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Narrative’ synthesis’ refers to an approach to the systematic review and synthesis of findings from multiple studies that relies primarily on the use of words and text to summarise and explain the findings of the synthesis. Whilst narrative synthesis can involve the manipulation of statistical data, the defining characteristic is that it adopts a textual approach to the process of synthesis to ‘tell the story’ of the findings from the included studies. As used here ‘narrative synthesis’ refers to a process of synthesis that can be used in systematic reviews focusing on a wide range of questions, not only those relating to the effectiveness of a particular intervention. (Popay et al. 2006)

A systematic literature review and narrative synthesis on the risks of medical discharge letters for patients’ safety

Christine Maria Schwarz 1 ,
Magdalena Hoffmann ORCID: orcid.org/0000-0003-1668-4294 1 , 2 ,
Petra Schwarz 3 ,
Lars-Peter Kamolz 1 ,
Gernot Brunner 1 &
Gerald Sendlhofer 1 , 2

BMC Health Services Research volume 19 , Article number: 158 ( 2019 ) Cite this article

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The medical discharge letter is an important communication tool between hospitals and other healthcare providers. Despite its high status, it often does not meet the desired requirements in everyday clinical practice. Occurring risks create barriers for patients and doctors. This present review summarizes risks of the medical discharge letter.

The research question was answered with a systematic literature research and results were summarized narratively. A literature search in the databases PubMed and Cochrane Library for Studies between January 2008 and May 2018 was performed. Two authors reviewed the full texts of potentially relevant studies to determine eligibility for inclusion. Literature on possible risks associated with the medical discharge letter was discussed.

In total, 29 studies were included in this review. The major identified risk factors are the delayed sending of the discharge letter to doctors for further treatments, unintelligible (not patient-centered) medical discharge letters, low quality of the discharge letter, and lack of information as well as absence of training in writing medical discharge letters during medical education.

Conclusions

Multiple risks factors are associated with the medical discharge letter. There is a need for further research to improve the quality of the medical discharge letter to minimize risks and increase patients’ safety.

Peer Review reports

The medical discharge letter is an important communication medium between hospitals and general practitioners (GPs) and an important legal document for any queries from insurance carriers, health insurance companies, and lawyers [ 1 ]. Furthermore, the medical discharge letter is an important document for the patient itself.

A timely transmission of the letter, a clear documentation of findings, an adequate assessment of the disease as well as understandable recommendations for follow-up care are essential aspects of the medical discharge letter [ 2 ]. Despite this importance, medical discharge letters are often insufficient in content and form [ 3 ]. It is also remarkable that writing of medical discharge letters is often not a particular subject in the medical education [ 4 ]. Nevertheless, the medical discharge letter is an important medical document as it contains a summary of the patient’s hospital admission, diagnosis and therapy, information on the patient’s medical history, medication, as well as recommendations for continuity of treatment. A rapid transmission of essential findings and recommendations for further treatment is of great interest to the patient (as well as relatives and other persons that are involved in the patients’ caring) and their current and future physicians. In most acute care hospitals, patients receive a preliminary medical discharge letter (short discharge letter) with diagnoses and treatment recommendations on the day of discharge [ 5 ]. Unfortunately, though, the full hospital medical discharge letter, which is often received with great delay, is an area of constant conflict between GPs and hospital doctors [ 1 ]. Thus the medical discharge letter does not only represent a feature of process and outcome quality of a clinic, but also influences confidence building and binding of resident physicians to the hospital [ 6 ].

Beside the transmission of patients’ findings from physician to physician, the delivery of essential information to the patient is an underestimated purpose of the medical discharge letter [ 7 ]. The medical discharge letter is often characterized by a complex medical language that is often not understood by the patients. In recent years, patient-centered/patient-directed medical discharge letters are more in discussion [ 8 ]. Thus, the medical discharge letter points out risks for patients and physicians while simultaneously creating barriers between them.

A systematic review of the literature was undertaken to identify patient safety risks associated with the medical discharge letter.

Search strategy

A systematic literature search was conducted using the electronic databases PubMed and Cochrane Database. Additionally, we scanned the reference lists of selected articles (snowballing). The following search terms were used: “discharge summary AND risks”, “discharge summary AND risks AND patient safety” and “discharge letter AND risks” and “discharge letter AND risks AND patient safety”. We reviewed relevant titles and abstracts on English and German literature published between January 2008 and May 2018 and started the search at the beginning of February 2018 and finished it at the end of May 2018.

Eligibility criteria

In this systematic review, articles were included if the title and/or abstract indicated the report of results of original research studies using quantitative, qualitative, or mixed method approaches. Studies in paediatric settings or studies that do not handle possible risks of the medical discharge letter were excluded, as well as reports, commentaries and letters. Electronic citations, including available abstracts of all articles retrieved from the search, were screened by two authors to select reports for full-text review. Duplicates were removed from the initial search. Nevertheless, during the search of articles the selection, publication as well as language bias must be considered. Thereafter, full-texts of potentially relevant studies were reviewed to determine eligibility for inclusion. In the following Table 1 inclusion and exclusion criteria for the studies are listed. Afterwards, key outcomes and main results were summarized. Differences were resolved by consensus. Finally, a narrative synthesis of studies meeting the inclusion criteria was conducted. Reference management software MENDELEY (Version 1.19.3) was used to organise and store the literature.

Data extraction

The data extraction in form of a table was used to summarize study results. The two authors extracted the data relating to author, country, year, study design, and outcome measure as well as potential risk factors to patient safety directly into a pre-formatted data collection form. After data extraction, the literature was discussed and synthesized into themes. The evaluation of the single studies was done using checklists [STROBE (combined) and the Cochrane Data collection form for intervention reviews (RCTs and non-RCTs)]. Meta-analysis was not considered appropriate for this body of literature because of the wide variability of studies in relation to research design, study population, types of interventions and outcomes.

Then a narrative synthesis was performed to synthesize the findings of the different studies. Because of the range of very different studies that were included in this systematic review, we have decided that a narrative synthesis constitutes the best instrument to synthesise the findings of the studies. First, a preliminary synthesis was undertaken in form of a thematic analysis involving searching of studies, listing and presenting results in tabular form. Then the results were discussed again and structured into themes. Afterwards, summarizing of included studies in a narrative synthesis within a framework was performed by one author.

This framework consisted of the following factors: the individuals and the environment involved in the studies (doctors, hospitals), the tools and technology (such as discharge letter delivery systems), the content of the medical discharge letter (such as missing content, quality of content), the accuracy and timeliness of transfer. These themes were discussed in relation to potential risks for patient’s safety. All articles that were included in this review were published before. The framework of this study was chosen following a previously published systematic review dealing with patient risks associated with telecare [ 9 ].

The initial literature search in the two online databases identified 940 records. From these records, 65 full text articles were screened for eligibility. Then 36 full-text articles were excluded because they pertained to patient transfer within the hospital or to another hospital, or to patient hand-over situations. Finally, 29 studies were included in this review. Included studies are listed in Table 2 . All document types were searched with a focus on primary research studies. The results of the search strategy are shown in Fig. 1 .

Flow chart literature search strategy

From these 29 studies, 13 studies dealt with the quality analysis of discharge letters, 12 studies with delayed transmission of medical discharge letters and just as many with the lack of information in medical discharge letters. Only few studies dealt with training on writing medical discharge letters and with understanding of patients of their medical discharge letters. The descriptive information of the included articles is presented in Table 2 . Overall quality of the articles was found to be acceptable, with clearly stated research questions and appropriate used methods.

Risk factors

In the following the identified major risk factors concerning the medical discharge letter are presented in a narrative summary.

Delayed delivery

The medical discharge letters should arrive at the GP soon after hospital discharge to ensure the quickest possible further treatment [ 4 ]. If letters are delivered weeks after the hospital stay, a continuous treatment of the patient cannot be ensured. Furthermore, the author of the medical discharge letter will no longer have current data after the discharge of the patient, which may result in a loss of important information [ 10 ]. Interfaces between different treatment areas and organizational units are known to cause a loss of information and a lack of quality in patient handling [ 11 ]. The improvement of information transfer between different healthcare providers during the transition of patients has been recommended to improve patient care [ 12 , 13 ]. Delayed communication of findings may lead to a lack of continuity of care and suboptimal outcomes, as well as decreased satisfaction levels for both patients and GPs [ 14 , 15 , 16 ]. In a review of Kripalani et al., it was shown that 25% of discharge summaries were never received by GPs [ 17 ]. This has several negative consequences for patients. Li et al. [ 18 ] found that a delayed transmission or absence of the medical discharge summary is related to patient readmission, and a study by Gilmore-Bykovskyi [ 19 ] found a strong relationship between patients whose discharge summaries omitted designation of a responsible clinician/clinic for follow-up care and re-hospitalisation and/or death. A Swedish study by Carlsson et al. [ 20 ] points out that a lack of accuracy and continuity in discharge information on eating difficulties may increase risk of undernutrition and related complications. A study of Were et al. [ 18 ] investigated pending lab results in medical discharge summaries and found that only 16% of tests with pending results were mentioned in the discharge summaries, and Walz et al. [ 21 ] found that approximately one third of the sub-acute care patients had pending lab results at discharge, but only 11% of these were documented in the medical discharge summaries.

Quality, lack of information

Medical discharge letters are a key communication tool for patient safety issues [ 17 ]. Incomplete and insufficient medical discharge letters increase the risks of readmission and myriad other complications [ 22 ]. Langelaan et al. (2017) evaluated more than 2000 medical discharge letters and found that in about 60% of the letters essential information was missing, such as a change of the existing medication, laboratory data, and even data on the patients themselves [ 23 ]. Accurate and complete medical discharge summaries are essential for patient safety [ 17 , 24 , 25 ]. Addresses; patient data, including duration of stay; diagnoses; procedures; operations; epicrisis and therapy recommendations; as well as findings in the appendix; are minimum requirements that are supposed to be included in the medical discharge letter [ 4 ]. However, it was found that key components are often lacking in medical discharge letters, including information about follow-up and management plans [ 23 , 26 ], test results [ 27 , 28 , 29 ], and medication adjustments [ 30 , 31 , 32 , 33 , 34 , 35 ]. In a review of Wimsett et al. [ 36 ] key components of a high-quality medical discharge summary were identified in 32 studies. These important components were discharge diagnosis, the received treatment, results of investigations as well as follow-up plans.

Accuracy of patients’ medication information is important to ensure patient safety. Hospital doctors expect GPs to continue with the prescribed (or modified) drug therapy. However, the selection of certain drugs is not always transparent for the GPs. A study by Grimes et al. [ 30 ] found that a discrepancy in medication documentation at discharge occurred in 10.8% of patients. From these patients nearly 65.5% were affected by discrepancies in medication documentation. The most prevalent inconsistency was drug omission (20.9%). Only 2% of patients were contacted, although general patient harm was assessed. A Swedish study of 2009 [ 37 ] investigated the quality improvement of medical discharge summaries. A higher quality of discharge letter led to an average of 45% fewer medication errors per patient.

A recent study by Tong et al. [ 38 ] revealed a reduced rate of medication errors in medical discharge summaries that were completed by a hospital pharmacist. Hospital pharmacists play a key role in preparing the discharge medication information transferred to GPs upon patient discharge and should work closely with hospital doctors to ensure accurate medication information that is quickly communicated to GPs at transitions of care [ 39 ]. Most hospitals have introduced electronic systems to improve the discharge communication, and many studies found a significant overall improvement in electronic transfer systems due to better documentation of information about follow-up care, pending test results, and information provided to patients and relatives [ 40 , 41 , 42 ]. Mehta et al. [ 43 ] found that the changeover to a new electronic system resulted in an increased completeness of discharge summaries from 60.7 to 75.0% and significant improvements in levels of completeness in certain categories.

