and effective communication, can help alleviate anxiety and depression by fostering a sense of security and support. Patients who feel well-cared for may be more likely to engage in physical activities without excessive fear, reducing kinesiophobia. Conversely, a negative perception of nursing care, marked by perceived neglect, inadequate communication, or lack of support, can contribute to heightened anxiety and depression levels among patients. This negative experience may reinforce kinesiophobia as patients may feel less confident in their ability to safely engage in physical activities. Therefore, the perception of nursing care plays a crucial role in shaping the psychological well-being of cardiac patients and their ability to overcome kinesiophobia [ 41 , 42 ]. This result emphasizes the interconnectedness of physical and psychological well-being, suggesting that improvements in mental health may play a pivotal role in alleviating kinesiophobia.

Consistent with this result, the investigation conducted by Bastani, et al. in 2022 [ 32 ], suggests that streamlining the admission and hospitalization processes for elderly patients in age-friendly medical facilities could potentially lead to a reduction in stress, anxiety, and depression among this demographic. Notably, hospitals with a clinical emphasis demonstrated high scores in care quality, corresponding to lower scores in anxiety and depression.

Furthermore, in their 2021 study, Westas and colleagues [ 27 ] found that patients with cardiovascular disease (CVD) often felt neglected in terms of their psychological needs, with healthcare professionals in cardiac care frequently overlooking depressive symptoms. The study emphasizes the importance of healthcare providers considering the overall well-being of CVD patients to identify and address depressive symptoms, fostering trust and preventing worsening health trajectories. Empowered CVD patients who can express their needs are more likely to receive assistance for depressive symptoms. To strengthen patient-provider relationships and support patients’ ability to address their needs, healthcare professionals should actively discuss and assess depressive symptoms, encouraging patients to express emotional challenges.

The intricate relationship between anxiety and cardiac issues creates a cycle wherein patients may exhibit altered movement patterns and behaviors. Heightened hypervigilance stemming from anxiety can make individuals acutely aware of bodily sensations associated with their cardiac condition, leading to a reluctance to engage in physical activities. This avoidance may extend to situations or activities perceived as potential triggers for discomfort or cardiac events, resulting in a sedentary lifestyle that exacerbates physical deconditioning. Patients may perceive exercise as a potential stressor, amplifying their anxiety and reinforcing kinesiophobia. Addressing anxiety in cardiac patients is vital not only for their mental well-being but also for breaking the cycle of kinesiophobia. Negative interpretations of symptoms influenced by anxiety further discourage participation in exercise, impacting adherence to cardiac rehabilitation programs. Social and cognitive factors, such as catastrophic thinking and social isolation, contribute to the development of kinesiophobia [ 43 ]. This is consistent with the study conducted by Fan et al. [ 44 ]., who concluded that individuals with coronary heart disease who undergo a specialized nursing intervention see improvements in various aspects, such as decreased anxiety and depression, enhanced quality of life related to angina, and better physiological outcomes.

The physical symptoms associated with cardiac conditions, such as chest pain or shortness of breath, can further contribute to a fear of movement. Additionally, cardiac rehabilitation programs especially in the acute stage, while essential for recovery, may inadvertently reinforce kinesiophobia by pushing patients to confront physical activities that trigger anxiety or discomfort. The fear of pain, injury, or exacerbating their cardiac condition can create a psychological barrier, preventing cardiac patients from engaging in regular physical activity [ 7 ]. Additionally, the current cardiac patients who have serious cardiac illnesses such as aortic aneurysm, congestive heart failure, supraventricular tachycardia or any other disease have higher levels of kinesiophobia.

The pervasive feelings of sadness and fatigue linked to depression can reduce motivation to participate in physical activities. As depression sets in, patients may lose interest in sustaining an active lifestyle, resulting in a more sedentary way of living. This decreased physical activity can lead to restricted movement, as individuals may steer clear of regular tasks or exercises that are vital for maintaining cardiovascular health [ 45 , 46 ]. The current participants revealed a higher rate of depression which is correlated positively with kinesiophobia.

Depression typically has detrimental effects on individuals, and there is no scientific basis to suggest that it positively influences fear of movement among cardiac patients. Depression, as a mental health condition, tends to exert negative impacts on various aspects of a person’s life, including physical health. In the specific context of cardiac patients, depression is associated with reduced motivation, physical symptoms such as fatigue, and cognitive impairments. These factors contribute to a heightened fear of movement among cardiac patients, as they may perceive exercise as challenging or uncomfortable [ 47 ]. Additionally, negative perceptions and beliefs about their abilities, coupled with social withdrawal, can further reinforce kinesiophobia. Inconsistent with this point, kinesiophobia is positively correlated with depression in the current study.

A cardiac diagnosis often brings about significant lifestyle changes, such as dietary restrictions, medication regimens, and the necessity for regular medical monitoring. These adjustments can lead to feelings of loss, frustration, and a sense of diminished control over one’s life, contributing to the development of depression. The physical symptoms associated with cardiac conditions, including fatigue and shortness of breath, can further exacerbate feelings of helplessness and despair [ 48 ]. The fear of mortality and the potential limitations on daily activities can instill a persistent sense of anxiety and sadness. Social isolation, common among cardiac patients due to lifestyle modifications or perceived fragility, can also contribute to the prevalence of depression [ 49 ].

Moreover, the physiological impact of cardiovascular issues on the brain, through mechanisms such as reduced blood flow or inflammation, can directly contribute to depressive symptoms. Dhar and Barton (2016) [ 50 ] concluded that the intricate relationship between Major Depressive Disorder (MDD) and Coronary Heart Disease (CHD) involves complex and multifactorial mechanisms, including the sympathetic nervous system, platelet hyperactivity, inflammation, and dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis, among others. Conducting a definitive mortality study is challenging due to the complexities and costs associated. However, the current evidence underscores the importance of optimizing efficacy and minimizing potential harm when selecting treatments for individuals with MDD and comorbid CHD. It is suggested that MDD should be regarded as a common and modifiable risk factor for CHD, similar to established factors like smoking, hypertension, and hyperlipidemia. The detrimental combination of MDD and CHD results in adverse health outcomes for both conditions, contributing to escalating movement restrictions [ 11 , 51 , 52 ].

Men in the current study revealed higher kinesiophobia, depression and anxiety. Socialization norms that dictate traditional masculine roles may lead men to suppress emotions and resist seeking mental health support. Men with cardiac disorders also may experience higher levels of stress due to concerns about their health, financial burdens, or the impact of the condition on their ability to fulfil societal roles [ 53 ]. If they lack adaptive coping mechanisms or perceive seeking help as a sign of weakness, they may be more prone to developing symptoms of depression and anxiety. Moreover, cardiac disorders can lead to physical limitations and lifestyle changes, affecting an individual’s sense of identity, self-esteem, and independence [ 54 ]. For males who traditionally associate their self-worth with physical prowess and independence, these changes may be particularly challenging to navigate, contributing to feelings of depression and anxiety. The fear of exercise, particularly in the context of cardiac disorders, may further contribute to psychological challenges [ 41 , 55 ].

Cardiac patients engaged in craft work who also experience financial constraints may exhibit heightened levels of kinesiophobia individuals with limited financial resources may face challenges accessing appropriate healthcare and rehabilitation services, hindering their ability to receive tailored guidance on safe and gradual physical activity [ 7 , 56 ]. The fear of exacerbating their cardiac condition without proper supervision could intensify their aversion to movement. Furthermore, the economic strain itself may contribute to heightened stress and anxiety, as financial worries are known stressors [ 57 ]. This additional psychological burden can magnify concerns about the potential risks associated with physical exertion, reinforcing kinesiophobia. Moreover, engaging in craft work may involve prolonged periods of sedentary behavior, which can contribute to deconditioning and a heightened sense of vulnerability during physical activity [ 11 ]. The intersection of financial constraints, limited access to healthcare resources, and the sedentary nature of certain occupations can thus create a complex interplay that fosters kinesiophobia among cardiac patients involved in craft work with insufficient income.

A notable correlation was observed between the perception of nursing care and kinesiophobia anxiety and depression in the cardiac participants. Patient’s demographic and clinical characteristics such as being female, married, having sufficient income, experiencing the onset of cardiac disease, having comorbid health conditions, and having a family history are associated with the reduced likelihood of heightened feelings of anxiety and depression among participants. The regression analysis revealed that the perception of nursing care is negatively linked to anxiety, depression, and mobility-related kinesiophobia among the studied rural cohorts.

Implication

The study’s outcomes are of vital necessity in customizing an individualized cardiac rehabilitation program (CR) based on the emotional experience of cardiac patients, which will be conducive to rehabilitation and prognosis for patients, thereby lessening the physical burden and improving their quality of life. Additionally, it grants the interdisciplinary collaboration of the nursing staff, physicians, and psychologists to lay out psychoprophylactic programs and take precautions against kinesiophobia by reducing feelings of fear and anxiety linked to it among post-CVD patients. The existing findings also have implications for holistic nursing care in terms of early identification of barriers to physical activity, improved effectiveness of the recovery process, and averting recurrent hospital stays. Considering the relationship of kinesiophobia with mild to moderate physical activity, clinicians may have taken precautions against encouraging individuals with MI to engage in physical activity. Further studies should detail the relationship between physical activity and kinesiophobia in more comprehensive physical activity monitoring from MI patients with a pedometer or sensor-based devices.

Data availability

No datasets were generated or analysed during the current study.

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Acknowledgements

We express our heartfelt gratitude to all individuals who took part in the study.

The present study did not get any dedicated financial funding from public, commercial, or not-for-profit funding organizations.

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Mohamed Hussein Ramadan Atta: find the research problem, revise of translation, data collection, conceptualize the discussion, and write and edit the first draft. Shimmaa Mohamed Elsayed: theoretical framework, write protocol, data collection, statistical analysis, tabular& and graphical presentation data. Sharaf Omar Al Shurafi: data collection, methodology, paraphrasing and language checking. Rasha Salah Eweida: translation of questionnaire, data collection, methodology, write&edit final draft.All authors have agreed on the final version and meet at least one of the following criteria (recommended by the ICMJE [http://www.ic mje.org/recommendations/]:

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Atta, M.H.R., Elsayed, S.M., Shurafi, S. et al. The mediating role of cardiac patients’ perception of nursing care on the relationship between kinesiophobia, anxiety and depression in rural hospitals: a cross-sectional study. BMC Nurs 23 , 238 (2024). https://doi.org/10.1186/s12912-024-01875-3

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Article Contents

Cardiovascular nursing research: challenges and opportunities.

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Chantal F Ski, David R Thompson, Cardiovascular Nursing Research: Challenges and Opportunities, European Journal of Cardiovascular Nursing , Volume 10, Issue 1, 1 March 2011, Pages 1–2, https://doi.org/10.1016/j.ejcnurse.2010.09.002

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Cardiovascular nursing has developed markedly in recent decades and research is now being seen as a legitimate activity. Cardiovascular nurses and nursing have made significant research contributions in key areas, notably in the design and evaluation of cardiac rehabilitation [ 1 , 2 ], secondary prevention [ 3 , 4 ] and heart failure disease management programmes [ 5 , 6 ]. This work has informed not only the evidence base for interventions and outcomes but also for guidelines and policies. However, there remain important and pressing research questions regarding why some of these programmes vary, for example in terms of design and outcomes [ 7 , 8 ], and these need to be acknowledged.

Many of these cardiovascular disease management programmes are multi-faceted and diverse in design with a multitude of contextual factors. They are essentially complex interventions and new approaches may be needed to seek explanations regarding their appropriateness, feasibility and effectiveness. Three major challenges appear to face nursing about such programmes: what is the strength of evidence; what works for who, when and why; and how best to evaluate complex interventions? [ 9 ]. It is therefore essential to establish reliable and robust evidence on prevention and management of cardiovascular disease. By doing so, this will provide a solid foundation on which to progress a systematic approach to nursing research into cardiovascular disease.

If nurses are to engage fully in this research enterprise they need to rapidly shift their focus and efforts. There remain significant challenges not only in terms of research capacity and capability but also sustainability. Nurses need to think bigger about research [ 10 ] with appropriate vision, strategy, focus, energy and confidence. What is needed is a ‘paradigm shift’ to harness the expertise and capacity that currently exists and apply these efforts to large-scale, multi-centre, team-led, thematic programmes of research [ 11 ]. This should not only apply to nursing but in collaboration with other disciplines to be truly inter-/multi/trans-disciplinary.

Local collaboration is all well and good but to have real significance and impact it needs to move to a national and international level to conceive, design, conduct and disseminate original research. There are some good examples of international networking and research collaboration in cardiovascular nursing, including the UNITE (Undertaking Nursing Interventions Throughout Europe) research group of the European Society of Cardiology Council on Cardiovascular Nursing and Allied Professions [ 12 , 13 ]. However, if it is to be truly collaborative and to have ‘reach’, nursing research should be strongly linked with medicine, the basic sciences and the social sciences.

Such an enterprise is likely to yield improved productivity in terms of generating and addressing key research questions that span bench to bedside (translational research), outputs (including publications, grants, and research training) and succession planning (training and development of the next generation of researchers).

Research is now indeed a global enterprise and international collaboration is not only desirable but necessary [ 14 ]. The advent of the World Wide Web and the Internet make this mission all the more attainable. Groups have greater stores of knowledge and research capacity than individuals. Nurses have an important role to play in the advancement of cardiovascular research. Nurses are appositely placed within cardiovascular health services to initiate, engage and lead collaborative research projects that will lead to rapid clinical changes and improved patient outcomes. If they truly wish to be seen as equal partners now is the time to seize the opportunity and rise to the occasion of the new generation of nursing scholars who are engaging in assiduous interdisciplinary cardiovascular health research.

[1]   Thompson   D R   Cardiac rehabilitation: adding years to life and life to years   J Res Nurs   14   2009   207 – 219

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[4]   Wood DA et al Wood DA, Kotseva K, Connolly S, Jennings C, Mead A, Jones J, Holden A, De Bacquer D, Collier T, De Backer G, Faergeman O, on behalf of EUROACTION Study Group. Nurse-coordinated multidisciplinary, family-based cardiovascular disease prevention programme (EUROACTION) for patients with coronary heart disease and asymptomatic individuals at high risk of cardiovascular disease: a paired, cluster-randomised controlled trial. Lancet 2008;371:1999–2012

[5]   Stewart   S , Pearson   S , Horowitz   J D   Effects of a home-based intervention among patients with chronic congestive heart failure   Arch Intern Med   158   1998   1067 – 1072

[6]   Jaarsma   T , van der Wal   M , Lesman-Leegte   I , Luttik   M , Hogenhuis   J , Veeger   N et al.    Effect of moderate or intensive disease management program on outcome in patients with heart failure coordinating study evaluating outcomes of advising and counseling in heart failure (COACH)   Arch Intern Med   168   2008   316 – 324

[7]   Clark   A M , Thompson   D R   The future of heart failure disease management programs   Lancet   372   2008   784 – 786

[8]   Clark   A M , Savard   L A , Thompson   D R   What is the strength of evidence for heart failure disease management programs?   J Am Coll Cardiol   54   2009   397 – 401

[9]   Clark   A M , Thompson   D R   Deepening evidence into heart failure management programs: insights from complexity science   Eur J Heart Fail   2010

[10]   Thompson   D R   Thinking bigger about research   J Adv Nurs   43   2003   1 – 2

[11]   Thompson   D R   Research partnerships and collaboration in cardiovascular nursing   Eur J Cardiovasc Nurs   3   2004   261 – 262

[12]   Jaarsma   T , Strömberg   A , Fridlund   B , de Geest   S , Mårtensson   J , Moons   P et al.    On behalf of the UNITE research group. Sexual counselling of cardiac patients: nurses' perception of practice, responsibility and confidence   Eur J Cardiovasc Nurs   9   2010   24 – 29

[13]   Axelsson   ÅB , Fridlund   B , Moons   P , Mårtensson   J , Norekvål   T M , Scholte op Reimer   WJ M   The Undertaking Nursing Interventions Throughout Europe (UNITE) Study Group. European cardiovascular nurses' experiences of and attitudes towards having family members present in the resuscitation room   Eur J Cardiovasc Nurs   9   2010   15 – 23

[14]   Thompson   D R   International collaboration and sharing lessons learned   J Res Nurs   11   2006   285 – 287

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Evidence-Based Practices in the Cardiac Catheterization Laboratory: A Scientific Statement From the American Heart Association

• PMID: 34187171
• DOI: 10.1161/CIR.0000000000000996

Cardiac catheterization procedures have rapidly evolved and expanded in scope and techniques over the past few decades. However, although some practices have emerged based on evidence, many traditions have persisted based on beliefs and theoretical concerns. The aim of this review is to highlight common preprocedure, intraprocedure, and postprocedure catheterization laboratory practices where evidence has accumulated over the past few decades to support or discount traditionally held practices.

Keywords: AHA Scientific Statements; cardiac catheterization; evidence based; percutaneous coronary intervention.

Publication types

• American Heart Association
• Cardiac Catheterization* / methods
• Cardiac Catheterization* / standards
• Clinical Laboratory Services
• Clinical Laboratory Techniques
• Evidence-Based Medicine* / methods
• Evidence-Based Medicine* / standards
• Health Care Surveys
• Laboratories, Clinical
• Perioperative Care / methods
• Perioperative Care / standards
• United States

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Exploring Nursing Strategies to Engage Community in Cardiovascular Care

• Diversity and Health Equity in Cardiology (AE Johnson, Section Editor)
• Published: 04 September 2023
• Volume 25 , pages 1351–1359, ( 2023 )

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• Jewel Scott   ORCID: orcid.org/0000-0001-5103-6087 1 ,
• Stephanie Burrison 2 ,
• Mia Barron 2 ,
• Ayaba Logan   ORCID: orcid.org/0000-0002-7430-6358 3 &
• Gayenell S. Magwood   ORCID: orcid.org/0000-0002-2451-4888 1  

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Purpose of Review

This review aims to highlight some of the strategies nurses use to engage community members in cardiovascular care. We also elaborate on opportunities for improving community engagement.

Recent Findings

Community engagement occurs across a continuum of progressive levels of community involvement, impact, trust, and flow of communication. Successful community engagement has been shown to improve both patient-centered care and intervention design, implementation, and dissemination. Nurse strategies used for engaging community in cardiovascular care included more examples of outreach, consult, and involvement than collaboration and shared leadership.

More attention is needed toward strategies that embrace collaboration and enhance trusting relationships to advance to shared leadership. Nurses must intentionally work in partnership with communities to improve cardiovascular health for all. Furthermore, assessing meaningful community engagement is necessary to achieve the desired outcomes, including optimal cardiovascular health and thriving communities.

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Introduction

Community engagement is essential for remediating the staggering racial, ethnic, gender, and economic inequities in cardiovascular outcomes [ 1 , 2 , 3 •]. Communities are groups of people connected by some shared characteristic or element of their environment. By engaging with communities, healthcare professionals invite the voices, perspectives, and experiences of the people and groups most affected by cardiovascular inequities to be integral parts of constructing interventions and other solutions [ 1 , 3 •]. Nurses are essential care team members, providing care across various settings. Therefore, examining how nurses can engage with communities to promote cardiovascular health is essential.

Recently, the American Heart Association set a goal of increasing healthy years of life from 66 to 68 for every person in the USA and 64 to 67 worldwide by 2030 [ 4 ]. Achieving this lofty and essential goal of reducing and eliminating disparities in cardiovascular health outcomes must be shared by all members of the healthcare team, including nurses. At over 4 million individuals, nurses comprise the largest segment of the healthcare workforce and are consistently recognized as the most trusted profession [ 5 , 6 ]. The discipline of nursing centers on the complex relationships between the individual, their environment, health, and the nurse as a partner in their healthcare, and this paradigm grounds all of nursing education [ 7 ]. Nurses can leverage their training to approach health holistically and deliver on the nation’s trust in the nursing profession to help actualize the goal of equity in cardiovascular health, leading to more healthy years of life for all communities. Achieving the goal of cardiovascular health equity also requires engaging communities as partners in this shared goal.

Community engagement is “working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations” to improve their health and well-being [ 8 ]. The degree of community involvement exists on a continuum, beginning with outreach as the lowest level of community involvement and extending to shared leadership with its hallmarks of bi-directionality and community as the final decision makers (Fig.  1 ). Nurses must consider how to better engage with communities in our shared goal of reducing and eliminating inequities in cardiovascular outcomes. Although 55% of nurses work in acute care settings, nurses are employed in various settings, including ambulatory care, home health, schools, and public and community health settings [ 5 ]. With the rise in cardiovascular-related risk factors (e.g., obesity, sedentary behavior) and cardiovascular disease, nurses in most practice settings care for patients with diagnosed or undiagnosed cardiovascular disease or significant cardiovascular risk factors.

Continuum of community engagement

Cardiovascular care is a broad term encompassing all organized efforts to preserve cardiovascular health. These efforts include preventing the initial development of cardiovascular risk factors (primordial prevention), identifying and intervening on existing risk factors (primary and secondary prevention), or providing knowledge and skills to manage disease and restore optimal cardiovascular health (tertiary prevention). Abundant research makes clear the harms of structural and social factors on essential cardiovascular health behaviors and biomarkers [ 9 , 10 , 11 ]. Structural determinants of health are foundational factors that provide the necessary context to understand how social determinants constrain people’s choices and opportunities (e.g., access to nutritious foods and safe spaces for physical activity) and their access to health care services [ 9 , 10 , 12 ]. Historically social drivers of cardiovascular health have been underappreciated and underrepresented in cardiovascular care and research. This lack of attention is evidenced by extant publications decrying the insufficient research on these social drivers and, even more recently, a boon in the spotlight on social and structural factors [ 10 , 11 , 13 ]. In case there was still doubt about the influence of social and structural factors on health, including cardiovascular health, the COVID-19 pandemic illuminated this relationship in undeniable ways [ 14 , 15 , 16 , 17 ]. Now, nurses, other clinicians, and health workers must focus on these social factors. We aim to summarize strategies nursing professionals use to engage communities in cardiovascular care and identify gaps along the community engagement continuum. We conclude with recommendations for prioritizing community engagement in cardiovascular care, research, and suggestions for evaluating meaningful community engagement.

Community Engagement Continuum in Cardiovascular Care

Community engagement is a powerful tool for catalyzing the behavioral, social, and environmental change necessary to improve communities’ cardiovascular health and overall well-being. The Centers for Disease Control (CDC) describes community engagement as a continuum of community involvement, spanning from outreach, with less community interaction, to shared leadership which typically evolves out of partnerships and invested time in building relationships with community stakeholders (Fig.  1 ) [ 8 ]. “At each successive level of engagement, community members move closer to being change agents themselves rather than targets for change, and collaboration increases, as does community empowerment” p. 23 (CDC, 2011, p. 23) [ 8 ]. In consultation with a research librarian (informationist), we identified published articles describing strategies nurses use along this continuum to provide cardiovascular care and to restore power to communities to improve cardiovascular outcomes. While we discuss these levels as distinct steppingstones leading to shared leadership, in practice, there are often degrees of overlap, and a singular intervention could exemplify elements of outreach, consult, or collaborate.