Writing of medical discharge letter is missing in medical education

Both junior doctors as well as medical students reported that they received inadequate guidance and training on how to write medical discharge summaries [ 44 , 45 ] and recognized that higher priority is often given to pressing clinical tasks [ 46 ]. Research into the causes of prescribing errors by junior doctors at hospitals in the UK has revealed that latent conditions like organizational processes, busy environments, and medical care for complex patients can lead to medication errors in the medical discharge summary [ 47 ].

Fortunately, some study results demonstrate that information and education on writing medical discharge letters would enhance communication to the GPs and prevent errors during the patient discharge process [ 37 ]. Minimal formal teaching about writing medical discharge summaries is common in most medical schools [ 39 , 46 ]; however, a study by Shivji et al. has shown that simple, intensive educational sessions can lead to an improvement in the writing process of medical discharge summaries and communication with primary care [ 48 ].

Since the medical discharge letter should meet specific quality criteria, senior physicians and/or the head physician correct(s) and validate(s) the letter. The medical discharge letter therefore represents an essential learning target [ 8 ]. Training activities and workshops are necessary for junior doctors to improve writing medical discharge letters [ 44 , 49 ]. It might be also useful for young doctors to use checklists or other structured procedures to improve writing [ 4 ]. Maher et al. showed that the use of a checklist enhanced the quality (content, structure, and clarity) of medical discharge letters written by medical students [ 50 ].

In the following Table 3 main risk factors of the medical discharge letter are summarized.

The results of this systematic literature research indicate notable risk factors relating to the medical discharge letter. In a study by Sendlhofer et al., 360 risks were identified in hospital settings [ 51 ]. From these, 176 risks were scored as strategic and clustered into “top risks”. Top risks included medication errors, information errors, and lack of communication, among others. During this review, these potential risk factors were also identified in terms of the medical discharge letter.

Delayed sending and low quality of medical discharge letters to the referring physicians, may adversely affect the further course of treatment. However, a study of Spencer et al. has determined rates of failures in processing actions requested in hospital discharge summaries in general practice. It was found that requested medication changes were not made in 17% and patient harm occurred in 8% in relation to failures [ 52 ].

Despite the existence of reliable standards [ 53 ] many physicians are not adequately trained for writing medical discharge letters during their studies. Regular trainings and workshops and standardized checklists may optimize the quality of the medical discharge letter. Furthermore, electronic discharge letters have the potential to easily and quickly extract important information such as diagnoses, medication, and test results into a structured discharge document, and offer important advantages such as reliability, speed of information transfer, and standardization of content. Comprehensive discharge letters reduce the readmission rate and increase safety and quality by discharging of the patient. A missing structure, as well as a complex language, illegible handwriting, and unknown abbreviations, make reading medical discharge letters more complicated [ 4 ]. At least, poor patient understanding of their diagnosis and treatment plans and incomprehensible recommendations can adversely impact clinical outcome following hospital discharge. Many studies confirm that inadequate communication of findings [ 3 , 39 , 54 ] is an important risk factor in patients’ safety [ 51 ].

Most medical information in the discharge letter is not understood by patients (as well as relatives and other persons that are involved in the patients’ caring) and patients themselves do not receive a comprehensible medical discharge letter. The content of the medical discharge letter is often useless for the patient due to its medical terminology and content that is not matching with the patient’s level of knowledge or health literacy [ 55 , 56 , 57 ]. Poor understanding of diagnoses and related discharge plans are common among patients and family members and often accompanied by unplanned hospital readmissions [ 58 , 59 , 60 , 61 ]. In a study by Lin et al., it was shown that a patient-directed discharge letter enhanced understanding for hospitalization and for recommendations. Furthermore, verbal communication of the letter contents, explanation of every section of the medical discharge letter, and the opportunity for discussion and asking questions improved patient comprehension [ 7 ]. A study by O’Leary et al. showed that roughly 80–95% of patients with breast tumours want to be informed and educated about their illness, treatment, and prognosis [ 62 ].

High quality of care is characterized by a patient-centered communication, where the patient’s personal needs are also in focus [ 63 ]. Translation of medical terms in reports and letters leads to a better understanding of the disease and, interestingly, the avoidance of medical terms did not lead to deterioration in the transmission of information between the treating physicians. Moreover, it was found that the minimisation of medical terminology in medical discharge letters improved understanding and perception of patients’ ability to manage chronic health conditions [ 64 ]. In effect, it is clear that patient-centered communication improves outcome, mental health, patient satisfaction and reduces the use of health services [ 65 ].

Strengths and limitations

We have identified key problems with the medical discharge summaries that negatively impact patients’ safety and wellbeing. However, there is a heterogeneous nature of the included studies in terms of study design, sample size, outcomes, and language. Only two reviewers screened the studies for eligibility and only full-text articles were included in the literature review; furthermore, only the databases Pubmed and Cochrane library were screened for appropriate studies. Due to these constraints, there is a chance that other relevant studies may have been missed.

High-quality medical discharge letters are essential to ensure patient safety. To address this, the current review identified the major risk factors as delayed sending and low quality of medical discharge letters, lack of information and patient understanding, and inadequate training in writing medical discharge letters. In future, research studies should focus on improving the communication of pending test results and findings at discharge, and on evaluating the impact that this improved communication has on patient outcomes. Moreover, a simple patient-centered medical discharge letter may improve the patient’s (as well as family members’ and other caregivers’) understanding of disease, treatment and post-discharge recommendations.

Abbreviations

General practitioner

Randomized Controlled Trial

STrengthening the Reporting of OBservational studies in Epidemiology

United Kingdom

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Schwarz, C.M., Hoffmann, M., Schwarz, P. et al. A systematic literature review and narrative synthesis on the risks of medical discharge letters for patients’ safety. BMC Health Serv Res 19 , 158 (2019). https://doi.org/10.1186/s12913-019-3989-1

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Synthesis without meta...

Synthesis without meta-analysis (SWiM) in systematic reviews: reporting guideline

Linked opinion.

Grasping the nettle of narrative synthesis

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Peer review
Mhairi Campbell , research associate 1 ,
Joanne E McKenzie , associate professor 2 ,
Amanda Sowden , professor 3 ,
Srinivasa Vittal Katikireddi , clinical senior research fellow 1 ,
Sue E Brennan , research fellow 2 ,
Simon Ellis , associate director 4 ,
Jamie Hartmann-Boyce , senior researcher 5 ,
Rebecca Ryan , senior esearch fellow 6 ,
Sasha Shepperd , professor 7 ,
James Thomas , professor 8 ,
Vivian Welch , associate professor 9 ,
Hilary Thomson , senior research fellow 1
1 MRC/CSO Social and Public Health Sciences Unit, University of Glasgow, UK
2 School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia
3 Centre for Reviews and Dissemination, University of York, York, UK
4 Centre for Guidelines, National Institute for Health and Care Excellence, London, UK
5 Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK
6 School of Psychology and Public Health, La Trobe University, Melbourne, Australia
7 Nuffield Department of Population Health, University of Oxford, Oxford, UK
8 Evidence for Policy and Practice Information and Coordinating Centre, University College London, London, UK
9 Bruyere Research Institute, Ottawa, Canada
Correspondence to: M Campbell Mhairi.Campbell{at}glasgow.ac.uk
Accepted 8 October 2019

In systematic reviews that lack data amenable to meta-analysis, alternative synthesis methods are commonly used, but these methods are rarely reported. This lack of transparency in the methods can cast doubt on the validity of the review findings. The Synthesis Without Meta-analysis (SWiM) guideline has been developed to guide clear reporting in reviews of interventions in which alternative synthesis methods to meta-analysis of effect estimates are used. This article describes the development of the SWiM guideline for the synthesis of quantitative data of intervention effects and presents the nine SWiM reporting items with accompanying explanations and examples.

Summary points

Systematic reviews of health related interventions often use alternative methods of synthesis to meta-analysis of effect estimates, methods often described as “narrative synthesis”

Serious shortcomings in reviews that use “narrative synthesis” have been identified, including a lack of description of the methods used; unclear links between the included data, the synthesis, and the conclusions; and inadequate reporting of the limitations of the synthesis

The Synthesis Without Meta-analysis (SWiM) guideline is a nine item checklist to promote transparent reporting for reviews of interventions that use alternative synthesis methods

The SWiM items prompt users to report how studies are grouped, the standardised metric used for the synthesis, the synthesis method, how data are presented, a summary of the synthesis findings, and limitations of the synthesis

The SWiM guideline has been developed using a best practice approach, involving extensive consultation and formal consensus

Decision makers consider systematic reviews to be an essential source of evidence. 1 Complete and transparent reporting of the methods and results of reviews allows users to assess the validity of review findings. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; http://www.prisma-statement.org/ ) statement, consisting of a 27 item checklist, was developed to facilitate improved reporting of systematic reviews. 2 Extensions are available for different approaches to conducting reviews (for example, scoping reviews 3 ), reviews with a particular focus (for example, harms 4 ), and reviews that use specific methods (for example, network meta-analysis. 5 ) However, PRISMA provides limited guidance on reporting certain aspects of the review, such as the methods for presentation and synthesis, and no reporting guideline exists for synthesis without meta-analysis of effect estimates. We estimate that 32% of health related systematic reviews of interventions do not do meta-analysis, 6 7 8 instead using alternative approaches to synthesis that typically rely on textual description of effects and are often referred to as narrative synthesis. 9 Recent work highlights serious shortcomings in the reporting of narrative synthesis, including a lack of description of the methods used, lack of transparent links between study level data and the text reporting the synthesis and its conclusions, and inadequate reporting of the limitations of the synthesis. 7 This suggests widespread lack of familiarity and misunderstanding around the requirements for transparent reporting of synthesis when meta-analysis is not used and indicates the need for a reporting guideline.

Scope of SWiM reporting guideline

This paper presents the Synthesis Without Meta-analysis (SWiM) reporting guideline. The SWiM guideline is intended for use in systematic reviews examining the quantitative effects of interventions for which meta-analysis of effect estimates is not possible, or not appropriate, for a least some outcomes. 10 Such situations may arise when effect estimates are incompletely reported or because characteristics of studies (such as study designs, intervention types, or outcomes) are too diverse to yield a meaningful summary estimate of effect. 11 In these reviews, alternative presentation and synthesis methods may be adopted, (for example, calculating summary statistics of intervention effect estimates, vote counting based on direction of effect, and combining P values), and SWiM provides guidance for reporting these methods and results. 11 Specifically, the SWiM guideline expands guidance on “synthesis of results” items currently available, such as PRISMA (items 14 and 21) and RAMESES (items 11, 14, and 15). 2 12 13 SWiM covers reporting of the key features of synthesis including how studies are grouped, synthesis methods used, presentation of data and summary text, and limitations of the synthesis.

SWiM is not intended for use in reviews that synthesise qualitative data, for which reporting guidelines are already available, including ENTREQ for qualitative evidence synthesis and eMERGe for meta-ethnography. 14 15

Development of SWiM reporting guideline

A protocol for the project is available, 10 and the guideline development was registered with the EQUATOR Network, after confirmation that no similar guideline was in development. All of the SWiM project team are experienced systematic reviewers, and one was a co-author on guidance on the conduct of narrative synthesis (AS). 9 A project advisory group was convened to provide greater diversity in expertise. The project advisory group included representatives from collaborating Cochrane review groups, the Campbell Collaboration, and the UK National Institute for Health and Care Excellence (see supplementary file 1).