Community outreach is the first step in the community engagement continuum and typically includes little involvement from the community. Nursing strategies commonly used at the outreach level of community engagement include the following: (a) providing health education in the home or other community-based venues, (b) screening for cardiovascular risk factors (e.g., hypertension) in schools, churches, and other community settings, and (c) supporting care transitions from the hospital to the community [ 18 , 19 , 20 , 21 , 22 ]. Nurses are skilled at extending healthcare care beyond traditional healthcare settings. In the tradition of Lillian Wald, a noted nurse, and social worker from the early twentieth century who practiced nursing in the homes of immigrants, community outreach often situates nurses in the homes of patients recovering from acute cardiovascular events or patients with uncontrolled cardiovascular disease risk factors [ 23 ]. For example, participants in a 4-week nurse-led stroke self-management support program that included a home visit, group session at a community center, and follow-up telephone support saw significant improvements in self-efficacy and performance of self-management behaviors compared with the usual care group [ 20 ].

Another example is faith community nurses who are naturally embedded in community settings and are available for blood pressure screenings. A network of faith community nurses implemented a monthly blood pressure screening protocol and provided education and referrals for untreated community members. They noted opportunities for improving the referral process and communication with the healthcare system, especially for those already treated for hypertension, although not at goal [ 18 ].

A hallmark of community engagement at the outreach level is the unidirectional flow of communication from the nurse to the community to inform or educate. A nurse-led randomized control trial compared transitional care delivery of nurse practitioners, nurse practitioners combined with health coaches and usual care on post-stroke rehospitalization and blood pressure [ 21 ]. The NP provided in-home and telephone support, yet no statistical differences were observed in either outcome. The authors concluded that more research should focus on how to optimize usual care services; however, it is also plausible that future research could obtain perspectives from the community on intervention design, including wrap-around support to address social risks (e.g., food insecurity) and preferences for video over telephone support. Engaging community resources and creating an intervention from the community perspective may have yielded a different outcome. Community outreach alone is insufficient to achieve the transformation needed to eliminate the persistent inequities in cardiovascular health outcomes.

Consultation in the community is a reciprocal process involving a genuine partnership between the community and a service provider [ 8 ]. Nursing strategies to complete these consults are similar to outreach, although with more community involvement. For example, home visits, telephone follow-ups, patient education, and one-on-one coaching are combined with a participant evaluation of the intervention. Instead of the unidirectional communication flow that occurs in outreach, at the consult stage, communication is more transactional. In the post-stroke intervention described previously, they included semi-structured interviews after the intervention to obtain participant feedback [ 24 ]. The participants expressed enhanced confidence in their ability to perform self-management activities. They also appreciated emotional support from the nurse, and many participants wished for more nurse visits, suggesting modifications that could be made in future iterations [ 24 ]. The ENABLE CHF-PC program asked patient-caregiver dyads to be “consultants” to the study team by participating in translating an oncology palliative care intervention for use with clients with class III/IV heart failure [ 25 ]. Advanced practice nurses provided weekly telehealth coaching sessions and led dyads through a guidebook. After participants experienced the intervention, they were asked to give specific feedback about the ENABLE CHF-PC intervention, including suggestions for tailoring the content. This patient and family caregiver input early in the design process before a larger clinical trial was an essential part of the formative work to improve the intervention for future heart failure patients.

Community engagement should be a continuous and iterative process with community members deeply involved in all aspects of the planning and implementation of change. Involvement, collaboration, and true shared leadership foster the partnerships needed to address the longstanding inequities in cardiovascular disease. Beginning at the involve stage of community engagement and beyond, there are fewer and fewer examples of nurses engaging with communities in this type of authentic manner [ 26 •]. Recently, Alvarez and colleagues [ 27 •] detailed their process of developing and implementing an interprofessional training program for community health workers and nurse case managers in collaboration with community health centers to address hypertension disparities. Participatory communication, an essential component of involved community engagement, was evident in the descriptions of the community advisory board that helped to prepare for the training, including developing job descriptions for the new roles and input on curricular content [ 27 •]. Pairing nurses with community health workers is an innovative way to leverage the medical and health expertise of nursing staff and combine it with the shared experience and emic perspective of community members who often share more commonalities with patients and can provide needed support and address social risks such as housing instability [ 26 •, 27 •]. Notably, the preparation for the intervention included interprofessional training on the different roles, best practices for communication and patient engagement, and content on cardiovascular disease and risk factors.

Collaborate

Collaborate features community members in an active role at each stage of the intervention, including identifying the problem, supporting the development of the intervention or activity, and participating in the implementation and evaluation. An example is the adaptation of the NHLBI With Every Heartbeat is Life (WEHL) program done in collaboration with a faith-based community [ 28 ]. The nurse collaborated with local churches and pastors to provide education, support, and implement community health programs such as the WEHL program. One of the keys to success was the pastor’s role in tailoring the intervention to the local congregation [ 28 ].

At the collaboration level of community engagement, communication becomes interactive rather than transactional. An example is a community-academic partnership born from community members identifying a need and nurse educators integrating community voices into nursing education [ 29 ]. The Critical Service-Learning project was a collaboration between nursing educators, students, and community stakeholders (e.g., a nurse practitioner and parish nurse) to respond to the need for improved early cardiovascular disease screening. Community members participated in class discussions and co-teaching, which provided the “insider” perspective and information useful in linking to root causes of health inequities. An essential distinction for critical service-learning projects is the intentional consideration of the inequities that have led to the need for the project. Moreover, critical interrogation of the why and history behind the problem is necessary for partnerships to continue evolving into shared leadership.

Shared Leadership

Shared leadership is the ultimate stage of community involvement and must be utilized more by nurses and other health researchers. Many community initiatives may begin as something other than a shared leadership format yet evolve over time into solid partnerships. These partnerships recognize and support community members as decision-makers and ultimately can produce a broader community impact. In 2020, Nolan and colleagues were preparing to implement a project to increase the representation of Black men in cardiovascular clinical trials when the COVID-19 pandemic halted most activities [ 30 •]. The academic and community partners had been working together throughout the study design process and applying principles of community-based participatory research (CBPR) to reckon with the complex origins of medical mistrust. The foundation of trust and partnership permitted them to nimbly modify the plans and focus on responding to the COVID-19 pandemic. Ultimately, the community participants took the lead in transforming channels of communication to include virtual small group sessions to provide support and information sharing during the crisis. Although the researchers’ focus was on the retention of research participants, their openness to shared leadership was transformative and resulted in a broader impact. Notably, the team still retained 74% of the research participants. Although virtual community engagement was necessary during the COVID-19 pandemic, many partnerships were formed from in-person dialogue and team building that pre-dated the pandemic. Looking ahead, nurses will need to remain in conversation with community members to determine when virtual community engagement is preferred and be aware of potential limitations, such as excluding individuals with poor internet access.

Expanding Nursing Strategies for Community Engagement in Cardiovascular Care

The future of nursing 2020–2030 report calls for strengthening nursing capacity and expertise to support the imperative to achieve health equity [ 31 ]. Part of the expanded capacity and expertise should focus on principles of community engagement. Current nursing education is heavily weighted toward acute care practice, although more than a third of nurses practice in non-acute settings [ 5 ]. Clearly, focused training is needed to increase the knowledge and skills needed to engage with communities effectively to address cardiovascular health. A recent curriculum that was used to prepare nurses to implement a hypertension focused intervention is an example that could be adapted to fit other disease processes [ 27 •]. The Preventive Cardiovascular Nurses Association ( https://pcna.net ) has online certificates available in behavior change and cardiovascular nursing, and there is room for expanding the content to include developing and implementing community-engaged cardiovascular interventions.

Nurses can advocate for and lead the expansion of co-creation of interventions with the intended end users from the community [ 27 •, 32 , 33 •]. Voorberg [ 32 ] distinguishes co-creation as an active process versus participation which is more passive. There are many nursing studies with end users participating by providing feedback on an intervention [ 24 , 26 •], but fewer with community members as co-designers [ 32 ]. Ramos and colleagues [ 33 •] detail their use of intervention mapping, a structured, six-step process, to guide the co-creation of an intervention for cardiovascular disease prevention with Black and Latinx sexual minority men with HIV. Co-implementation of an intervention can be used alone or paired with co-creation to extend the involvement of community members and stakeholders (Fig.  2 ). For example, working with a community advisory board to co-create the intervention and partnering nurses and community health workers as co-implementers [ 27 •, 34 ]. It is worth noting that understanding the research process and restrictions imposed by funders or institutions is a common challenge when co-producing research with community advisors [ 35 ]. In addition to investing the time to develop a strong partnership with a community advisory board, another innovative approach is developing a community science academy to introduce the research process to community members and foster more citizen science [ 36 , 37 ]. An organizational community advisory board in Arkansas suggested the idea of a community science academy and were partners in co-creating the program to increase research participation from communities typically underrepresented in research [ 36 ].

Strategies to engage communities in cardiovascular care

Evaluating Meaningful Community Engagement in Cardiovascular Care

Evaluating community engagement processes should be incorporated into future nursing strategies. Recently, the National Academy of Medicine (NAM) identified four domains of measurable outcomes for meaningful engagement: strengthened partnerships and alliances, expanded knowledge, improved health and health care, and thriving communities [ 38 ]. Health outcomes are the most included category to evaluate the effectiveness of the research or quality improvement project, as they are often the focus of externally funded research. However, the published research should also include detailed descriptions of the community partners, assessments of the partnerships, and/or assessments of the impact on the larger community. The partnership self-assessment tool (PSAT) is one example of a tool designed for measuring the synergy between community partners but has been used to evaluate community engagement [ 39 , 40 ]. Of note, partnership synergy as used by this tool, is much more akin to engagement than the passive partnership that is representative of the lower levels of community engagement (e.g., consult, involve). Another example is the partnership readiness for community-based participatory research (CBPR) model. Nurse researchers in South Carolina defined major dimensions and key indicators of partnership readiness and designed a toolkit that included individual partner assessments and team assessments to guide follow-up discussions for action plans [ 41 ]. There is a need for continued instrument refinement specifically for assessing community engagement from the perspective of multiple stakeholders and to complement the existing qualitative descriptions of community engagement. This is a priority for researchers and practitioners.

Incorporating process and formal evaluation measures into the intervention’s objectives will support nurses engaged with communities to move from solely measuring individual level health-outcomes to assessing broader impacts such as community connectivity and community measures of well-being. The NAM conceptual model includes expected outcomes of meaningful community engagement, such as improved health and healthcare programs, strengthened partnerships, and culminating with thriving communities [ 38 ]. Figure  2 includes the expected outcomes of meaningful community engagement, with each advance on the continuum accompanied by a broader community impact. Nurses must be committed to growing partnerships over time and remain committed to nurturing these essential relationships if we are to reach the goal of thriving communities. Indicators of thriving communities include community connectivity, power, and well-being; more guidance on measuring these indicators will be forthcoming per the NAM publication.

Challenges Ahead

Multiple gaps and challenges remain for nurses to continue making progress toward providing community-engaged cardiovascular care (Table 1 ). Nurses need a solid understanding of the structural and social determinants of health as the foundation for understanding the need for community-engaged care and research. Nursing educators have incorporated service learning and other community-based learning experiences to scaffold knowledge and understanding of social determinants [ 29 , 42 ]. Some nurses advocate for a structural competency to be integrated into nursing education to foster an understanding of the upstream factors that lead to the social needs and risks (e.g., food insecurity) experienced by some community members [ 14 , 43 ].

Clinical training to enhance nurses’ knowledge of primordial—tertiary prevention of cardiovascular disease is needed to prepare nurses to build capacity in lay members as interventionists. Interventions that engage community members in the delivery of the intervention are more effective than interventions where community members are consulted but not part of the implementation [ 2 ]. However, lay community interventionists, such as community health workers, need accessible clinical experts, such as nurses, available to answer questions and provide clinical guidance. There is a great opportunity to develop innovative nurse models of care that pair nurses in community settings with community health workers or navigators.