The project was informed by recommendations for developing guidelines for reporting of health research. 16 We assessed current practice in reporting synthesis of effect estimates without meta-analysis and used the findings to devise an initial checklist of reporting items in consultation with the project advisory group. We invited 91 people, all systematic review methodologists or authors of reviews that synthesised results from studies without using meta-analysis, to participate in a three round Delphi exercise, with a response rate of 48% (n=44/91) in round one, 54% (n=37/68) in round two, and 82% (n=32/39) in round three. The results were discussed at a consensus meeting of an expert panel (the project advisory group plus one additional methodological expert) (see supplementary file 1). After the meeting, we piloted the revised guideline to assess ease of use and face validity. Eight systematic reviewers with varying levels of experience, who had not been involved in the Delphi exercise, were asked to read and apply the guideline. We conducted short interviews with the pilot participants to identify any clarification needed in the items or their explanations. We subsequently revised the items and circulated them for comment among the expert panel, before finalising them. Full methodological details of the SWiM guideline development process are provided in supplementary file 1.

Synthesis without meta-analysis reporting items

We identified nine items to guide the reporting of synthesis without meta-analysis. Table 1 shows these SWiM reporting items. An online version is available at www.equator-network.org/reporting-guidelines . An explanation and elaboration for each of the reporting items is provided below. Examples to illustrate the reporting items and explanations are provided in supplementary file 2.

Synthesis Without Meta-analysis (SWiM) items: SWiM is intended to complement and be used as an extension to PRISMA

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Item 1: grouping studies for synthesis

1a) description.

Provide a description of, and rationale for, the groups used in the synthesis (for example, groupings of interventions, population, outcomes, study design).

1a) Explanation

Methodological and clinical or conceptual diversity may occur (for example, owing to inclusion of diverse study designs, outcomes, interventions, contexts, populations), and it is necessary to clearly report how these study characteristics are grouped for the synthesis, along with the rationale for the groups (see Cochrane Handbook Chapter 3 17 ). Although reporting the grouping of study characteristics in all reviews is important, it is particularly important in reviews without meta-analysis, as the groupings may be less evident than when meta-analysis is used.

Providing the rationale, or theory of change, for how the intervention is expected to work and affect the outcome(s) will inform authors’ and review users’ decisions about the appropriateness and usefulness of the groupings. A diagram, or logic model, 18 19 can be used to visually articulate the underlying theory of change used in the review. If the theory of change for the intervention is provided in full elsewhere (for example, in the protocol), this should be referenced. In Cochrane reviews, the rationale for the groups can be outlined in the section “How the intervention is expected to work.”

1b) Description

Detail and provide rationale for any changes made subsequent to the protocol in the groups used in the synthesis.

1b) Explanation

Decisions about the planned groups for the syntheses may need to be changed following study selection and data extraction. This may occur as a result of important variations in the population, intervention, comparison, and/or outcomes identified after the data are collected, or where limited data are available for the pre-specified groupings, and the groupings may need to be modified to facilitate synthesis (Cochrane Handbook Chapter 2 20 ). Reporting changes to the planned groups, and the reason(s) for these, is important for transparency, as this allows readers to assess whether the changes may have been influenced by study findings. Furthermore, grouping at a broader level of (any or multiple) intervention, population, or outcome will have implications for the interpretation of the synthesis findings (see item 8).

Item 2: describe the standardised metric and transformation method used

Description.

Describe the standardised metric for each outcome. Explain why the metric(s) was chosen, and describe any methods used to transform the intervention effects, as reported in the study, to the standardised metric, citing any methodological guidance used.

Explanation

The term “standardised metric” refers to the metric that is used to present intervention effects across the studies for the purpose of synthesis or interpretation, or both. Examples of standardised metrics include measures of intervention effect (for example, risk ratios, odds ratios, risk differences, mean differences, standardised mean differences, ratio of means), direction of effect, or P values. An example of a statistical method to convert an odds ratio to a standardised mean difference is that proposed by Chinn (2000). 21 For other methods and metrics, see Cochrane Handbook Chapter 6. 22

Item 3: describe the synthesis methods

Describe and justify the methods used to synthesise the effects for each outcome when it was not possible to undertake a meta-analysis of effect estimates.

For various reasons, it may not be possible to do a meta-analysis of effect estimates. In these circumstances, other synthesis methods need to be considered and specified. Examples include combining P values, calculating summary statistics of intervention effect estimates (for example, median, interquartile range) or vote counting based on direction of effect. See table 2 for a summary of possible synthesis methods (for further details, see McKenzie and Brennan 2019 11 ). Justification should be provided for the chosen synthesis method.

Questions answered according to types of synthesis methods and types of data used

Item 4: criteria used to prioritise results for summary and synthesis

Where applicable, provide the criteria used, with supporting justification, to select particular studies, or a particular study, for the main synthesis or to draw conclusions from the synthesis (for example, based on study design, risk of bias assessments, directness in relation to the review question).

Criteria may be used to prioritise the reporting of some study findings over others or to restrict the synthesis to a subset of studies. Examples of criteria include the type of study design (for example, only randomised trials), risk of bias assessment (for example, only studies at a low risk of bias), sample size, the relevance of the evidence (outcome, population/context, or intervention) pertaining to the review question, or the certainty of the evidence. Pre-specification of these criteria provides transparency as to why certain studies are prioritised and limits the risk of selective reporting of study findings.

Item 5: investigation of heterogeneity in reported effects

State the method(s) used to examine heterogeneity in reported effects when it is not possible to do a meta-analysis of effect estimates and its extensions to investigate heterogeneity.

Informal methods to investigate heterogeneity in the findings may be considered when a formal statistical investigation using methods such as subgroup analysis and meta-regression is not possible. Informal methods could involve ordering tables or structuring figures by hypothesised modifiers such as methodological characteristics (for example, study design), subpopulations (for example, sex, age), intervention components, and/or contextual/setting factors (see Cochrane Handbook Chapter 12 11 ). The methods used and justification for the chosen methods should be reported. Investigations of heterogeneity should be limited, as they are rarely definitive; this is more likely to be the case when informal methods are used. It should also be noted if the investigation of heterogeneity was not pre-specified.

Item 6: certainty of evidence

Describe the methods used to assess the certainty of the synthesis findings.

The assessment of the certainty of the evidence should aim to take into consideration the precision of the synthesis finding (confidence interval if available), the number of studies and participants, the consistency of effects across studies, the risk of bias of the studies, how directly the included studies address the planned question (directness), and the risk of publication bias. GRADE (Grading of Recommendations, Assessment, Development and Evaluations) is the most widely used framework for assessing certainty (Cochrane Handbook Chapter 14 23 ). However, depending on the synthesis method used, assessing some domains (for example, consistency of effects when vote counting is undertaken) may be difficult.

Item 7: data presentation methods

Describe the graphical and tabular methods used to present the effects (for example, tables, forest plots, harvest plots).

Specify key study characteristics (for example, study design, risk of bias) used to order the studies, in the text and any tables or graphs, clearly referencing the studies included

Study findings presented in tables or graphs should be ordered in the same way as the syntheses are reported in the narrative text to facilitate the comparison of findings from each included study. Key characteristics, such as study design, sample size, and risk of bias, which may affect interpretation of the data, should also be presented. Examples of visual displays include forest plots, 24 harvest plots, 25 effect direction plots, 26 albatross plots, 27 bubble plots, 28 and box and whisker plots. 29 McKenzie and Brennan (2019) provide a description of these plots, when they should be used, and their pros and cons. 11

Item 8: reporting results

For each comparison and outcome, provide a description of the synthesised findings and the certainty of the findings. Describe the result in language that is consistent with the question the synthesis addresses and indicate which studies contribute to the synthesis.

For each comparison and outcome, a description of the synthesis findings should be provided, making clear which studies contribute to each synthesis (for example, listing in the text or tabulated). In describing these findings, authors should be clear about the nature of the question(s) addressed (see table 2 , column 1), the metric and synthesis method used, the number of studies and participants, and the key characteristics of the included studies (population/settings, interventions, outcomes). When possible, the synthesis finding should be accompanied by a confidence interval.An assessment of the certainty of the effect should be reported.

Results of any investigation of heterogeneity should be described, noting if it was not pre-planned and avoiding over-interpretation of the findings.

If a pre-specified logic model was used, authors may report any changes made to the logic model during the review or as a result of the review findings. 30

Item 9: limitations of the synthesis

Report the limitations of the synthesis methods used and/or the groupings used in the synthesis and how these affect the conclusions that can be drawn in relation to the original review question.

When reporting limitations of the synthesis, factors to consider are the standardised metric(s) used, the synthesis method used, and any reconfiguration of the groups used to structure the synthesis (comparison, intervention, population, outcome).

The choice of metric and synthesis method will affect the question addressed (see table 2 ). For example, if the standardised metric is direction of effect, and vote counting is used, the question will ask “is there any evidence of an effect?” rather than “what is the average intervention effect?” had a random effects meta-analysis been used.

Limitations of the synthesis might arise from post-protocol changes in how the synthesis was structured and the synthesis method selected. These changes may occur because of limited evidence, or incompletely reported outcome or effect estimates, or if different effect measures are used across the included studies. These limitations may affect the ability of the synthesis to answer the planned review question—for example, when a meta-analysis of effect estimates was planned but was not possible.

The SWiM reporting guideline is intended to facilitate transparent reporting of the synthesis of effect estimates when meta-analysis is not used. The guideline relates specifically to transparently reporting synthesis and presentation methods and results, and it is likely to be of greatest relevance to reviews that incorporate diverse sources of data that are not amenable to meta-analysis. The SWiM guideline should be used in conjunction with other reporting guidelines that cover other aspects of the conduct of reviews, such as PRISMA. 31 We intend SWiM to be a resource for authors of reviews and to support journal editors and readers in assessing the conduct of a review and the validity of its findings.

The SWiM reporting items are intended to cover aspects of presentation and synthesis of study findings that are often left unreported when methods other than meta-analysis have been used. 7 These include reporting of the synthesis structure and comparison groupings (items 1, 4, 5, and 6), the standardised metric used for the synthesis (item 2), the synthesis method (items 3 and 9), presentation of data (item 7), and a summary of the synthesis findings that is clearly linked to supporting data (item 8). Although the SWiM items have been developed specifically for the many reviews that do not include meta-analysis, SWiM promotes the core principles needed for transparent reporting of all synthesis methods including meta-analysis. Therefore, the SWiM items are relevant when reporting synthesis of quantitative effect data regardless of the method used.

Reporting guidelines are sometimes interpreted as providing guidance on conduct or used to assess the quality of a study or review; this is not an appropriate application of a reporting guideline, and SWiM should not be used to guide the conduct of the synthesis. For guidance on how to conduct synthesis using the methods referred to in SWiM, we direct readers to the second edition of the Cochrane Handbook for Systematic Reviews of Interventions, specifically chapter 12. 11 Although an overlap inevitably exists between reporting and conduct, the SWiM reporting guideline is not intended to be prescriptive about choice of methods, and the level of detail for each item should be appropriate. For example, investigation of heterogeneity (item 5) may not always be necessary or useful. In relation to SWiM, we anticipate that the forthcoming update of PRISMA will include new items covering a broader range of synthesis methods, 32 but it will not provide detailed guidance and examples on synthesis without meta-analysis.

The SWiM reporting guideline emerged from a project aiming to improve the transparency and conduct of narrative synthesis (ICONS-Quant: Improving the CONduct and reporting of Narrative Synthesis). 10 Avoidance of the term “narrative synthesis” in SWiM is a deliberate move to promote clarity in the methods used in reviews in which the synthesis does not rely on meta-analysis. The use of narrative is ubiquitous across all research and can serve a valuable purpose in the development of a coherent story from diverse data. 33 34 However, within the field of evidence synthesis, narrative approaches to synthesis of quantitative effect estimates are characterised by a lack of transparency, making assessment of the validity of their findings difficult. 7 Together with the recently published guidance on conduct of alternative methods of synthesis, 11 the SWiM guideline aims to improve the transparency of, and subsequently trust in, the many reviews that synthesise quantitative data without meta-analysis, particularly for reviews of intervention effects.