Some nursing research priorities for community-engaged cardiovascular care include co-creating interventions to address the continuum of social risks, social needs, and social determinants of health (SDOH), engaging communities in health policy development, and identifying barriers to shared leadership. Multisectoral research teams are needed for community-engaged research that will identify and address social risks and unmet social needs. Multisectoral research teams bring together diverse stakeholders to co-create change and may include legislators, city and local government leaders, faith leaders, social service professionals, nurses, physicians, pharmacists, behavioral health clinicians, and patients. While more interdisciplinary collaboration and shared leadership are needed, multisectoral teams represent an intentional progression beyond the health profession disciplines. This progression reflects an awareness that other contributing factors of cardiovascular health outcomes include equitable access to education, nurturing relationships, and social systems that support thriving and not merely surviving. Multisectoral partnerships are well-positioned to promote cardiovascular health equity by addressing the continuum of SDOH, social risks, and social needs [ 44 ].

Often research that is identified as community-based or community-engaged needs more details about how communities were involved in the design process. Community involvement in every stage of the creation process, including implementation, is key. Notably, as depicted in Fig.  2 , the community engagement process continues after implementation. For example, it should continue with the dissemination of findings back to the community, and the creation process should begin anew based on the research findings and lessons learned from the current project. Through this process of designing interventions or initiatives together, implementing the plan, reporting the results, and evaluating the process, the relationships between the community and nursing professionals are nurtured and evolve into shared leadership.

Achieving optimal cardiovascular health for all will require community-engaged cardiovascular care. Many nursing interventions used outreach, consultative, or passive involvement of community members. However, we also identified examples of nurse-led interventions that are collaborative and co-designed with community members, an essential step in the progression toward mutual trust and shared leadership. Incorporating methods to evaluate the community engagement process meaningfully may aid more teams in reaching the shared leadership stage. Additionally, social risk factors, social needs, and determinants of health must be a high priority for future interventions and must be done in collaboration with communities to identify and prioritize needs and to co-create interventions. Nurses are encouraged to seize the current momentum spurred by the COVID-19 pandemic to develop partnerships for lasting change that can lead to cardiovascular health equity.

Data Availability

The authors confirm that all data underlying the results are included in this published article and no additional source data are required. Furthermore, data supporting the findings of this article were all publicly available at the time of submission.

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Scott, J., Burrison, S., Barron, M. et al. Exploring Nursing Strategies to Engage Community in Cardiovascular Care. Curr Cardiol Rep 25 , 1351–1359 (2023). https://doi.org/10.1007/s11886-023-01949-9

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Commentary: Advancing Comprehensive Stroke Nursing Care in the 21st Century

Disclosure: Dr. Lutz has no relevant disclosures Pub Date: Thursday, Mar 11, 2021 Author: Barbara J. Lutz, PhD, RN, CRRN, PHNA-BC, FAHA, FAAN Affiliation: McNeill Distinguished Professor, School of Nursing, University of North Carolina-Wilmington

Stroke is a sudden, unexpected life event that affects nearly 800,000 persons in the U.S., 1 with an estimated 10.3 million first strokes, globally each year. 2 Approximately 23% of individuals experience recurrent stroke. 1 Racial and economic disparities in stroke persist in the U.S. and around the world. Stroke disproportionately affects black and Hispanic Americans, especially those between the ages of 45 and 59. In the REGARDS study, black participants ages 45 to 54 were four times as likely to experience a stroke when compared to whites. Women also have a greater lifetime risk of experiencing a stroke. Stroke survivors often experience post-stroke functional limitations. Stroke is the second leading cause of disability worldwide, with an estimated 80 million stroke survivors experiencing some level of functional impairment. 2

Because of the potentially devastating and lifelong impact of stroke, implementing comprehensive evidence-based nursing and interprofessional care across the continuum from hyper-acute (emergency) care through acute care, post-acute, and community reintegration is critical for optimizing outcomes for stroke patients and their family caregivers. The recently published scientific statement by Green et al. (2021), 3 which updates the 2009 statement by Summers et al., 4 focuses on one part of this continuum—post-hyperacute through acute inpatient care to pre-hospital discharge. This updated scientific statement is one of a series of three articles focusing on the most recent evidence for providing acute stroke care for patients and their families. In this article, Green and colleagues focus on the necessary assessments and interventions to optimize outcomes for patients and families prior to acute care discharge to post-acute care and/or community reintegration. 3 They integrate recommendations from multiple international organizations including the World Health Organization, 5 American Heart/American Stroke Association, 6 Australian Stroke Foundation, 7 Heart and Stroke Foundation of Canada, 8 U.K. Royal College of Physicians, 9 and others. 10, 11

The authors highlight the recent evidence related to strict monitoring of vital signs, including blood pressure and temperature, and screening for hyperglycemia and dysphagia, and provide recommended protocols for each of these. They also provide recommended assessments and interventions for monitoring neurological, cardiovascular, pulmonary, gastrointestinal, urinary, neuropsychological, mobility, and psychosocial status and potential complications throughout the acute care inpatient stay. The statement concludes with a focus on discharge planning, including recommendations for self-management, secondary stroke prevention, and caregiver education prior to discharge. 3

Some highlights from the statement include the importance of having an acute care stroke unit. Having a stroke specific unit has demonstrated improved patient outcomes, including lower mortality rates in some studies. 11 However, the authors note that because studies were not consistent in length of follow-up, outcomes, and type of inpatient care that more research should be conducted to compare effectiveness of different types of inpatient stroke care and acute stroke units.

The statement also emphasizes the critical role of comprehensive and systematic nursing assessment and intervention in the care of stroke survivors in the acute care setting. Initial and ongoing assessments of vital signs including blood pressure, temperature, respiratory rate and effort, oxygen saturation, and level of consciousness. Implementing best practices for fever management, hyperglycemia, and swallowing difficulties are crucial to prevent avoidable post-stroke complications. 12-15 For example, in a randomized clinical trial in Australia, addressing these three areas within the first 72 hours demonstrated a reduction in mortality and improved function. 12,13 These outcomes, when combined with care on an acute stroke unit, were sustained long-term. The statement also discusses the implications of impaired mobility and advocates for a “formal rehabilitation assessment” during the inpatient stay. 3

Strengths of the statement include the inclusion of a global perspective and integration of evidence-based practices from a number of guidelines and randomized controlled trials from around the world. The statement also provides nurses and other members of the interprofessional team with a path to follow in providing the best care to stroke patients from admission to the acute care inpatient unit through to discharge planning. Gaps noted by the authors are the need for more research focused on defining the specific elements of specialized nursing care for stroke and studies to determine the impact of nursing care, and specifically care provided by stroke certified nurses, on patient outcomes. 3

The authors highlight that the transition from acute care back to the community is “one of the most vulnerable and significant periods in the continuum of care for patients and families”. 3 They include a table of recommended discharge planning topics. However, in order to better tailor discharge plans for stroke survivors and their family caregivers, the gaps in caregiver readiness to assume the caregiving role also needs to be assessed. Camicia et al’s. 2020 AHA CVSN Stroke Nursing Article of the Year provides a promising new tool to address this gap in practice. 16 While the tool was developed and found to be psychometrically valid and reliable for caregivers of patients receiving acute inpatient rehabilitation, 17 the readiness domains may similarly apply to caregivers of post-stroke patients being discharged directly home from acute inpatient care. These readiness domains can be used in conjunction with the discharge planning items included in the statement by Green et al. 3 to better tailor care plans to prepare family members for assuming the caregiving role. This type of assessment is especially important during this time of the COVID-19 pandemic where more patients recovering from stroke, who might normally be discharged from acute care to inpatient, sub-acute, or outpatient rehabilitation settings, are being discharged directly home, to be cared for by family members, often without additional services.

The article by Green and colleagues is an excellent step forward for implementing evidence-based stroke care. It, in conjunction with the other two papers in the series, provides us with the best practices for advancing stroke care within the acute care setting. The next step is to expand our view of comprehensive stroke care to encompass the entire trajectory from onset to community reintegration with a focus on long-term patient and caregiver outcomes.

Duncan et al. 18 , propose a “paradigm shift” in how we conceptualize “comprehensive” stroke care. In her paper, based on her 2020 Sherman Lecture at the AHA International Stroke Conference, Dr. Duncan and colleagues encourage stroke systems of care and stroke care providers to view stroke care proactively and to anticipate the patients’ and families’ needs for rehabilitation, recovery, and community reintegration beyond the acute care phase. They recommend expanding quality metrics to include post-acute care and longer-term patient and caregiver outcomes. This paradigm shift would require 1) establishing criteria for comprehensive stroke centers to be classified as “rehabilitation ready”; 2) expanding the American Heart Association GWTG-Stroke program to include metrics for rehabilitation readiness and 90-day patient outcomes; and 3) developing “hopeful and actionable messaging for secondary prevention and recovery of function and health”. 18

To meet these goals, Duncan et al. suggest several criteria that could be used to classify comprehensive stroke centers as being “rehabilitation ready”. These include 1) integrating and coordinating community-based post-acute care follow-up in acute care neurology clinics, 2) establishing an advisory panel of rehabilitation experts (physicians, nurses, therapists), community-based service providers, patients, and caregivers; 3) assessing and addressing unmet social needs through coordination and integration with community-based services; and 4) establishing metrics to evaluate transition planning to facilitate transfers to the appropriate level of post-acute care and linkages to community-based services, including lifestyle management programs. 18 Stroke nurses and other members of the interprofessional team can take the lead in advocating for this paradigm shift to ensure that stroke care is truly comprehensive and traverses the care continuum beyond acute care to better address the long-term needs of stroke survivors and their family caregivers.

• Green TL, McNair ND, Hinkle JL, Middleton S, Miller ET, Perrin S, Power M, Southerland AM, Summers DV; on behalf of the American Heart Association Stroke Nursing Committee of the Council on Cardiovascular and Stroke Nursing and the Stroke Council. Care of the patient with acute ischemic stroke (posthyperacute and prehospital discharge): update to 2009 comprehensive nursing care scientific statement: a scientific statement from the American Heart Association [published online ahead of print March 11, 2021]. Stroke . doi: 10.1161/STR.0000000000000357
• Virani SS, Alonso A, Aparicio HJ, Benjamin EJ, Bittencourt MS, Callaway CW, Carson AP, Chamberlain AM, Cheng S, Delling FN., et al. Heart disease and stroke statistics - 2021 update: a report from the American Heart Association. Circ. J . 2021;143:e1-e490 https://www.ahajournals.org/doi/10.1161/CIR.0000000000000950
• GBD 2016 Stroke Collaborators. Global, regional, and national burden of stroke, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol . 2019;18:439–458. doi: 10.1016/S1474-4422(19)30034-1
• Summers D, Leonard A, Wentworth D, Saver JL, Simpson J, Spilker JA, Hock N, Miller E, Mitchell PH. Comprehensive Overview of Nursing and Interdisciplinary Care of the Acute Ischemic Stroke Patient: A Scientific Statement from the American Heart Association. Stroke . 2009;40:2911-2944
• Lindsay P, Furie KL, Davis SM, Donnan GA, Norrving B. World Stroke Organization global stroke services guidelines and action plan. Int J Stroke. 2014;9:4-13
• Powers WJ, Rabinstein AA, Ackerson T, Adeoye OM, Bambakidis NC, Becker K, Biller J, Brown M, Demaerschalk BM, Hoh B. Guidelines for the early management of patients with acute ischemic stroke: 2019 update to the 2018 guidelines for the early management of acute ischemic stroke: a guideline for healthcare professionals from the American Heart Association/American Stroke Association. Stroke. 2019;50:e344-e418
• Stroke Foundation. Clinical Guidelines for Stroke Management . 2019. https://informme.org.au/en/Guidelines/Clinical-Guidelines-for-Stroke-Management
• Boulanger J, Lindsay P, Gubitz G, Smith EE, Stotts G, Foley N, Bhogal S, Boyle K, Braun L, Goddard T, Heran MKS, Kanya-Forster N, Lang E, Lavoie P, McClelland M, O’Kelly C, Pageau P, Pettersen J, Purvis H, Butcher K. Canadian Stroke Best Practice Recommendations for Acute Stroke Management: Prehospital, Emergency Department, and Acute Inpatient Stroke Care, 6th Edition, Update 2018. Int J Stroke . 2018;13:174749301878661.
• Bowen A, James M, Young G. Royal College of Physicians 2016 National clinical guideline for stroke. 2016. https://www.rcplondon.ac.uk/guidelines-policy/stroke-guidelines
• Middleton S, Grimley R, Alexandrov AW. Triage, treatment, and transfer: evidence-based clinical practice recommendations and models of nursing care for the first 72 hours of admission to hospital for acute stroke. Stroke . 2015;46:e18-e25
• Stroke Unit Trialists’ Collaboration. Organised inpatient (stroke unit) care for stroke. Cochrane Database Syst. Rev. 2013;9:1-84. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6474318/
• Middleton S, Coughlan K, Mnatzaganian G, Low Choy N, Dale S, Jammali-Blasi A, Levi C, Grimshaw JM, Ward J, Cadilhac DA. Mortality reduction for fever, hyperglycemia, and swallowing nurse-initiated stroke intervention: QASC Trial (Quality in Acute Stroke Care) follow-up. Stroke. 2017;48:1331-1336
• Middleton S, McElduff P, Ward J, Grimshaw JM, Dale S, D'Este C, Drury P, Griffiths R, Cheung NW, Quinn C. Implementation of evidence-based treatment protocols to manage fever, hyperglycaemia, and swallowing dysfunction in acute stroke (QASC): a cluster randomised controlled trial. The Lancet . 2011;378:1699-1706
• Alexandrov AW, Palazzo P, Biby S, Doerr A, Dusenbury W, Young R, Lindstrom A, Grove M, Tsivgoulis G, Middleton S. Back to Basics: Adherence with Guidelines for Glucose and Temperature Control in an American Comprehensive Stroke Center Sample. J Neurosci Nurs. 2018;50:131-137
• Middleton S, McElduff P, Drury P, D’Este C, Cadilhac DA, Dale S, Grimshaw JM, Ward J, Quinn C, Cheung NW. Vital sign monitoring following stroke associated with 90-day independence: A secondary analysis of the QASC cluster randomized trial. Int J Nur. Stud. 2019;89:72-79
• Camicia M., Lutz BJ, Harvath T, Kim KK, Drake C, Joseph J G. Development of an instrument to assess stroke caregivers’ readiness for the transition home. Rehabil Nurs. 2020;5:287-298. doi: 10.1097/rnj.0000000000000204
• Camicia, M.E. Lutz, B.J., Joseph, J.G., Harvath, T.A., Drake, C.M., Theodore, B.R., & Kim, K.K. (2021) Psychometric properties of the preparedness assessment for the transition Home after stroke instrument. Rehabil Nurs . 2021. doi: 10.1097/RNJ.0000000000000310. Epub 2021 Jan 22
• Duncan P, Bushnell C, Sissine M, Coleman S, Lutz B, Johnson A, Radman M, Bettger JP, Zorowitz R, Stein J. Comprehensive Stroke care and outcomes: Time for a paradigm shift. Stroke. 2021;1:385-393. doi: 10.1161/STROKEAHA.120.029678. Epub 2020 Dec 22.

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• Open access
• Published: 15 April 2024

Dyslipidemia and associated factors among adult cardiac patients: a hospital-based comparative cross-sectional study

• Alemayehu Abera 2 ,
• Abebaw Worede 1 ,
• Agete Tadewos Hirigo 3 ,
• Rahel Alemayehu 4 &
• Sintayehu Ambachew 1  

European Journal of Medical Research volume  29 , Article number:  237 ( 2024 ) Cite this article

Metrics details

Atherosclerotic vascular diseases are a leading global cause of morbidity and mortality. Dyslipidemia, a major modifiable risk factor for cardiovascular disease, remains poorly understood among adult cardiac patients in in the study area. This study aims to determine the prevalence of dyslipidemia and identify associated factors in this population.

Hospital-based comparative cross-sectional study was conducted from May to August 2021. A total of 319 participants (153 cardiac cases, 166 healthy controls, aged ≥ 18) were included in the study. Socio-demographic, anthropometric, behavioral, and clinical data were collected using the WHO STEPS survey instrument through systematic sampling. Overnight fasting blood samples were obtained, and serum lipid profiles were analyzed using a COBAS 6000 analyzer. Data were analyzed with SPSS version 20.0, employing bivariable and multivariable logistic regression. Statistical significance was set at p < 0.05.

The overall prevalence of dyslipidemia, encompassing at least one lipid abnormality, was 80.3% among 256 participants. Among cardiac cases, the prevalence rates were as follows: 72.5% for low HDL-cholesterol, 12.4% for hypercholesterolemia, 9.8% for elevated LDL-cholesterol, and 30.1% for hypertriglyceridemia. In controls, corresponding rates were 69.9%, 9.6%, 7.2%, and 32.5%. Significant factors linked to low HDL- cholesterol were female gender (AOR: 2.8, 95% CI 1.7–4.7) and obesity (AOR: 2.8, 95% CI 1.1–7.5). Abdominal obesity was associated with hypercholesterolemia (AOR: 5.2, 95% CI 1.9–14.3) and elevated LDL-cholesterol (AOR: 5.1, 95% CI 1.6–15.8). High blood pressure, overweight, and abdominal obesity were significantly linked to hypertriglyceridemia (p < 0.05).

Dyslipidemia was high among the study participants. Overweight, obesity, central adiposity, and high blood pressure were significantly associated with dyslipidemia in cardiac patients. This alarms the need for lipid profile assessment for patients periodically, with treatment follow-up to monitor any rising patterns and cardiovascular-related risks.

Introduction

Dyslipidemia is a condition that arises as a result of abnormalities in plasma lipids. These abnormalities could be quantitative, qualitative, or both. Quantitatively, dyslipidemia is due to elevated plasma total cholesterol (TC), elevated low-density lipoprotein cholesterol (LDL-c), elevated triglycerides (TG), and reduced high-density lipoprotein cholesterol (HDL-c) levels, occurring singly or in combinations. Qualitatively, dyslipidemia implies changes in the composition of LDL-c, which includes small dense LDL-c, increased TG content, or increased electronegativity of LDL-c [ 1 ].

Lipid abnormalities play a central role in the pathogenesis of atherosclerotic cardiovascular disease (ASCVD). Lipoproteins consist of unesterified and esterified cholesterol, phospholipids, triglycerides, and apolipoproteins at variable ratios, densities, and sizes. Their role is to transport lipids in the blood [ 2 , 3 ]. Based on their buoyant density, lipoproteins are divided into 6 major classes. Chylomicrons, very low-density lipoproteins (VLDL), intermediate-density lipoproteins (IDL), LDL-c and HDL-c, and Lp(a). LDL-c and HDL-c are known as “bad” and “good” cholesterol, respectively. Thus, elevated levels of LDL-c are linked to premature development of atherosclerosis and coronary heart disease; while low levels of HDL-c are associated with an increased risk of ASCVD [ 2 , 4 ]. HDL-c has anti-oxidative, antithrombotic, and anti-inflammatory properties [ 5 ]. VLDL-c and Tg levels are a major determinant of the LDL-c subfraction profile. As plasma TG levels rise, the profile shifts from a predominance of large particles to small dense LDL-c [ 6 ]. This is due to an elevated TGs concentration which is associated with higher concentrations of atherogenic small dense LDL-c particles and lower HDL-c concentrations [ 7 ].

Hyperlipidemia stands as a robust and firmly established risk factor for cardiovascular disease (CVD). Substantiating this, a Mendelian randomization study reinforces the pivotal causal role of atherogenic lipoproteins, specifically LDL-c, in the development of ASCVD [ 3 ]. Hypercholesterolemia is identified as the underlying cause for one-third of ischemic heart diseases (IHD) globally. It is estimated that approximately 2.6 million deaths, constituting 4.5% of the total global mortality, can be attributed to hypercholesterolemia [ 8 ]. Within a population, hypercholesterolemia is recognized as the primary factor contributing to the development of atherosclerosis and subsequent coronary heart disease (CHD) [ 9 ]. Studies showed that many factors affect the amount of lipid levels in plasma [ 9 , 10 ]. These could be lifestyle variables, environmental and genetic factors. More commonly, dyslipidemia happens in an acquired condition [ 11 , 12 ]. For instance, a study conducted by Shephard RJ et al. [ 13 ], showed that cigarette smoking bears an independent relationship with triglycerides, HDL-c, and LDL-c.

An epidemiological study by Tesfay F [ 14 ], revealed wide disparities in the distribution of main risk factors for CVD such as hypertension, tobacco smoking, alcohol consumption, insufficient intake of fruit and vegetables, obesity, and physically inactivity. These risk factors mainly cause endothelial dysfunction that is associated with the development of inflammation of the arterial wall that damages coronary blood vessels resulting in atherosclerosis [ 15 ]. Risk factors: dyslipidemia, hypertension, smoking, obesity, and diabetes mellitus are responsible across the world population for 80% of the CVD burden [ 16 ].

The burden of CVD in America, China, Europe, and Africa, remain a significant health challenge. Despite improvements in some areas, factors like obesity and sedentary lifestyles contribute to persistently high CVD prevalence. China faces rising CVD rates due to urbanization. While Europe grapples with healthcare disparities. In Africa, urbanization and lifestyle changes drive a growing CVD burden [ 17 , 18 ].

LDL-c promotes atherosclerosis through complex inflammatory and immune mechanisms leading to lipid dysregulation. A study has indisputably shown that LDL-c is causal in the atherosclerosis process [ 19 ], and the size of the total atherosclerotic plaque burden is determined by both the concentration of circulating LDL-c and by the total duration of exposure to these lipoproteins. As time goes eventually, the enlarging atherosclerotic plaque burden reaches a critical mass beyond which the disruption of a plaque can lead to an overlying thrombus that acutely obstructs blood flow resulting in unstable angina, myocardial infarction, or death [ 20 ]. Elevated levels of inflammation-related proteins, including fibrinogen, high-sensitivity C-reactive protein (hsCRP), and interleukin-6 (IL-6), are observed in individuals with atherosclerosis [ 4 ].

The escalation of cardiovascular disorders is significantly influenced by the epidemiologic transition, marked by the global trends of increasing urbanization and shifts in lifestyle factors occurring universally [ 21 ]. The magnitude of CVD is increasing in low and middle-income countries (LMICs) and causing a big public health catastrophe [ 22 ].

Ethiopia is emerging as one of the swiftest-growing economies in Africa, currently experiencing an epidemiologic transition. The rapid urbanization is drawing a substantial population migration from rural to urban areas [ 14 , 23 ].

The nation has brought about alterations in individuals' lifestyles, encompassing changes in physical activity, nutrition, and behaviors such as smoking, alcohol consumption, and khat use [ 14 ].

Lipid-lowering drugs have demonstrated a significant reduction in the risk of myocardial infarction [ 24 ], Therefore, the identification of cardiac patients and understanding the pattern of dyslipidemia in this population is crucial for successful management [ 25 ]. At least a 50% reduction of LDL-c levels from baseline is recommended to prevent CVD, [ 26 ].

Enhanced comprehension of the factors influencing dyslipidemia provides valuable opportunities to implement impactful secondary prevention strategies, leading to a notable reduction in dyslipidemia and, consequently, a decline in ASCVD. However, the prevalence of dyslipidemia appears to be on the rise in numerous developing countries [ 27 ] . Besides, dyslipidemia in cardiac patients in the Ethiopian population has not been well characterized. Therefore, the main aim of this study was to determine the prevalence of dyslipidemia and associated factors among adult cardiac patients.

Materials and methods

Study area, design, and period.

This study was conducted at Hawassa University Comprehensive Specialized Hospital, Chronic Diseases Clinic. Hawassa is the capital city of the Sidama region and is located 275 km from Addis Ababa.. The Hospital is one of the biggest hospitals in Sidama regional state that provides health services for more than 12 million people and acts as the referral center for other district hospitals. Hence, facility-based comparative cross-sectional study was conducted from May to August 2021 to assess dyslipidemia and associated factors among cardiac patients.