Acknowledgments

We thank the participants of the Delphi survey and colleagues who informally piloted the guideline.

Contributors: All authors contributed to the development of SWiM. HT had the idea for the study. HT, SVK, AS, JEM, and MC designed the study methods. JT, JHB, RR, SB, SE, SS, and VW contributed to the consensus meeting and finalising the guideline items. MC prepared the first draft of the manuscript, and all authors critically reviewed and approved the final manuscript. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted. HT is the guarantor.

Project advisory group members: Simon Ellis, Jamie Hartmann-Boyce, Mark Petticrew, Rebecca Ryan, Sasha Shepperd, James Thomas, Vivian Welch.

Expert panel members: Sue Brennan, Simon Ellis, Jamie Hartmann-Boyce, Rebecca Ryan, Sasha Shepperd, James Thomas, Vivian Welch.

Funding: This project was supported by funds provided by the Cochrane Methods Innovation Fund. MC, HT, and SVK receive funding from the UK Medical Research Council (MC_UU_12017-13 and MC_UU_12017-15) and the Scottish Government Chief Scientist Office (SPHSU13 and SPHSU15). SVK is supported by an NHS Research Scotland senior clinical fellowship (SCAF/15/02). JEM is supported by an NHMRC career development fellowship (1143429). RR’s position is funded by the NHMRC Cochrane Collaboration Funding Program (2017-2010). The views expressed in this article are those of the authors and not necessarily those of their employer/host organisations or of Cochrane or its registered entities, committees, or working groups.

Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare: funding for the project as described above; HT is co-ordinating editor for Cochrane Public Health; SVK, SE, JHB, RR, and SS are Cochrane editors; JEM is co-convenor of the Cochrane Statistical Methods Group; JT is a senior editor of the second edition of the Cochrane Handbook; VW is editor in chief of the Campbell Collaboration and an associate scientific editor of the second edition of the Cochrane Handbook; SB is a research fellow at Cochrane Australia; no other relationships or activities that could appear to have influenced the submitted work.

Ethical approval: Ethical approval was obtained from the University of Glasgow College of Social Sciences Ethics Committee (reference number 400170060).

Transparency: The lead author affirms that the manuscript is an honest, accurate, and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.

Patient and public involvement: This research was done without patient involvement. Patients were not invited to comment on the study design and were not consulted to develop outcomes or interpret the results.

Dissemination to participants and related patient and public communities: The authors plan to disseminate the research through peer reviewed publications, national and international conferences, webinars, and an online training module and by establishing an email discussion group.

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/ .

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About Systematic Reviews

The Difference Between Narrative Review and Systematic Review

Automate every stage of your literature review to produce evidence-based research faster and more accurately.

Reviews in scientific research are tools that help synthesize literature on a topic of interest and describe its current state. Different types of reviews are conducted depending on the research question and the scope of the review. A systematic review is one such review that is robust, reproducible, and transparent. It involves collating evidence by using all of the eligible and critically appraised literature available on a certain topic. To know more about how to do a systematic review , you can check out our article at the link. The primary aim of a systematic review is to recommend best practices and inform policy development. Hence, there is a need for high-quality, focused, and precise methods and reporting. For more exploratory research questions, methods such as a scoping review are employed. Be sure you understand the difference between a systematic review and a scoping review , if you don’t, check out the link to learn more.

When the word “review” alone is used to describe a research paper, the first thing that should come to mind is that it is a literature review. Almost every researcher starts off their career with literature reviews. To know the difference between a systematic review and a literature review , read on here. Traditional literature reviews are also sometimes referred to as narrative reviews since they use narrative analysis to synthesize data. In this article, we will explore the differences between a systematic review and a narrative review, in further detail.

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Narrative Review vs Systematic Review

Both systematic and narrative reviews are classified as secondary research studies since they both use existing primary research studies e.g. case studies. Despite this similarity, there are key differences in their methodology and scope. The major differences between them lie in their objectives, methodology, and application areas.

Differences In Objective

The main objective of a systematic review is to formulate a well-defined research question and use qualitative and quantitative methods to analyze all the available evidence attempting to answer the question. In contrast, narrative reviews can address one or more questions with a much broader scope. The efficacy of narrative reviews is irreplaceable in tracking the development of a scientific principle, or a clinical concept. This ability to conduct a wider exploration could be lost in the restrictive framework of a systematic review.

Differences in Methodology

For systematic reviews, there are guidelines provided by the Cochrane Handbook, ROSES, and the PRISMA statement that can help determine the protocol, and methodology to be used. However, for narrative reviews, such standard guidelines do not exist. Although, there are recommendations available.

Systematic reviews comprise an explicit, transparent, and pre-specified methodology. The methodology followed in a systematic review is as follows,

Formulating the clinical research question to answer (PICO approach)
Developing a protocol (with strict inclusion and exclusion criteria for the selection of primary studies)
Performing a detailed and broad literature search
Critical appraisal of the selected studies
Data extraction from the primary studies included in the review
Data synthesis and analysis using qualitative or quantitative methods [3].
Reporting and discussing results of data synthesis.
Developing conclusions based on the findings.

A narrative review on the other hand does not have a strict protocol to be followed. The design of the review depends on its author and the objectives of the review. As yet, there is no consensus on the standard structure of a narrative review. The preferred approach is the IMRAD (Introduction, Methods, Results, and Discussion) [2]. Apart from the author’s preferences, a narrative review structure must respect the journal style and conventions followed in the respective field.

Differences in Application areas

Narrative reviews are aimed at identifying and summarizing what has previously been published. Their general applications include exploring existing debates, the appraisal of previous studies conducted on a certain topic, identifying knowledge gaps, and speculating on the latest interventions available. They are also used to track and report on changes that have occurred in an existing field of research. The main purpose is to deepen the understanding in a certain research area. The results of a systematic review provide the most valid evidence to guide clinical decision-making and inform policy development [1]. They have now become the gold standard in evidence-based medicine [1].

Although both types of reviews come with their own benefits and limitations, researchers should carefully consider the differences between them before making a decision on which review type to use.

Aromataris E, Pearson A. The systematic review: an overview. AJN. Am J Nurs. 2014;114(3):53–8.
Green BN, Johnson CD, Adams A. Writing narrative literature reviews for peer-reviewed journals: secrets of the trade. J Chiropratic Medicine 2006;5:101–117.
Linares-Espinós E, Hernández V, Domínguez-Escrig JL, Fernández-Pello S, Hevia V, Mayor J, et al. Metodología de una revisión sistemática. Actas Urol Esp. 2018;42:499–506.

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Issue publication date: 18 May 2021

This study explores the role of leadership in organisational innovation by reviewing several publications that discuss the relationship between various leadership styles and innovation.

Design/methodology/approach

The study followed a descriptive research methodology by reviewing 64 journal articles on the relationship between various leadership styles and innovation. The articles were analysed descriptively and then reviewed based on the leadership style it discusses to derive meaningful findings on the relationship between leadership and innovation.

Various leadership styles had a positive impact on organisational innovation either directly or indirectly, by influencing the organisational climate, employees' and leaders' behaviours or other organisational variables such as learning and knowledge sharing. Some leadership styles had both direct and indirect impacts on organisational innovation.

Research limitations/implications

This study collected journal articles published in almost all major electronic databases such as Emerald, ScienceDirect, Taylor & Francis and Scopus. However, the review is limited to journal articles in which the title, abstract or author-specified keywords contain the search terms “leadership” and “innovation,” and published between 2000 and 2019. Therefore, this review may miss some relevant research insights mentioned in the literature that discussed innovation or leadership separately not combined.

Originality/value

This study contributes to the existing body of research on leadership and innovation by extensively discussing the role of various leadership styles in determining organisational innovation. The analysis reveals that prior studies had many limitations and focused on specific leadership styles only. The study goes a step further by explaining how the leadership and innovation aspects are related, and classifying various leadership styles according to their impact on organisational innovation being direct, indirect or both.

Leadership style

Acknowledgements

This article is a part of an on-going PhD research. The authors would like to thank the editor and the anonymous referees for their valuable comments and suggestions that have improved this article significantly.

Alblooshi, M. , Shamsuzzaman, M. and Haridy, S. (2021), "The relationship between leadership styles and organisational innovation : A systematic literature review and narrative synthesis", European Journal of Innovation Management , Vol. 24 No. 2, pp. 338-370. https://doi.org/10.1108/EJIM-11-2019-0339

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A systematic literature review and narrative synthesis on the risks of medical discharge letters for patients' safety

Affiliations.

1 Research Unit for Safety in Health, c/o Division of Plastic, Aesthetic and Reconstructive Surgery, Department of Surgery, Medical University of Graz, Graz, Austria.
2 Research Unit for Safety in Health, c/o Division of Plastic, Aesthetic and Reconstructive Surgery, Department of Surgery, Medical University of Graz, Graz, Austria. [email protected].
3 Executive Department for Quality and Risk Management, University Hospital Graz, Auenbruggerplatz 1/3, 8036, Graz, Austria. [email protected].
4 Carinthia University of Applied Science, Feldkirchen, Austria.
5 Executive Department for Quality and Risk Management, University Hospital Graz, Auenbruggerplatz 1/3, 8036, Graz, Austria.
PMID: 30866908
PMCID: PMC6417275
DOI: 10.1186/s12913-019-3989-1

Background: The medical discharge letter is an important communication tool between hospitals and other healthcare providers. Despite its high status, it often does not meet the desired requirements in everyday clinical practice. Occurring risks create barriers for patients and doctors. This present review summarizes risks of the medical discharge letter.

Methods: The research question was answered with a systematic literature research and results were summarized narratively. A literature search in the databases PubMed and Cochrane Library for Studies between January 2008 and May 2018 was performed. Two authors reviewed the full texts of potentially relevant studies to determine eligibility for inclusion. Literature on possible risks associated with the medical discharge letter was discussed.

Results: In total, 29 studies were included in this review. The major identified risk factors are the delayed sending of the discharge letter to doctors for further treatments, unintelligible (not patient-centered) medical discharge letters, low quality of the discharge letter, and lack of information as well as absence of training in writing medical discharge letters during medical education.

Conclusions: Multiple risks factors are associated with the medical discharge letter. There is a need for further research to improve the quality of the medical discharge letter to minimize risks and increase patients' safety.

Keywords: Discharge letter; Discharge summary; Hospital discharge; Patient safety; Risk; Systematic review.

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Systematic Review
Communication
Health Personnel
Medical Records / standards*
Patient Discharge / standards*
Patient Safety / standards*
Professional Practice / standards

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v.8(11); 2016 Nov

How to Conduct a Systematic Review: A Narrative Literature Review

Nusrat jahan.

1 Psychiatry, Mount Sinai Chicago

Sadiq Naveed

2 Psychiatry, KVC Prairie Ridge Hospital

Muhammad Zeshan

3 Department of Psychiatry, Bronx Lebanon Hospital Icahn School of Medicine at Mount Sinai, Bronx, NY

Muhammad A Tahir

4 Psychiatry, Suny Upstate Medical University, Syracuse, NY

Systematic reviews are ranked very high in research and are considered the most valid form of medical evidence. They provide a complete summary of the current literature relevant to a research question and can be of immense use to medical professionals. Our goal with this paper is to conduct a narrative review of the literature about systematic reviews and outline the essential elements of a systematic review along with the limitations of such a review.