Sample size and sampling techniques

The determination of the sample size relied on assessing the difference between proportions, taking into account specific parameters, including a confidence interval (CI) of 95%, a ratio of cardiac patients to healthy controls set at 1:1, and a power of 90%.The sample size was determined, considering the prevalence rates of elevated LDL-c concentrations. Specifically, a prevalence of 14.1% from the National NCDs survey of Ethiopia was considered for the healthy control group [ 28 ], while a prevalence of 3.8% reported among patients with cardiac disease in Cameroon was utilized for the exposed group [ 29 ].

The sample size for each group was calculated as follows:

where, = α type I error [level of significance, which is 1–0.95 = 5%], = β type II error [1–0.9 = 10%], [power of the study, 1-β = 90%], Power = the probability of getting a significant result, f[α, β] = 10.5 when the power is 90% and CI of 95%, P 1  = proportion of dyslipidaemia in cardiac group [0.038], P 2  = proportion of dyslipidaemia in non-exposed group [0.141], q 1  = 1-P 1 (0.962) and q 2  = 1-P 2 (0.859). Including a 5% non-response rate, the final sample size was 328 [164 cardiac cases and 164 normal controls]. From the 328 calculated sample sizes, a 97.3% response rate was obtained. Systematic sampling method was carried out to select the study participants.

Data collection

A structured questionnaire was developed to collect data, customizing the World Health Organization (WHO) STEPS questionnaire to accommodate local needs [ 26 ]. Socio-demographic characteristics, factors associated with lifestyle, anthropometric measurements, and clinical parameters/comorbidities were collected using this questionnaire. Socio-demographic and behavioral information was gathered by trained clinical nurses working in the cardiac clinic. Before sample collection, a brief explanation of the study’s aim was provided to all participants.

Height was measured using a stadiometer, and weight was recorded using an electronic digital body balance scale with patients barefoot and wearing light clothes. Waist circumference (WC) was measured at the midpoint between the iliac crest and the lower rib. Men with WC ≥ 102 cm or women with WC ≥ 88 cm were defined as having abdominal obesity. Body mass index (BMI) was calculated as weight divided by height squared (kg/m^2). Underweight, normal weight, overweight, and obese were classified as BMI < 18.5, 18.5–24.9, 25–29.9, and ≥ 30, respectively.

Blood pressure was measured using an analog sphygmomanometer and stethoscope. Elevated blood pressure was considered present when the systolic blood pressure was ≥ 130 mmHg and/or diastolic blood pressure was ≥ 85 mmHg or when there was current use of blood pressure-lowering medication.

Sample collection & laboratory diagnosis

Laboratory technologists collected blood samples by strictly following laboratory standard operational procedures (SOPs). Approximately 5 ml of whole blood was drawn from each participant using a plain vacutainer tube after an overnight fasting period of 8–12 h. Subsequently, the collected samples were allowed to stand for 30 min to facilitate clot formation. The clotted blood samples were then centrifuged at 4000 rpm for 5 min to obtain serum. In cases where a delay in analysis was expected, serum samples were stored at – 40 ºC until analysis. An enzymatic colorimetric technique was utilized to determine TC and TG levels, while a direct homogeneous method was applied for HDL-c and LDL-c determination using the COBAS 6000 analyzer with c501 (Roche Diagnostics GmbH, Mannheim, Germany).

Data management and quality control

The questionnaire was prepared in English version and translated to the local Amharic language. The questionnaire was tested at Adare General Hospital which is located 5 km away from the study site with 18 confirmed cardiac patients and the necessary correction was done after the pre-test feedback. Appropriate training was given for data collectors, and socio-demographic, behavioral, and anthropometrics data were collected by two trained nurses under the supervision of the principal investigator. All collected data were checked for consistency and completeness daily by the principal investigator. The pre-analytical, analytical, and post-analytical processes were maintained by following laboratory standards. The proper functioning of the instruments, laboratory reagents, and technical performance was checked daily by using quality control samples before running patient samples as well as along with patient samples. Quality control results were interpreted using Westgard rules and appropriate remedies were taken in case of unacceptable quality control results.

Data analysis

The collected data were checked for completeness, sorted, coded, and entered into the statistical software Epi-Info version 7.2.1.0, and then it was exported and analyzed by SPSS version 20. The results were presented as frequency and percentage for categorical variables, and means and standard deviation for continuous quantitative variables. Normality of the data was checked graphically via visual plots like the Q-Q plot, the statistical methods like the Kolmogorov–Smirnov normality test, and the Shapiro–Wilk normality test.

The chi-square and independent t-test were used to report the data distribution differences. Pearson’s correlation coefficient was applied to determine the relationship of TC, HDL-c, LDL-c, and TGs with different variables. Bivariate and multivariate logistic regression models were used to assess the statistically significant association between independent and dependent variables. A p-value less than 0.05 was deemed statistically significant with a confidence level of 95%0.3

General characteristics of the study participants

A total of 319 [155(48.6%) females and 164(51.4%) males] were enrolled in this study and a 97.8% response rate was obtained. The average age of the study subjects was 44 years, with a standard deviation of 17.8. The age range spanned from 18 to 90 years. Two groups were studied: the first group, 153[64(41.8%) males, 89(58.2%) females] were cardiac patients; while the second group, 166[100 (60.2%) males and 66 (39.8%) females] were non-cardiac patients (controls). Most of the study participants, 58% (n = 188), 30.4% (n = 97), 78.1% (n = 249), and 29.8% (n = 95) were urban dwellers, unable to read and write, married, and housewife, respectively (Table  1 ).

Anthropometric, behavioral, and clinical characteristics of the study participants

The mean (± SD) of SBP, DBP, BMI, and WC of the study subjects were 124.2 (21.9), 76.1 (12.1), 23(5.2), and 91.8 (12.1), respectively. The mean SBP, DBP, and WC were significantly higher in cardiac patients when compared to controls (128.5 vs. 120.1, p = 0.001 for SBP; 77.6 vs. 74.6, p = 0.027 for DBP; 93.3 vs. 90.4, p = 0.029 for WC). In addition, mean BMI (Kg/m 2 ) was significantly higher in cardiac patients when compared to controls (24.4 vs.21.6, p < 0.0001). Overall, 17 (5.3%) and 34 (10.7%) of the study subjects had a history of smoking and alcoholism, while 10 (3.1%) and 20 (6.3%) were current smokers and had current alcoholism. Moreover, the history of hypertension, familial history of cardiac disease, and depression was significantly higher in cardiac patients when compared to controls (Table  2 ).

Pattern of lipid profiles among the study groups

The mean HDL-c was significantly lower in cardiac male patients when compared to cardiac female patients (33.0 vs. 37.6, p < 0.0001). However, the mean HDL-c was insignificantly lower in cardiac male patients when compared to controls (34.3 vs. 35.7, p > 0.05). In addition, mean TC and LDL-c were insignificantly higher in cardiac patients compared with controls (149.9 vs. 147.4, p = 0.61, and 84.8 vs.83.5, p = 0.73) respectively. The mean value of TC was 148.6 mg/dl both in men and women, and the mean value of HDL-c was as low as 32.6 mg/dllin men and 37.6 mg/dl in women, while the mean values of TG and LDL-c were 139.5 mg/dl and 84.1 mg/d in both men and women participants, respectively (Table  3 ).

Characteristics of dyslipidemia, anthropometric and blood pressure

Overall, 256 (80.3%) of the study participants had at least one type of lipid abnormality. This means 126 (39.5%) of the cardiac patients and 130 (40.8%) of the control group had at least one type of lipid abnormality (dyslipidemia).

Over all, dyslipidemia was significantly higher among males 139 (43.6%) when compared to females 117 (36.7%, p = 0.04). However, it was significantly higher in cardiac females when compared to cardiac males (43.8% vs. 38.6%, p = 0.007), respectively. The prevalence of hypercholesterolemia, high LDL-c levels, and low HDL-c levels were insignificantly higher in the cardiac group when compared with the control group. While hypertriglyceridemia and TC/HDL-c > 5 mg/dl were insignificantly higher among the control group compared to the cardiac group. In addition, BMI ≥ 25 kg/m 2 , SBP ≥ 130 mmHg, DBP ≥ 85 mmHg, and WC (≥ 88 for females & ≥ 102 for males) were significantly higher in cardiac patients compared to controls (Table  4 ). Moreover, overall 101(32%) of the study participants had at least 2 lipid profile abnormalities within a single individual according to NCEP ATP III criteria. Four lipid profile abnormality in a single individual was significantly higher in the cardiac group (11.6%, n = 37) compared to the control group (1.3%, n = 4).

Dyslipidemia and its associated factors

In the bivariate analysis of variables, being female (COR = 2.5; 95% CI 1.2–5.4), having SBP ≥ 130 mmHg (COR = 2.1; 95% CI 1.1–4.3), and having WC ≥ 88 cm for females & ≥ 102 cm for males (COR = 5.2 95% CI 2.4–11.6), were found to be significantly associated with the hypercholesterolemia. However, on the multivariate analysis, performing light to moderate exercise (AOR = 0.18; 95%CI 0.37–0.85) and having WC ≥ 88 cm for females & ≥ 102 cm for males (AOR = 5.2; 95%CI 1.9–14.3) were significantly associated with the hypercholesterolemia.

Besides, being female (COR = 2.6; 95% CI 1.6–4.3) was found to be significantly associated with HDL-c < 40 mg/dl. However, on the multivariate analysis, female (AOR = 2.8; 95%CI 1.7–4.7) and obesity (AOR = 2.8; 95%CI 1.1–7.5) were significantly associated with HDL-c < 40 mg/dl. Moreover, WC ≥ 88 cm for females & ≥ 102 cm for males, and low to moderate physical activity were significantly associated with LDL-c ≥ 130 mg/dl, while high DBP, overweight, and abnormal WC were significantly associated with hypertriglyceridemia (Table  5 ).

Correlation of dyslipidemia in relation to different variables among cardiac patients

Pearson correlation analysis showed that TC, LDL-c, HDL-c, and TG levels were inversely correlated with duration since the diagnosis of cardiac disease and treatment started. In addition, DPB and WC were positively significantly correlated with TC, LDL-c, and TG.

Pearson’s correlation analysis showed that both serum TC and LDL-c levels were significantly correlated with heart rate (r = 0.275, p < 0.001 for TC) (r = 0.265, p < 0.001 for LDL-c) while serum TG levels were significantly correlated with both BMI and HPC (r = 0.312, p < 0.0001 for BMI) (r = 0.333, p < 0.0001 for HPC), respectively.

Serum TC, LDL-c, and TG levels were significantly correlated with both WC and DBP [(r = 0.167, p = 0.04), (r = 0.163, p < 0.04), (r = 0.355, p < 0.0001) for WC]; [(r = 0.192, p = 0.02),( r = 0.169, p = 0.04), (r = 0.236, p = 0.003) for DPB] respectively(Table  6 ).

Dyslipidemia is one of the important risk factors for CVD. This study indicated that overall 80.3% (95% CI 75.9–84.6) of the participants had at least one type of lipid abnormality. The most frequently encountered lipid abnormality was a low level of HDL-c (71.2%), followed by hypertriglyceridemia (31.3%). The result of dyslipidemia in the current study was in line with the study conducted in Egypt among CAD patients (80%) [ 30 ]. However, this finding was lower than the study conducted in Iran (85.4%) [ 31 ]. On the contrary, the finding of this study was higher than other studies conducted in Cameroon (26%) [ 29 ] and in Ethiopia (66.7%) [ 32 ]. The variation in reports might be due to differences in lifestyles such as unhealthy diet and physical inactivity, mental stress due to economic, social, and cultural factors, coronary-prone behavior, genetics, proinflammatory conditions, and diagnostic criteria or differences in cutoff values.

Data from several studies showed that low HDL-c is not uncommon in the general population [ 33 , 34 , 35 ]. In the current study, the prevalence of a low level of HDL-c was 71.2%. Similarly, low levels of HDL-c occurred in Ethiopia among 68.7% of study participants in a community-based survey [ 28 ]. However, the current result was high compared to a study conducted among Peru Migrants (36.5%) [ 36 ]. Low levels of HDL-c are a strong predictor of the occurrence and reoccurrence of myocardial infarction and stroke [ 37 , 38 ]. This study found that compared with cardiac females, cardiac males had a higher level of low HDL-c (87.5% vs. 61.8%, p < 0.0001). The finding of this study agrees with the Egyptian study [ 30 ]. Contrary to this study, in a community-based survey of Ethiopia, low levels of HDL-c in females (73.5%) had been found compared to males (64.8%) [ 28 ]. Additionally, the finding was not in line with Cameroon [ 29 ] and Iran studies [ 31 ] in which elevated low levels of HDL-c were found in females. The variation could be genetic factors between populations and age differences between the studies. In addition, obesity and cigarette smoking were higher in men than females. HDL-c exerts its cardio-protective effects mainly via its role in the reverse cholesterol transport pathway by promoting the removal of cholesterol from peripheral cells and preventing atherosclerosis [ 39 ]. More recent data have confirmed that individuals with lower HDL-c levels (< 30.1 mg/dl) were independently associated with a higher risk of CVD, cancer, and other mortality compared with individuals in the reference ranges of HDL-c levels [ 40 ].

In this study, the prevalence of raised TG was 30.1%. This finding was almost comparable with the report from Malaysia among CHD patients (31%) [ 41 ] and Iran (33.9%) [ 31 ], whereas it was higher than the study conducted in Cameroon (18.9%) [ 29 ]. However, this finding was lower than the study conducted in Egypt (45%) [ 30 ], Pakistan (66%) [ 42 ], and India (63%) [ 43 ]. These differences might be due to differences in physical inactivity, genetic factors, diet, and lifestyle of the study participants. Triglyceride concentration has strong associations with ASCVD risk [ 44 ]. Atherogenic dyslipidemia may play a central role in endothelial dysfunction, which is important for the pathogenesis of atherosclerosis, insulin resistance, as well hypertension. The clinical benefit of both triglycerides and LDL-c lowering might be related to the absolute reduction in VLDL and LDL particles, respectively [ 45 ].

In this study, TC and LDL-c were inversely and significantly correlated with the duration of cardiac treatment. This might be due to the therapeutic approach which was used to lower blood pressure, dietary modification, cessation of smoking, and alcoholism and have an impact to reduce the risk of dyslipidemia. Modifying risk factors could potentially reduce the risk of myocardial infarction by more than 80% to 90% [ 46 ].

The prevalence of hypercholesterolemia (12.4%) and raised LDL-c (9.8%) found in this study were lower than the studies conducted among CVD patients in Iran (38.0% and 32.3%) [ 31 ], and CHD patients in Malaysia (51% and 15.5%) [ 41 ], CHD patients in Egypt (59% and 55%) [ 30 ], and Pakistan (39.3% and 39.7%) [ 47 ]. However, it was lower than the Cameroon study (3.4% and 3.8%) [ 29 ]. The observed difference may be due to the difference in socio-demographics, individual lifestyle, genetic variation, study design, and sample size.

The LDL-c/HDL-c ratio might be a more important risk factor than LDL-c itself in CAD patients [ 48 ]. LDL-c/HDL-c ratio predicts cardiovascular events and the progression of coronary artery disease [ 48 , 49 ]. Nicholls et al. have demonstrated that LDL/HDL-cholesterol ratio > 2.0 was related to plaque progression while that < 1.5 was significantly related to plaque regression [ 49 ]. The study revealed that 27% of cardiac patients had elevated LDL-c/HDL-c ratios, which make them vulnerable to an increased risk of CHD major adverse cardiovascular events.

The present study depicted that TC and LDL-c were significantly correlated with heart rate and DBP in cardiac patients. As the age goes older, there is a natural tendency for the blood pressure to rise, which could be because of endothelial atherosclerotic changes which increase the stiffness of the arteries in the blood vessel [ 50 ].

In this study, low serum HDL-c was significantly associated with the female sex. A variety of data suggest that premenopausal women have a higher HDL-c level than do menopause [ 51 , 52 ]. Which noted an adverse effect on serum lipid levels in postmenopausal women (> 50 years) occurred due to decreased levels of estrogen production after menopause [ 53 ]. Estrogens significantly inhibit LDL transcytosis by down-regulating the expression of endothelial scavenger receptor class B type I [ 54 ]. This explains why physiological levels of estrogen reduce LDL transcytosis in arterial endothelial cells of females. This finding offers one explanation why women have a lower risk than men of ASCVD before menopause [ 55 ].

In this study, hypertriglyceridemia was significantly associated with DBP. Patients with DBP ≥ 85 mmHg were 1.9 times more likely to develop hypertriglyceridemia compared with normal DBP. This finding was similar to one study in young Egyptian hypertensive CAD patients [ 30 ]. The prevalence of DBP was higher in cardiac patients compared to controls (28.1% vs. 15.7%, p = 0.001). This was consistent with a study conducted on CVD patients in Iran [ 31 ] and CHD patients of Spain [ 56 ]. Hypertriglyceridemia can lead to the development of atherosclerosis by several mechanisms. Low HDL-C levels are commonly escorted by elevated TG levels, and the combination appears to be the most severe combination for hastening vascular damage. The formation of small dense LDL is favored when plasma TG levels exceed 150 mg/dl [ 57 ], due to VLDL overproduction resulting in increased exchange of HDL cholesteryl esters for TGs. Cholesteryl ester depletes small dense LDL-c particles that are taken up by arterial wall macrophages causing atherosclerosis. Triglyceride-rich lipoproteins not only augment endothelial dysfunction but also facilitate monocyte infiltration into the arterial wall, and triglyceride-enriched HDL particles exhibit reduced cholesterol efflux capacity [ 7 , 58 ].

Obesity was found in 16.3% of cardiac patients. This was lower than CHD patients in Saudi Arabia (58.8%) [ 59 ], Pakistan (45.2%) [ 42 ], and the CVD patients of Cameroon (27.9%) [ 29 ]. Overweight and obesity combined were more prevalent in cardiac patients than in the control group (41.8% in cardiac and 18.2% in the control group; p < 0.0001). The observed overweight and/or obesity might be due to a lack of physical activity, lifestyle changes, and dietary patterns such as a higher intake of fat and reduced fiber intake. The rapid development of obesity will undoubtedly accelerate the prevalence of dyslipidemia. People who were obese have been linked to many different health conditions, including CVD, arterial hypertension, type 2 diabetes mellitus, some forms of cancer, and abnormalities of liver function [ 60 , 61 ].

Cardiac patients who were overweight [AOR = 2; 95% CI (1.10–3.8); p < 0.05)], abdominal obesity [AOR = 2.0; 95% CI (1.2–3.5), p < 0.01], were 2 times more likely to develop hypertriglyceridemia than their counterparts. Pearson correlation analysis also showed that both BMI and WC positively correlated with triglyceride concentration (r = 0.312, p < 0.0001 for BMI) and (r = 0.355 p < 0.0001 for WC). This indicated that the risk of a raised level of TG consistently increased with BMI (25–29.9 kg/dl) and WC. Females had a significantly higher rate of abdominal obesity and overweight when compared to males (62.9% vs. 29.7%, p < 0.0001) and (33.7% vs. 14.1%, p = 0.01), respectively. Overweight and abdominal obesity are independent risk factors for CVD [ 62 ]. The development of obesity leads to insulin resistance and it is a major underlying risk factor in the pathogenesis of both dyslipidemia and hypertension [ 60 , 62 ].

The present study showed that a low level of serum HDL-c was significantly associated with obesity [AOR = 2.8; 95% CI (1.1–7.5); p < 0.05]. After adjusting for other potential confounding variables, the odds ratio for low HDL-c among obese individuals was increased by 2.8 times the risk of developing a low level of HDL-c. The dyslipidemia of insulin resistance is characterized by elevated levels of TGs, low HDL-c, and small dense LDL particles [ 62 ]. Obesity is an important independent risk factor for low HDL-cholesterol, suggesting that this could add to other existing forces responsible for the rising burden of cardiovascular risk factors.

In the current study, increased WC was an independent predictor of hypercholesterolemia and LDL-c [AOR = 5.2; 95% CI (1.9–14.3); p < 0.01] [AOR = 5.1; 95% CI (1.6–15.8); p < 0.01], respectively. Females had a significantly higher rate of abdominal obesity compared to males (62.9% vs. 29.7%, p < 0.0001). An increased WC is associated with more subcutaneous fat. Visceral fat is metabolically active; the oxidative process perpetuates an inflammatory response in the subendothelial space, as activated cells secrete pro-inflammatory molecules, including free fatty acids, adiponectin, and adipocytokines such as TNF-α and IL-6, which cause pro-inflammatory damage and reactive oxygen species production resulting in disease states like hypertension [ 63 ]. High levels of free fatty acids and inflammatory cytokines contribute to the alteration of the signaling to insulin resistance that is present in many patients with overweight or obesity. Insulin resistance and atherosclerosis are also strongly linked to excess visceral adipose tissue [ 64 ].

In this study, TC and LDL-c dyslipidemia were inversely and significantly associated with a sedentary lifestyle [AOR = 0.12; 95% CI (0.01–0.67); p < 0.05; AOR = 0.06; 95% CI (0.01–0.3); p < 0.01], respectively. A sedentary lifestyle came up with the protective effect in this study. This might be due to the reluctance to provide the correct information, the nature of the data that relies on self-reporting, which is highly prone to response bias. Other possible reasons may be a smaller number of participants in every category which may hamper the statistical analysis. A low level of physical activity has been noted to be a significant risk factor for CHD. The protective effect of physical activity was reported in the INTERHEART study [ 65 ].

In conclusion, regardless of the study participants, the overall prevalence of dyslipidemia in the current study was high. The most frequently encountered lipid abnormality was a low level of HDL-c followed by hypertriglyceridemia. There was no observed statistical difference in most forms of lipid abnormality between the cardiac and healthy control groups. Obesity, overweight, abdominal obesity, increased DBP, and being female were significantly associated with an increased risk of dyslipidemia.

Hence, it is essential to regularly screen for and manage lipid abnormalities to enhance the overall health and well-being of the patient. Besides, health education should be provided to improve awareness about lipid abnormalities and associated risk factors for preventive purposes.

Availability of data and materials

The data is available on the primary and corresponding author up on request.

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Abera, A., Worede, A., Hirigo, A.T. et al. Dyslipidemia and associated factors among adult cardiac patients: a hospital-based comparative cross-sectional study. Eur J Med Res 29 , 237 (2024). https://doi.org/10.1186/s40001-024-01802-x

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DOI : https://doi.org/10.1186/s40001-024-01802-x

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Education of the Patients Living with Heart Disease

Elvana podvorica.

1 Faculty of Medical Technical Sciences, Department of Nursing. Tirana

Tefik Bekteshi

2 Department of Cardiology, Clinic of Internal Medicine, University Clinical Center of Kosovo, Pristina

3 College Rezonanca-Department of Nursing, Pristina, Kosovo

Introduction:

Patient education can be defined as the process of improving knowledge and skills in order to influence the attitudes and behaviour required to maintain or improve health or health style.

Education of the patients living with heart disease from ambulatory nurse education for the effectiveness on awareness on life style.

A quasi experimental study was conducted in Specialist Cardiology Ambulance D&D in Pristina among 100 patients. A complete clinical and laboratory measurements before and after the process of patient education (at 30, 60 and 90 days) were performed. The clinical outcome was nutrition, body mass index, blood pressure, lipid, diabetic profile and physical activity. The pre-post tested (validity, reliability and pilot testing) structured questionnaire were used for data collection.