Introduction and background

A literature review provides an important insight into a particular scholarly topic. It compiles published research on a topic, surveys different sources of research, and critically examines these sources [ 1 ]. A literature review may be argumentative, integrative, historical, methodological, systematic, or theoretical, and these approaches may be adopted depending upon the types of analysis in a particular study [ 2 ].

Our topic of interest in this article is to understand the different steps of conducting a systematic review. Systematic reviews, according to Wright, et al., are defined as a “review of the evidence on a clearly formulated question that uses systematic and explicit methods to identify, select and critically appraise relevant primary research, and to extract and analyze data from the studies that are included in the review” [ 3 ]. A systematic review provides an unbiased assessment of these studies [ 4 ]. Such reviews emerged in the 1970s in the field of social sciences. Systematic reviews, as well as the meta-analyses of the appropriate studies, can be the best form of evidence available to clinicians [ 3 ]. The unsystematic narrative review is more likely to include only research selected by the authors, which introduces bias and, therefore, frequently lags behind and contradicts the available evidence [ 5 ].

Epidemiologist Archie Cochrane played a vital role in formulating the methodology of the systematic review [ 6 ]. Dr. Cochrane loved to study patterns of disease and how these related to the environment. In the early 1970s, he found that many decisions in health care were made without reliable, up-to-date evidence about the treatments used [ 6 ].

A systematic review may or may not include meta-analysis, depending on whether results from different studies can be combined to provide a meaningful conclusion. David Sackett defined meta-analysis as a “specific statistical strategy for assembling the results of several studies into a single estimate” [ 7 - 8 ].

While the systematic review has several advantages, it has several limitations which can affect the conclusion. Inadequate literature searches and heterogeneous studies can lead to false conclusions. Similarly, the quality of assessment is an important step in systematic reviews, and it can lead to adverse consequences if not done properly.

The purpose of this article is to understand the important steps involved in conducting a systematic review of all kinds of clinical studies. We conducted a narrative review of the literature about systematic reviews with a special focus on articles that discuss conducting reviews of randomized controlled trials. We discuss key guidelines and important terminologies and present the advantages and limitations of systematic reviews.

Narrative reviews are a discussion of important topics on a theoretical point of view, and they are considered an important educational tool in continuing medical education [ 9 ]. Narrative reviews take a less formal approach than systematic reviews in that narrative reviews do not require the presentation of the more rigorous aspects characteristic of a systematic review such as reporting methodology, search terms, databases used, and inclusion and exclusion criteria [ 9 ]. With this in mind, our narrative review will give a detailed explanation of the important steps of a systematic review.

Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) checklist

Systematic reviews are conducted based on predefined criteria and protocol. The PRISMA-P checklist, developed by Moher, et al., contains 17 items (26 including sub-items) comprising the important steps of a systematic review, including information about authors, co-authors, their mailing and email addresses, affiliations, and any new or updated version of a previous systematic review [ 9 ]. It also identifies a plan for documenting important protocol amendments, registry names, registration numbers, financial disclosures, and other support services [ 10 ]. Moher, et al. also state that methods of systematic reviews involve developing eligibility criteria and describing information sources, search strategies, study selection processes, outcomes, assessment of bias in individual studies, and data synthesis [ 10 ].

Research question

Writing a research question is the first step in conducting a systematic review and is of paramount importance as it outlines both the need and validity of systematic reviews (Nguyen, et al., unpublished data). It also increases the efficiency of the review by limiting the time and cost of identifying and obtaining relevant literature [ 11 ]. The research question should summarize the main objective of a systematic review.

An example research question might read, “How does attention-deficit/hyperactivity disorder (ADHD) affect the academic performance of middle school children in North America?” The question focuses on the type of data, analysis, and topic to be discussed (i.e., ADHD among North American middle school students). Try to avoid research questions that are too narrow or broad—they can lead to the selection of only a few studies and the ability to generalize results to any other populations may be limited. An example of a research question that is too narrow would be, “What is the prevalence of ADHD in children and adolescents in Chicago, IL?” Alternately, if the research question is too broad, it can be difficult to reach a conclusion due to poor methodology. An example of a research question that is too broad in scope would be, “What are the effects of ADHD on the functioning of children and adolescents in North America?”

Different tools that can be used to help devise a research question, depending on the type of question, are: population, intervention, comparator, and outcomes (PICO); sample, phenomenon of interest, design, evaluation, and research type (SPIDER); setting, perspective, intervention, comparison, and evaluation (SPICE); and expectation, client group, location, impact, professionals, and service (ECLIPSE).

The PICO approach is mostly used to compare different interventions with each other. It helps to formulate a research question related to prognosis, diagnosis, and therapies [ 12 ].

Scenario: A 50-year-old white woman visited her psychiatrist with a diagnosis of major depressive disorder. She was prescribed fluoxetine, which she feels has been helpful. However, she experienced some unpleasant side effects of nausea and abdominal discomfort. She has recently been told by a friend about the use of St. John’s wort in treating depression and would like to try this in treating her current depression. (Formulating research questions, unpublished data).

In the above-mentioned scenario, the sample population is a 50-year-old female with major depressive disorder; the intervention is St. John’s wort; the comparison is fluoxetine; and the outcome would be efficacy and safety. In order to see the outcome of both efficacy and safety, we will compare the efficacy and safety of both St. John’s wort and fluoxetine in a sample population for treating depression. This scenario represents an example where we can apply the PICO approach to compare two interventions.

In contrast, the SPIDER approach is focused more on study design and samples rather than populations [ 13 ]. The SPIDER approach can be used in this research question: “What is the experience of psychiatry residents attending a transgender education?” The sample is psychiatry residents; the phenomenon of interest is transgender education; the design is a survey; the evaluation looks at the experience; and the research type is qualitative.

The SPICE approach can be used to evaluate the outcome of a service, intervention, or project [ 14 ]. The SPICE approach applies to the following research question: “In psychiatry clinics, does the combined use of selective serotonin reuptake inhibitor (SSRI) and psychotherapy reduce depression in an outpatient clinic versus SSRI therapy alone?” The setting is the psychiatry clinic; the perspective/population is the outpatient; the intervention is combined psychotherapy and SSRI; the comparison is SSRI alone; and the evaluation is reduced depression.

The ECLIPSE approach is useful for evaluating the outcome of a policy or service (Nguyen, et al., unpublished data). ECLIPSE can apply in the following research question: “How can a resident get access to medical records of patients admitted to inpatient from other hospitals?” The expectation is: “What are you looking to improve/change to increase access to medical records for patients admitted to inpatient?” The client group is the residents; the location is the inpatient setting; the impact would be the residents having easy access to medical records from other hospitals; and the professionals in this scenario would be those involved in improving the service experiences such as hospital administrators and IT staff.

Inclusion and exclusion criteria

Establishing inclusion and exclusion criteria come after formulating research questions. The concept of inclusion and exclusion of data in a systematic review provides a basis on which the reviewer draws valid and reliable conclusions regarding the effect of the intervention for the disorder under consideration [ 11 ]. Inclusions and exclusion are based on preset criteria for specific systematic review. It should be done before starting the literature search in order to minimize the possibility of bias.

Eligibility criteria provide the boundaries of the systematic review [ 15 ]. Participants, interventions, and comparison of a research question provide the basis for eligibility criteria [ 15 ]. The inclusion criteria should be able to identify the studies of interest and, if the inclusion criteria are too broad or too narrow, it can lead to an ineffective screening process.

Protocol registration

Developing and registering research protocol is another important step of conducting a systematic review. The research protocol ensures that a systematic review is carefully planned and explicitly documented before the review starts, thus promoting consistency in conduct for the review team and supporting the accountability, research integrity, and transparency of the eventually completed review [ 10 ]. PROSPERO and the Cochrane Database of Systematic Reviews are utilized for registering research protocols and research questions, and they check for prior existing duplicate protocols or research questions. PROSPERO is an international database of prospectively registered systematic reviews related to health care and social sciences (PRISMA, 2016). It is funded by the National Institute for Health Research. The Cochrane Collaboration concentrates on producing systematic reviews of interventions and diagnostic test accuracy but does not currently produce reviews on questions of prognosis or etiology [ 16 ].

A detailed and extensive search strategy is important for the systematic review since it minimizes bias in the review process [ 17 ].

Selecting and searching appropriate electronic databases is determined by the topic of interest. Important databases are: MEDLARS Online (MEDLINE), which is the online counterpart to the Medical Literature Analysis and Retrieval System (MEDLARS); Excerpta Medica Database (EMBASE); and Google Scholar. There are multiple electronic databases available based on the area of interest. Other important databases include: PsycINFO for psychology and psychiatry; Allied and Complementary Medicine Database (AMED) for complementary medicine; Manual, Alternative, and Natural Therapy Index System (MANTIS) for alternative medical literature; and Cumulative Index to Nursing and Allied Health Literature (CINAHL) for nursing and allied health [ 15 ].

Additional studies relevant for the review may be found by looking at the references of studies identified by different databases [ 15 ]. Non-indexed articles may be found by searching the content of journals, conferences proceedings, and abstracts. It will also help with letters and commentaries which may not get indexed [ 15 ]. Reviewing clinical trial registries can provide information about any ongoing trials or unpublished research [ 15 ]. A gray literature search can access unpublished papers, reports, and conference reports, and it generally covers studies that are published in an informal fashion, rather than in an indexed journal [ 15 ]. Further search can be performed by selecting important key articles and going through in-text citations [ 15 ].

Using Boolean operators, truncation, and wildcards

Boolean operators use the relationship between different search words to help with the search strategy. These are simple words (i.e., AND, OR, and NOT) which can help with more focused and productive results (poster, Jahan, et al.: How to conduct a systematic review. APPNA 39th Summer Convention. Washington, DC. 2016). The Boolean operator AND finds articles with all the search words. The use of OR broadens the focus of the search, and it will include articles with at least one search term. The researchers can also ignore certain results from the records by using NOT in the search strategy.

An example of AND would be using “depression” AND “children” in the search strategy with the goal of studying depression in children. This search strategy will include all the articles about both depression and children. The researchers may use OR if the emphasis of the study is mood disorders or affective disorders in adolescents. In that case, the search strategy will be “mood disorders” OR “affective disorders” AND “adolescents.” This search will find all the articles about mood disorders or affective disorders in adolescents. The researchers can use NOT if they only want to study depression in children and want to ignore bipolar disorder from the search. An example search in this scenario would be “depression” NOT “bipolar disorder” AND “children.” This will help ignore studies related to bipolar disorder in children.

Truncation and wildcards are other tools to make search strategy more comprehensive and focused. While the researchers search a database for certain articles, they frequently face terminologies that have the same initial root of a word but different endings. An example would be "autism," "autistic," and "autism spectrum disorder." These words have a similar initial root derived from “autis” but they end differently in each case. The truncation symbol (*) retrieves articles that contain words beginning with “autis” plus any additional characters. Wildcards are used for words with the same meanings but different spellings due to various reasons. For the words with spelling variations of a single letter, wildcard symbols can be used. When the researcher inputs “M+N” in the search bar, this returns results containing both “man” or “men” as the wildcard accounts for the spelling variations between the letters M and N.

Study selection

Study selection should be performed in a systematic manner, so reviewers deal with fewer errors and a lower risk of bias (online course, Li T, Dickersin K: Introduction to systematic review and meta-analysis. 2016. https://www.coursera.org/learn/systematic-review #). Study selection should involve two independent reviewers who select studies using inclusion and exclusion criteria. Any disagreements during this process should be resolved by discussion or by a third reviewer [ 10 ]. Specific study types can be selected depending on the research question. For example, questions on incidence and prevalence can be answered by surveys and cohort studies. Clinical trials can provide answers to questions related to therapy and screening. Queries regarding diagnostic accuracy can be answered by clinical trials and cross-sectional studies (online course, Li T, Dickersin K: Introduction to systematic review and meta-analysis. 2016. https://www.coursera.org/learn/systematic-review #). Prognosis and harm-related questions should use cohort studies and clinical trials, and etiology questions should use case-control and cohort studies (online course, Li T, Dickersin K: Introduction to systematic review and meta-analysis. 2016. https://www.coursera.org/learn/systematic-review #).

Data screening and data extractions are two of the major steps in conducting a systematic review [ 18 ]. Data screening involves searching for relevant articles in different databases using keywords. The next step of data screening is manuscript selection by reviewing each manuscript in the search results to compare that manuscript against the inclusion criteria [ 18 ]. The researchers should also review the references of the papers selected before selecting the final paper, which is the last step of data screening [ 18 ].

The next stage is extracting and appraising the data of the included articles [ 18 ]. A data extraction form should be used to help reduce the number of errors, and more than one person should record the data [ 17 ]. Data should be collected on specific points like population type, study authors, agency, study design, humanitarian crisis, target age groups, research strengths from the literature, setting, study country, type(s) of public health intervention, and health outcome(s) addressed by the public health intervention. All this information should then be put into an electronic database [ 18 ].

Assessing bias

Bias is a systematic error (or deviation from the truth) in results or inferences. Biases can change the results of any study and lead to an underestimation or overestimation of the true intervention effect [ 19 ]. Biases can impact any aspect of a review, including selecting studies, collecting and extracting data, and making a conclusion. Biases can vary in magnitude; some are small, with negligible effect, but some are substantial to a degree where an apparent finding may be entirely due to bias [ 19 ]. There are different types of bias, including, but not limited to, selection, detection, attrition, reporting, and performance.

Selection bias occurs when a sample selected is not representative of the whole general population. If randomization of the sample is done correctly, then chances of selection bias can be minimized [ 20 ].

Detection bias refers to systematic differences between groups in how outcomes are determined. This type of bias is based on knowledge of the intervention provided and its outcome [ 19 ].

Attrition bias refers to systematic differences between groups in withdrawals from a study [ 19 ]. The data will be considered incomplete if some subjects are withdrawn or have irregular visits during data collection.

Reporting bias refers to systematic differences between reported and unreported findings, and it is commonly seen during article reviews. Reporting bias is based on reviewer judgment about the outcome of selected articles [ 20 ].

Performance bias develops due to the knowledge of the allocated interventions by participants and personnel during the study [ 20 ]. Using a double-blind study design helps prevent performance bias, where neither the experimenter nor the subjects know which group contains controls and which group contains the test article [ 14 ].

Last step of systematic review: discussion

The discussion of a systematic review is where a summary of the available evidence for different outcomes is written and discussed [ 10 ]. The limitations of a systematic review are also discussed in detail. Finally, a conclusion is drawn after evaluating the results and considering limitations [ 10 ].

Discussion of the current article

Systematic reviews with or without a meta-analysis are currently ranked to be the best available evidence in the hierarchy of evidence-based practice [ 21 ]. We have discussed the methodology of a systematic review. A systematic review is classified in the category of filtered information because it appraises the quality of the study and its application in the field of medicine [ 21 ]. However, there are some limitations of the systematic review, as we mentioned earlier in our article. A large randomized controlled trial may provide a better conclusion than a systematic review of many smaller trials due to their larger sample sizes [ 22 ], which help the researchers generalize their conclusions for a bigger population. Other important factors to consider include higher dropout rates in large studies, co-interventions, and heterogeneity among studies included in the review.

As we discussed the limitations of the systematic review and its effect on quality of evidence, there are several tools to rate the evidence, such as the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system [ 22 ]. GRADE provides a structured approach to evaluating the risk of bias, serious inconsistency between studies, indirectness, imprecision of the results, and publication bias [ 22 ]. Another approach used to rate the quality of evidence is a measurement tool to assess systematic reviews (AMSTAR) [ 23 ]. It is also available in several languages [ 23 ].

Conclusions

Despite its limitations, a systematic review can add to the knowledge of the scientific community especially when there are gaps in the existing knowledge. However, conducting a systematic review requires different steps that involve different tools and strategies. It can be difficult at times to access and utilize these resources. A researcher can understand and strategize a systematic review following the different steps outlined in this literature review. However, conducting a systematic review requires a thorough understanding of all the concepts and tools involved, which is an extensive endeavor to be summed up in one article.

The Cochrane Handbook for Systematic Reviews of Interventions and the Center for Reviews and Dissemination (CRD) provide excellent guidance through their insightful and detailed guidelines. We recommend consulting these resources for further guidance.

Given that our article is a narrative review of the scholarly literature, it contains the same limitations as noted for any narrative review. We hope that our review of the means and methods for conducting a systematic review will be helpful in providing basic knowledge to utilize the resources available to the scientific community.

The content published in Cureus is the result of clinical experience and/or research by independent individuals or organizations. Cureus is not responsible for the scientific accuracy or reliability of data or conclusions published herein. All content published within Cureus is intended only for educational, research and reference purposes. Additionally, articles published within Cureus should not be deemed a suitable substitute for the advice of a qualified health care professional. Do not disregard or avoid professional medical advice due to content published within Cureus.

The authors have declared that no competing interests exist.

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Cai, C. Developing an R package and shiny app. Seed Grant. March – August 2023.
Yatcilla, Y. Doctoral Dissertations on Human-Animal Interactions: Update on Gerbasi et al, Travel Support, Presentation at International Society of Anthrozoology Conference, June 15-18, 2023.

Project List

Active projects (not published).

Cultural and Historical Factors Influence the Impact of Health Information Literacy Interventions in Black American Communities: A Qualitative Systematic Review, Bethany McGowan.
A Scoping Review of Household Factors Contributing to Dietary Quality and Food Security in Low-Income Households with School-Age Children in the U.S., Bethany McGowan
Opioid Stewardship: A Scoping Review for Optimizing Patient Care and Safety with a Multidisciplinary Approach, Bethany McGowan.
"Scholarship of Drug Information and Library Sciences Instruction in Pharmacy Education: A Systematic Review”, Jason B. Reed
“Scoping Review of Engineering Systematic Reviews Methodology”, Jason B. Reed
“Whey protein supplementation and type 2 diabetes mellitus risk factors: An umbrella systematic review of randomized controlled trials”, Jason B. Reed
“Review of ChIP-seq methodology and analysis approaches”. Pete E. Pascuzzi

Professional Development & Training Sessions

Evidence Synthesis Workshop, Purdue University, May 3 and 4, 2023.

Publications

Hérubel, J.-P.V.M. (2023). University press publishing and the ecology of disciplinary fluidity: General observations. Learned Publishing, 36: 164–170.
Newlon, J. L., Reed, J. B. , Stone, R. H., Satterfield, K. G., & Meredith, A. H. (2022). Pharmacist‐prescribed hormonal contraception services: A systematic review of implementation studies. Journal of the American College of Clinical Pharmacy, 5(1), 85–98. https://doi.org/10.1002/jac5.1539
Majed, E., Ruiz, Y., Amireault, S., Reed, J. B. , Snyder, F. J., McDonough, M. H., & Blankenship, B. (2022). Examining Positive Youth Development Interventions With a Physical Activity Component to Address Bullying Among Pre- and Early Adolescents: A Critical Review of the Literature. The Journal of Early Adolescence, 42(3), 389–413. https://doi.org/10.1177/02724316211036748
Wagner, R. G., Bellisario, K. M., & Kong, N. N. (2022). Change in Doctoral Dissertation Topics in Forest Resources from US Universities Over Four Decades. Forest Science. https://doi.org/10.1093/forsci/fxac004
Hérubel, Jean-Pierre V. M. (2022). For Alma Mater: Publishing Institutional Histories of Higher Education and University Presses: Purposes, Genre and Scholarly Value.” Learned Publishing, 35, 288–291.
Marete, C., Zakharov, W. , & Mendonca, F. (2022). A systematic literature review examining the gender gap in collegiate aviation and aerospace education. Collegiate Aviation Review International, 40(1).
Haddaway, N. R., Rethlefsen, M. L., Davies, M., Glanville, J., McGowan, B. , Nyhan, K., & Young, S. (2022). A suggested data structure for transparent and repeatable reporting of bibliographic searching. Campbell Systematic Reviews, 18, e1288. https://onlinelibrary.wiley.com/doi/10.1002/cl2.1288
Connolly, G., Clark, C. M., Campbell, R. E., Byers, A. W., Reed, J. B. , & Campbell, W. W. (2022). Poultry Consumption and Human Health: How Much Is Really Known? A Systematically Searched Scoping Review and Research Perspective. Advances in Nutrition, 13(6), 2115–2124. https://doi.org/10.1093/advances/nmac074
Wang, Y., Uffelman, C. N., Bergia, R. E., Clark, C. M., Reed, J. B. , Tzu-Wen, L., ... & Campbell, W. W. (2022). Meat Consumption and Gut Microbiota: A Scoping Review of Literature and Systematic Review of Randomized Controlled Trials in Adults. Advances in Nutrition. https://doi.org/10.1016/j.advnut.2022.10.005
Harris, M., Moore, V., Barnes, M., Persha, H., Reed, J.B. , Zillich, A. (2022) Effect of pharmacy-led interventions during care transitions on patient hospital readmission: A systematic review. Journal of the American Pharmacists Association. 62(5), 1477-1498. https://doi.org/10.1016/j.japh.2022.05.017
Ekeigwe, A., McGowan, B. , Parker, L., Byrn, S., & Clase, K. (2022). Describing competency requirements for competency-based regulatory sciences education in sub-Saharan Africa – A qualitative systematic review. Pharmacy Education, 22(4), p. 42–62. https://doi.org/10.46542/pe.2022.224.4262
Hill, E., Lauren E. O’Connor, Yu Wang, Caroline M. Clark, Bethany S. McGowan , Michele R. Forman & Wayne W. Campbell (2022) Red and processed meat intakes and cardiovascular disease and type 2 diabetes mellitus: An umbrella systematic review and assessment of causal relations using Bradford Hill’s criteria, Critical Reviews in Food Science and Nutrition, https://doi.org/10.1080/10408398.2022.2123778
Schwichtenberg, A.J., Janis, A., Lindsay, A. … Yatcilla, J. (2022). Sleep in Children with Autism Spectrum Disorder: A Narrative Review and Systematic Update. Current Sleep Medicine Reports , 8, 51–61. https://doi.org/10.1007/s40675-022-00234-5

Presentations

Shao, G., Eisenberg, J.(2022, Oct 29). Mining scientific literature with Natural Language Processing to expand bibliometrics analysis. ASIS&T SIG AI Workshop 2022, Pittsburgh, PA.
Bottenberg, M., Isaacs, A., Reed, J.B., Robin, P., Shenoy, P. (2022, July 25). Stronger Together: Collaborating with Librarians to Teach Evidence Based Decision Making. AACP Pharmacy Education 2022, American Association of the Colleges of Pharmacy, Grapevine, TX.
Carlson, R., Jones, E., Martin, J., Reed, J.B., Wisniewski, C.(2022, July 25) Preventing review roadblocks: Developing high-quality and efficient pharmacy systematic reviews. AACP Pharmacy Education 2022, American Association of the Colleges of Pharmacy, Grapevine, TX.
Chapman, A. (2022, July 21). Maritime Administration Information Resources: Introduction to Its Economic, Maritime, and National Security Information Resources. FDLP Academy, U.S. Government Publishing Office, Washington, D.C.
Yatcilla, J.K., Weigand, K.J. (2022, July 7) Systematic Reviews on Human-Animal Interactions Topics: An Examination of Methodologies. [Presentation] International Society for Anthrozoology Annual Conference, Boise, ID.
Bergia III, R., Byers, A., Campbell, W., Connolly, G., Davis, E., Reed, J.B., Wang, Y. (2022, June). Whey Protein Supplementation and Type 2 Diabetes Mellitus Risk Factors: A Scoping Review of Systematic Reviews and/or Meta– Analyses of Randomized Controlled Trials. Nutrition 2022 Live Online, American Society for Nutrition.
Campbell, W., Olson, M., Reed, J.B., Anderson, N., Hill, E., Uffelman, C., Wang, Y. (2022, June). The Effects of Red Meat Intake on Inflammation Biomarkers in Humans: A Systematic Review and Meta-Analysis of Randomized Controlled Trials. Nutrition 2022 Conference, American Society of Nutrition.
Phillips, M. (2022). An Overview of a Work-in-Progress Scoping Review of Systematic Reviews in Engineering. ASEE Annual Conference & Exposition, ASE, Minneapolis, MN.
Craig, B.A., Brouder, S.M, Volenec, J.J., Cai, C., Yatcilla, J.K., Murrell, S.T., Ruark, M.D., Barford, C. (2022, May 18) A Seminar Course on Systematic Review in Agriculture and the Environment. [Poster] Conference on Applied Statistics in Agriculture and Natural Resources, Logan, UT.
Yatcilla, J.K., Walker, D. (2022, April). Modulating captive mammalian social behavior: a scoping review on olfactory treatments. International Society for Applied Ethology, 14th North American Regional Meeting.

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Open access
Published: 04 June 2024

What are medical students taught about persistent physical symptoms? A scoping review of the literature

Catie Nagel 1 ,
Chloe Queenan 1 &
Chris Burton 1

BMC Medical Education volume 24 , Article number: 618 ( 2024 ) Cite this article

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Persistent Physical Symptoms (PPS) include symptoms such as chronic pain, and syndromes such as chronic fatigue. They are common, but are often inadequately managed, causing distress and higher costs for health care systems. A lack of teaching about PPS has been recognised as a contributing factor to poor management.

The authors conducted a scoping review of the literature, including all studies published before 31 March 2023. Systematic methods were used to determine what teaching on PPS was taking place for medical undergraduates. Studies were restricted to publications in English and needed to include undergraduate medical students. Teaching about cancer pain was excluded. After descriptive data was extracted, a narrative synthesis was undertaken to analyse qualitative findings.

A total of 1116 studies were found, after exclusion, from 3 databases. A further 28 studies were found by searching the grey literature and by citation analysis. After screening for relevance, a total of 57 studies were included in the review. The most commonly taught condition was chronic non-cancer pain, but overall, there was a widespread lack of teaching and learning on PPS. Several factors contributed to this lack including: educators and learners viewing the topic as awkward, learners feeling that there was no science behind the symptoms, and the topic being overlooked in the taught curriculum. The gap between the taught curriculum and learners’ experiences in practice was addressed through informal sources and this risked stigmatising attitudes towards sufferers of PPS.

Faculties need to find ways to integrate more teaching on PPS and address the barriers outlined above. Teaching on chronic non-cancer pain, which is built on a science of symptoms, can be used as an exemplar for teaching on PPS more widely. Any future teaching interventions should be robustly evaluated to ensure improvements for learners and patients.

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Persistent Physical Symptoms (PPS) are symptoms which are disproportionate to currently recognised pathology and are common in all fields of medicine. The term encompasses single symptoms such as pain, dizziness or fatigue, and established syndromes including fibromyalgia and irritable bowel syndrome. It is increasingly understood that PPS arise from complex interactions between the brain and body [ 1 , 2 ]. While historically terms such as “medically unexplained symptoms” have been in common use, most symptoms can actually be explained [ 3 ] and PPS is a more acceptable term to patients [ 4 ].

PPS are common and present to nearly every medical specialty. They represent the primary reason for presentation in around 45% of general practice consultations and between 30 and 70% of presentations to neurology, gynaecology, and rheumatology outpatient clinics [ 5 ]. People with PPS suffer unduly in a medical system that is predisposed to ‘body part medicine,’ [ 6 ] resulting in what Balint referred to as the “collusion of anonymity.” [ 7 ] In other words, patients who pass from specialist to specialist, without any doctor taking full responsibility for holistic care. Patients with PPS consult more frequently [ 8 ] and tend to have a higher rate of referral to secondary care [ 9 ]. This is costly, both in financial terms and in terms of the emotional work for patients and clinicians [ 10 , 11 ]. Patients with PPS often have a poor experience of the health system and can be left feeling marginalised and even stigmatised [ 12 ].

Doctors find it difficult to consult and manage patients with persistent physical symptoms [ 8 ]. The absence of a common language of explanation to reconcile patients’ lived experience with doctors’ biomedical models, is particularly problematic [ 13 ]. It is plausible that difficulties may arise, or be perpetuated by, issues in each of the three domains of learning: cognitive (knowledge), psychomotor (skills) and affective (attitudes) [ 14 ].

The shifting perspectives, particularly around “medically unexplained symptoms” may account for historical uncertainty, however recent adoption of more consistent language and underlying models of symptoms mean that a common curriculum should be possible [ 15 ]. It is the authors’ experience that little teaching and learning at the undergraduate level has previously taken place on this topic. We wanted to find out if this was still the case, by reviewing the current medical education literature.

We carried out a scoping review with narrative synthesis following the approach of Arksey & O’Malley [ 16 ]. The PRISMA-ScR guidelines were used to structure reporting [ 17 ].

Research questions

The aim of the review was to explore the published literature regarding undergraduate medical teaching and learning on persistent physical symptoms. The specific research questions were:

What teaching and learning on persistent physical symptoms has been described for medical undergraduates?

What teaching methods have been used and how have these been evaluated?

Search strategy

We used a Population, Concept, and Context (PCC) framework to structure a systematic search. The population was undergraduate medical students, the concept was persistent physical symptoms, and the context was teaching and learning. A variety of synonyms were used in order to be inclusive, given the constant evolution of terms for persistent physical symptoms. We used adjacency searching and truncation methods in order to broaden the search as widely as possible and to account for different spellings of words or use of phrases across the international context. Search concepts were then combined using Boolean operators. No date range was used, so all studies before 31 March 2023 were included. Inclusion criteria were: studies relating to the teaching and learning of Persistent Physical Symptoms; medical students included in the population; available in the English language. Exclusion criteria were: studies about cancer or terminal pain without the inclusion of other forms of chronic or persistent pain; population not including medical students; letters to the editor, and papers which were not available in the English language. See Table 1 for the full search strategy.

Sources of evidence

Two authors searched for published literature in MEDLINE, PsycINFO, and Web of Science. Additionally, we searched Google and Google Scholar in order to include any grey literature or sources that had not been picked up by the previous search method. We employed citation analysis, by following backward citations from included papers and analysed the citations of any existing literature reviews.

Study selection

We used a two-stage screening process to identify eligible papers: first at title and abstract level and then at full text. This method was undertaken separately by two reviewers.

Literature reviews were excluded to avoid duplicated representation of primary data, but citations in these reviews were analysed to ensure consistent inclusion of studies and to check for any additional sources.

Charting the data: summary and synthesis

Summary findings for each full text article were charted to determine the most relevant items for extraction. This was an iterative process given the high degree of heterogeneity between the studies. Charting was conducted by two reviewers independently. Discrepancies in charting and data extraction were discussed in review meetings and a consensus was reached regarding which data to include for analysis.

Reviewers extracted descriptive data including: country of origin, whether the study was experimental or observational, the characteristics of the study participants, and whether any teaching intervention was evaluated. Other study characteristics were noted, such as the symptom or syndrome represented, as well as the type of study or intervention.

The expectation was that there would be a lack of teaching and learning on the subject of persistent physical symptoms. For this reason, the scoping review aimed to capture the greatest breadth of studies, rather than exclude studies based on quality criteria. If a teaching intervention was used, we did look at whether this was evaluated using a validated tool.

Following the extraction of descriptive data, a narrative synthesis was undertaken to identify other key findings. An inductive, iterative approach was taken in order to identify themes relating back to the research question. Manual coding was undertaken by two authors independently, followed by a discussion with all authors to arrive at an interpretation of the findings.

Search strategy, study selection, and data extraction

Searches identified 1390 unique titles. Studies were limited to English language and human participants, leading to 274 being excluded. First stage screening excluded a further 1080 studies. It was not possible to retrieve one study and six were excluded on full text. Ten further records were identified through a grey literature search using Google and Google Scholar and 18 were found through citation searching, three of which were from a previous literature review [ 15 ]. This resulted in 57 publications for inclusion in the review. See the PRISMA flow diagram in Fig. 1 for a summary of these findings.

PRISMA Diagram

Adapted from Page MJ, et al. [ 17 ]

Descriptive analysis

Study types.

The studies included for review were highly heterogeneous in their nature. 15/57 (26%) studies employed a teaching intervention, with the remaining either being observational or qualitative. 8/57 (14%) studies described or evaluated the teaching curriculum, 13/57 (22%), included an assessment of the current level of learner knowledge. 9/57 (16%) used qualitative methods with learners and 6/57 (11%) with medical educators. One literature review on assessing knowledge, perceptions and attitudes to pain was found [ 15 ]. The citations of this review were checked and the three new sources [ 18 , 19 , 20 ] were included for review. Sources within this literature review that did not meet the eligibility criteria were excluded. The findings of the review itself were noted for congruity, but not formally analysed.

Study characteristics

23/57(40%) of studies took place in USA and 13/57 (23%) in the UK. Six studies took place in Scandinavia and four in Canada, four in Australia and one in New Zealand, India, and Nigeria respectively. Some studies were based in more than one country e.g. Australia and New Zealand [ 21 ]. Publication dates ranged from 1992 to 2022. See Table 2 for a summary of the descriptive data.

Teaching and learning methods

A wide range of teaching and learning methods were discussed in the literature. These are fully described in Table 3 , but included lectures, workshops, reflective practice, and forum theatre.

Evaluation of teaching studies

Four studies used validated tools to assess learner attitudes towards patients with PPS, but only one used such a tool to evaluate a teaching intervention [ 22 ]. Morris, Rankin, and Briggs used the HC-PAIRS attitudinal questionnaire to assess learner attitudes towards patients with chronic low back pain [ 18 , 23 , 24 ]. Whereas Friedberg et al. [ 22 ] used the Chronic Fatigue Syndrome Attitudes Test (CFSAT) and paired t-test to analyse learner attitudes before and after a teaching intervention. The remaining educational interventions either did not use a validated tool for evaluation or were not formally evaluated. See Table 3 for more details.

Thematic synthesis

All studies identified a lack of teaching about persistent physical symptoms (PPS) at undergraduate level. The narrative synthesis identified four themes: An awkward problem, an absence of science, being easily overlooked, and a hidden curriculum.

An awkward problem

PPS was consistently viewed as an awkward problem. Medical educators and learners found it difficult to understand, particularly when referring to the symptoms as ‘unexplained.’ Some educators described PPS as too complex or too confusing, even ‘dangerous’ to introduce at an undergraduate level and stated the need to focus on the easily ‘explainable.’ [ 25 ] Chronic non-cancer pain was the dominant condition represented in the literature, but despite theoretical concepts of chronic pain being more established, learners found the subject challenging, even ‘unpleasant.’ [ 26 , 27 ].

The absence of science

Four studies highlighted that learners infer patients with PPS have ‘no science’ behind their symptoms. In the study by Vasanthy [ 28 ], clinical role models in Kerala were found to have a ‘nihilistic’ attitude towards people with fibromyalgia and regarded the condition as benign and unimportant. This finding was echoed by UK studies [ 29 , 30 , 31 ] where the impact of a lack of teaching and negative role modelling was evident:

“You can’t really train someone for it because there is no science behind it” [ 30 ].

One final year medical student stated that fibromyalgia was “not a medical issue” intimating that it had no place in the taught curriculum [ 29 ]. Learners understood the need to be supportive and for good communication, but only as a way of achieving relational congruence, not epistemic congruence [ 8 ]. Terminology may be important and in one study learners’ attitudes towards PPS varied depending on the diagnostic label [ 32 ]. As an example, learners thought that people with myalgic encephalopathy were less likely to recover than those with chronic fatigue syndrome [ 32 ].

Easily overlooked

Even without the overt attitudinal barriers described in some studies, PPS as a topic is overlooked in undergraduate medical education. The most common barrier was an already overloaded teaching curriculum [ 25 , 33 ]. PPS was not deemed a priority area by educational leaders and [ 33 ] even when they recognised its importance, they cited a lack of ownership of the topic and a lack of coordination between teaching specialties as a barrier to implementing teaching. This was in contrast to chronic non-cancer pain teaching which usually did have clear ownership by pain specialists and established interdisciplinary relationships [ 34 ]. The experience of learners in the clinical setting was that they were shielded from patients with PPS or directed towards patients with other more easily defined clinical problems [ 28 ].

Stigma and the hidden curriculum

Given the vacuum of formal teaching, learners were taking on stigmatised messages about sufferers of PPS, frequently from role models in the clinical placement setting. Stenhoff and colleagues described a cycle of negativity created by the lack of teaching on the subject of chronic fatigue, which resulted in negative behaviour by clinical role models, in turn perpetuating negative attitudes in the next generation of learners [ 31 ]. Whilst learners recognised the problematic nature of the attitudes towards people with PPS, they lacked the tools to challenge negative stereotypes [ 29 , 30 , 35 ]. Learners experienced a mismatch between formal teaching on the topic and their experience on placement, where these conditions were frequently encountered. They addressed the gap by seeking information about PPS from informal sources, such as their own or their families’ experiences or from the internet [ 36 ]. This lack of explicit teaching and the influence of informal sources has been termed by some authors as the ‘hidden curriculum’ [ 29 , 30 , 31 , 36 ] and this has had a significant impact on learners’ attitudes towards people suffering with PPS.

Suggestions for improvement: relationship to domains of learning

The findings of the narrative synthesis map onto Bloom’s revised three domains of learning [ 14 ].

Knowledge (cognitive)

A number of studies demonstrate success in teaching on the topic of chronic non-cancer pain. Teaching interventions tended to include a foundation of knowledge such as teaching on pain mechanisms, pharmacology, and pain management [ 37 , 38 ]. Such theory-driven interventions led to improved scores on assessment [ 39 ]. Methods of teaching should be considered in the explicitly taught curriculum. Authors recommended an integrated approach [ 40 , 41 ] and one which drew on the skills and knowledge from a variety of disciplines [ 37 , 42 ]. Curriculum mapping was recommended by Howman et al. [ 33 ] in order to identify ways in which this integration could be implemented. The need for an holistic approach which emphasises the importance of empathy [ 41 ] and the biopsychosocial was also widely recognised [ 43 , 44 , 45 , 46 ]. Learners cited a lack of assessment as an indicator that PPS was either unimportant or uncommon [ 29 , 33 ] and therefore any teaching intervention should include assessment in order to drive learning and engagement.

Skills (psychomotor)

Learners valued the addition of skills-based teaching and engaged best with teaching that was experiential [ 47 ] and included either patients with PPS or simulated patients [ 45 , 48 , 49 ]. In one study the focus of the teaching was on interactive, practical teaching for emotionally demanding consultations and the skills taught in such a programme could be transferable to the PPS context [ 49 ]. Approaches to help learners find a common language of explanation [ 13 ] will not only bridge the epistemic gap between clinicians and patients [ 8 ], but should give learners greater confidence and satisfaction in consultations where PPS are the focus.

Attitudes (affective) and the role of reflection

Reflection is a key transferable skill that graduates should acquire as part of their undergraduate training [ 50 ]. Both learners and educators voiced a great deal of anxiety regarding teaching and managing patients with PPS. Some authors utilised reflective logs and visual art as a way of teaching about chronic pain [ 51 ] and learners valued the deep insights provided by this method. Skills in reflection might help to ameliorate the negative emotions felt by learners, especially if combined with a taught framework that helps them understand concepts such as internal bias and cognitive dissonance [ 52 ].

Summary of main findings

This review found that teaching on persistent physical symptoms in undergraduate medical education is inconsistent and incomplete. We identified four important themes: an awkward problem, the absence of science, easily overlooked, and the hidden curriculum. Mapping these to teaching and learning domains provides a coherent framework for undergraduate teaching of these common conditions. Where teaching does take place, this is more frequently on the topic of chronic non-cancer pain. A number of studies have demonstrated improved knowledge [ 39 ], skills [ 49 ], and attitudes [ 51 ] as a result of this teaching [ 34 , 47 ], but high quality evaluation of such teaching and learning is lacking.

Strengths and limitations

This scoping review has addressed a gap in the literature. By undertaking a search of three databases, the grey literature, and citation analysis, a wide range of sources were included for initial screening. Two researchers independently undertook the search strategy before comparing findings which has helped to ensure a robust and systematic approach. Narrative synthesis was undertaken by three researchers, one with expertise in the field of persistent physical symptoms.

The majority of the studies identified were from the USA and UK. Papers that were not accessible in English were excluded, which may explain this finding. Where teaching and learning evaluations had taken place, this was on a small scale usually within one institution. Only one study [ 22 ] used a validated tool to evaluate the efficacy of the teaching intervention.

Implications for practice, policy, and research

There is a lack of teaching on PPS in undergraduate medical education. As a result, medical graduates are ill-equipped to recognise, consult for, and manage this group of conditions. Given the prevalence of PPS across medical specialties this is a priority area that needs to be addressed, whilst acknowledging the barriers that exist to implementation.

The solutions offered up in the literature include the need to consider whole-person care, in order to avoid fragmentation and the “collusion of anonymity” [ 7 ] described above. For this reason, teaching on PPS should be integrated into the core curriculum and draw on a variety of disciplines.

A better understanding of the science behind PPS [ 1 , 2 ] is needed for both educators and learners. There is also a need to move learners beyond reductionist models of communication skills towards more theory-driven approaches of person-centredness, as identified by Bansal [ 53 ]. We need to convey to learners that skilled communication is not about platitudes, but can make a difference to recovery and addresses the current epistemic gap between clinicians and their patients [ 8 , 13 ].

Future educational research should focus on the most effective methods to improve the knowledge base of both educators and students and how best to evaluate the success of future teaching interventions. Skills in person-centred communication and explanation [ 3 ] need to be taught, alongside those in reflection and challenging prejudice.

We identified four important themes which underpin the challenges of teaching medical undergraduates about persistent physical symptoms. Educational faculties need to find ways to integrate teaching into current programmes and work around the existing barriers to successful implementation and evaluation of teaching about these common and limiting conditions. Examples of successful teaching on chronic non-cancer pain were found in the literature. These tended to articulate the science behind symptoms and often included experiential elements. Such examples should be used to inform an approach for teaching about other forms of PPS. Importantly, robust evaluation that accounts for the complexity of the taught environment is needed to ensure our teaching is making a difference, both for our learners and the patients they will go on to encounter.

Data availability

All data generated or analysed during this study are included in this published article and its supplementary information files.

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Acknowledgements

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CN is undertaking an In Practice Fellowship which has been funded by the NIHR (Reference number NIHR301019). This is an educational award and does not fund direct research costs.

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Nagel, C., Queenan, C. & Burton, C. What are medical students taught about persistent physical symptoms? A scoping review of the literature. BMC Med Educ 24 , 618 (2024). https://doi.org/10.1186/s12909-024-05610-z

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Barriers and facilitators to mental health treatment access and engagement for LGBTQA+ people with psychosis: a scoping review protocol

Cláudia C. Gonçalves ORCID: orcid.org/0000-0001-6767-0920 1 ,
Zoe Waters 2 ,
Shae E. Quirk 1 ,
Peter M. Haddad 1 , 3 ,
Ashleigh Lin 4 ,
Lana J. Williams 1 &
Alison R. Yung 1 , 5

Systematic Reviews volume 13 , Article number: 143 ( 2024 ) Cite this article

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The prevalence of psychosis has been shown to be disproportionately high amongst sexual and gender minority individuals. However, there is currently little consideration of the unique needs of this population in mental health treatment, with LGBTQA+ individuals facing barriers in accessing timely and non-stigmatising support for psychotic experiences. This issue deserves attention as delays to help-seeking and poor engagement with treatment predict worsened clinical and functional outcomes for people with psychosis. The present protocol describes the methodology for a scoping review which will aim to identify barriers and facilitators faced by LGBTQA+ individuals across the psychosis spectrum in help-seeking and accessing mental health support.

A comprehensive search strategy will be used to search Medline, PsycINFO, Embase, Scopus, LGBTQ+ Source, and grey literature. Original studies of any design, setting, and publication date will be included if they discuss barriers and facilitators to mental health treatment access and engagement for LGBTQA+ people with experiences of psychosis. Two reviewers will independently screen titles/abstracts and full-text articles for inclusion in the review. Both reviewers will then extract the relevant data according to pre-determined criteria, and study quality will be assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. Key data from included studies will be synthesised in narrative form according to the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews.

The results of this review will provide a comprehensive account of the current and historical barriers and facilitators to mental healthcare faced by LGBTQA+ people with psychotic symptoms and experiences. It is anticipated that the findings from this review will be relevant to clinical and community services and inform future research. Findings will be disseminated through publication in a peer-reviewed journal and presented at conferences.

Scoping review registration

This protocol is registered in Open Science Framework Registries ( https://doi.org/10.17605/OSF.IO/AT6FC ).

Peer Review reports

The prevalence of psychotic disorders in the general population has been estimated to be around 0.27–0.75% [ 1 , 2 ], with the lifetime prevalence of ever having a psychotic experience being estimated at 5.8% [ 3 ]. However, rates of psychotic symptoms and experiences are disproportionately high amongst LGBTQA+ populations, with non-heterosexual individuals estimated to be 1.99–3.75 times more likely to experience psychosis than their heterosexual peers [ 4 , 5 , 6 , 7 ]. Additionally, it has been estimated that transgender or gender non-conforming (henceforth trans) individuals are 2.46–49.7 times more likely than their cisgender peers (i.e. individuals whose gender identity is the same as their birth registered sex) to receive a psychotic disorder diagnosis [ 8 , 9 ]. The increased rates of psychotic experiences noted amongst gender and sexual minorities may be explained by evidence indicating that LGBTQA+ people are also exposed to risk factors for psychosis at a far greater rate than members of the general population, such as childhood adversity [ 10 , 11 , 12 ], minority stress [ 13 ], discrimination [ 14 ], and stigma [ 15 , 16 ]. Furthermore, there is added potential for diagnostic biases leading to over-diagnosing psychosis in gender diverse individuals, whose gender expression and dysphoria may be pathologized by mental health service providers [ 8 ].

Despite these concerning statistics, there is very little research examining the experiences of LGBTQA+ people with psychosis, and limited consideration of the unique needs these individuals may have in accessing and engaging with mental health services. While timely access to treatment has consistently been associated with better symptomatic and functional outcomes for people with psychosis [ 17 , 18 ], there are often delays to treatment initiation which are worsened for LGBTQA+ individuals [ 19 , 20 ]. These individuals face additional barriers to