All patients underwent education sessions by an experienced education nurse on 30, 60 and 90 days. At 90 days follow up, the BMI was decreased: Pre-education (29.01±5.46), Post-education (27.72±4.71), t- 5.999 p<0.0001, glycaemic level Pre-education (6.50±2.15) and Post-education (6.02±1.63), t- 4.157, p<0.0001 was decreased, HbA1c in Pre-education (6.23±2.06) and Post-education (5.72±1.44) t- 4.036 p<0.0001 respectively. The lipid profile was also changed at the 90 days follow-up: cholesterol, triglyceride and LDL-C were decreased (p<0.0001 for all), whereas HDL-C was increased (p<0.0001), by educational program at 90 days follow up. Whereas, blood pressure remains unchanged.

Conclusion:

Heart disease management programme where patient’s education is an important component, have been shown to be effective in increasing knowledge, self-care and self-management patients living with heart disease.

1. BACKGROUND

Cardiac disease specifically heart failure is a major and growing health problem in our country and is the most common Medicare Diagnosis-Related Grouping. Heart Disease (HD) is primarily a condition found in elderly people. The number of deaths associated with HD has been steadily increasing despite advances in care, in part related to our aging population, but also because of better treatment and survival of patients with acute myocardial infraction and heart disease earlier in life ( 1 ).

Heart failure (HF) is a clinical syndrome, which is becoming a major public health problem in recent decades, due to its increasing prevalence, especially in the developed countries ( 2 , 3 ).

The life expectancy is prolonged in HF patients, mainly due to the improved pharmacological and non-pharmacological treatment ( 4 ).

More than 2 decades ago, McGinnis and Foege ( 5 ) and McGinnis and colleagues ( 6 ) suggested that the nation’s major health policies should move to emphasize reducing unhealthy lifestyles. A meta-analysis ( 7 ) of 15 studies including 531 804 participants from 17 countries with a mean follow-up of 13.24 years suggested that ≈ 60% of premature deaths could be attributed to unhealthy lifestyle factors, including smoking, excessive alcohol consumption, physical inactivity, poor diet, and obesity. A healthy lifestyle was associated with an estimated increase of 7.4 to 17.9 years in life expectancy in Japan, ( 10 ) the United Kingdom, ( 8 ) Canada, ( 9 ) Denmark, ( 10 ) Norway, ( 10 ) and Germany ( 10 , 11 , 12 ).

Cardiac disease can cause some complications, could reduce physical and social activities and as the results decreased quality of life [ 13 ].

Self-care is a crucial task for controlling the negative consequences of the illness, by which behavioural modifications are targeted including, health education knowledge and attitude toward patients affected by HF ( 14 ).

Approximately, half of the patients with HF do not follow the treatment recommendations, and this may lead to readmission to the hospitals ( 15 ).

Increasing patients’ knowledge in improving modifiable factors such as: physical activity, nutrition, monitoring of BMI, glycemia, cholesterol, triglycerides, HDL and LDL are factors that can improve the condition of the patient living with heart disease and increase knowledge of patients that lifestyle change consists of increasing self-care and self-management of the disease both of which improve quality of life, reduce rehospitalizations, and minimize eventual complications. Self-management of heart failure is complex and difficult for the HF patients, because they should be obliged to monitor the symptoms and observe drug regimens, and identify any changes in their health status and evaluate them in order to select the appropriate treatment option and evaluate its effectiveness.

Study population

The population in the study refers to all the treated patients in Speciality Ordinance of the Cardiac Disease D&D in the Pristina. The sample was 100 patients who consented to the study with heart disease with median age 60.98 (< 65) years old, 52% were male. A complete clinical and laboratory measurements before and after education process took place (at 30, 60 and 90 days) were performed between October to December 2019.

Patients that had clinical evidence for other non-cardiac disease, which may cause deterioration of physical activity (e.g., rheumatic disease, limited physical activity, chronic obstructive pulmonary disease, anaemia, recent stroke and advanced chronic renal failure) were excluded from the study. The study was approved by the local Ethics Committee and patients gave written informed consent to participate.

Data collection

Detailed history and clinical assessment were obtained in all study patients. The primary outcomes of the study were: change in nutrition, lifestyle living with heart disease, physical activity, body mass index (BMI), blood pressure (BP), lipid and diabetic profile by education program. The session education was focused mainly in the assessment of patients’ knowledge of lifestyle, self-management and self-care of risk factors such as, arterial hypertension, smoking, diabetes mellitus, dyslipidaemia and physical activity.

The process of patient education

The process of patients can be described in four steps. The first step includes and assessment of the patient’s previous and current knowledge, misconceptions, learning abilities, learning styles, attitudes and motivation.

Educational sessions were developed and were provided to nurses on a medical telemetry unit. Educational methods were Face-to-Face education sessions, printed materials and pictures, which were provided to the participants.

Continuous evaluation of patient’s needs and goals provides the basis for further education. In addition to the individual evaluation, a more structured evaluation of the effects of patient education provides valuable information’s about the quality of life and lifestyle in living with heart disease.

Follow-up and outcomes

The patient’s education was performed at 30, 60 and 90 days. The primary outcomes were nutrition, lifestyle, physical activity, BMI, BP, lipid and diabetic profile, after the process of patient education.

Statistical analysis

Values are expressed as mean ± SD for continuous variables and percentage for dichotomous data. Continuous data was compared with two-tailed Student t - test and discrete data with Chi-square test. Quantitative data were analysed through the SPSS statistical program.

Demographics data of study patients are presented in ( Table 1 ). Most of respondents were 52% Male, 59% were > 65 years old, 87% married, 61% were with under diploma, most of them lived in the urban area 90%, and according Job status 36% were houswife.

All patients underwent educational sessions (100), all of whom were diagnosed with cardiovascular disease. 37% of them were with Cardiomyopathy, 10% were with State after PCI-CABG, 7% with Valvular heart disease, 4% with atrial fibrillation, most of them from 40% were more than two cardiovascular disease, and 2% were heart failure, ( Figure 1 ).

Sex between BMI of the sample was presented at Figure 2 . Analysing the gender of the patients and BMI the level of obesity rate dominates the female gender with 21 (43.8%), as opposed to the male gender with 12 (23.1%) of them were obese.

All patients underwent education sessions by an experienced education nurse on 30, 60 and 90 days. At follow up 90 days, the BMI was decreased Pre-education (29.01±5.46), Post-education (27.72±4.71), t- 5.999 p<0.0001, glycaemic level Pre-education (6.50±2.15) and Post-education (6.02±1.63), t- 4.157, p<0.0001 was decreased, HbA1c in Pre-education (6.23±2.06) and Post-education (5.72±1.44) t- 4.036 p<0.0001 respectively. The lipid profile was also changed at the 90 days follow-up: cholesterol, triglyceride and LDL-C were decreased (p<0.0001 for all), whereas HDL-C was increased (p<0.0001), by educational program at 90 days follow up. Whereas, blood pressure remain unchanged ( Table 2 ).

The Clinical measurement data between patients pre-educational and post educational comparing according level: Educating patients to live with heart disease is essential. Increasing patients’ knowledge of lifestyle with special emphasis on the role of food, physical activity are direct factors that affect the quality of life in living with diseases. After analysing the obtained data of clinical measurements, we gained a low significance during the Pre-education measurements analysed with those After the educational sessions: food and nutrition are potential factors in improving the health condition as in: Pre-education patient health status (N–29) and Post-education (N–42) were without symptoms (P <0.00), SBP, DBP, Glycemia, HbA1C, Cholesterol, HDL, LDL, Triglycerides were improved after educational sessions ( Table 3 ).

Comparing Gender and Blood Pressure after data analysis, in female patients most of them were with Grade 1 (mild) hypertension 140-159 / 90-99 mmHg, N-17 (35.4%) compared to males with only N- 7 (13.5%) P <0.001 ( Table 4 ).

Knowledge about the Nutrition between patients pre educational and post educational: 100 patients who have been held educational sessions related to lifestyle in living with diseases, there is an increase in their knowledge in the second measurement (Post-education) with slight significance, patients emphasize the role of nutrition, the type of fats that they use every day, physical activity that with the improvement of these increases the quality of their life and minimizes rehospitalizations, increases self-care and confidence in self-care and self-management of the disease. (Self-care and self-management for the disease are two essential components that the nurse manages to implement in patients only through educational sessions) ( Table 5 ).

5. DISCUSSION

In this study we evaluate changes of metabolic profile by educational program in patients with cardiovascular disease. The main findings of our study were: a) BMI was decreased after patients education; b) The control of diabetes and lipid profile were improved after patients education; and c) Improved blood pressure of patients after educational sessions, d) Patients’ knowledge about the importance of nutrition in living with heart disease increased, e)100% of patients after their three-month education began to consume vegetable fat products, moving away from animal fat products.

Our finding regarding the role of nursing education in line with previous studies, the role of nursing education, for example: Some studies ( 16 , 17 ) have revealed the value of nursing practice in secondary prevention and disease management. Cardiac rehabilitation programs including nursing education exert a beneficial effect on patients’ quality of life, exercise capacity, lipid profile, body mass index, body weight, blood pressure, resting heart rate, survival rate, mortality rate and decreased myocardial infarction risk factors. The results of my research are consistent with the results of research by Zhao et al., ( 18 ): The results of this study showed the effectiveness of the program by showing that such programs help patients maintain a healthy lifestyle and thus control the factors of risk.

International scientific medical societies consider education programs as an effective measure for lifestyle modifications in patients with CHD ( 19 , 20 ). Brown et al., in a meta-analysis, did not find and hard evidence for a reduction in cardiovascular end points as a result of education programs for patients, but they did find evidence for an effective improvement in quality of life and cost reduction ( 21 ). In this paper, we analysed the general knowledge of patients living with heart disease, with a special emphasis on the way of nutrition, with a special emphasis on the use of fat, the type of fat they consume every day. These our findings are similar with previous studies, which suggested that poor quality diets are high in refined and added sugars, unhealthy fats and animal-source foods: and low in whole grains, fruits, vegetables, legumes, fish and nuts. They are often high in processed food products- typically packaged and often ready to consume – and light on whole foods and freshly-prepared dishes ( 22 , 23 , 24 ).

Both the American College of Cardiology/American Heart Association and the European Society of Cardiology recognise education as an important component of comprehensive cardiac rehabilitation programmes and give a Class I recommendation that patients with non-ST-elevation acute coronary syndromes (ACS) and individuals with very high cardiovascular disease risk, should be educated about appropriate cholesterol management, blood pressure, smoking cessation, and lifestyle management ( 25 , 26 , 27 ). Whilst these reviews have considered trials that have included education as a co-intervention, this review update specifically focuses on the impact of the educational component of cardiac rehabilitation for patients with HD.

6. CONCLUSION

The study found that the role of nursing education was crucial and that nursing education sessions results in increased knowledge of self-care of the disease and convincing patients to adhere to lifestyle modifications while achieving modification of modifiable factors that may be threatening in living with heart disease. Patients education is an important component in heart disease care and should be provided through effective and well-evaluated strategies. Otherwise, the education can be a waste of time, both for the patients and the health care professionals, since received education does not automatically mean that information is absorbed or retained and implementation in practice during the life. Patients with heart disease need education in order to adapt to their chronic condition and perform self-care and self-management behaviour. Patients with heart failure need education in order to adapt to their chronic condition and perform self-care behaviour.

Acknowledgments:

We thank all the patients who participated in this research for three months.

Author’s contribution:

EP, TB gave a substantial contribution to the conception and design of the work. EP, TB, MO gave a substantial contribution of data. EP, TB, MO, IK gave a substantial contribution to the acquisition, analysis, or interpretation of data for the work. EP, TB, MO, IK had a part in article preparing for drafting or revising it critically for important intellectual content. All authors gave final approval of the version to be published and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Conflicts of interest:

There are no conflicts of interest.

Financial support and sponsorship: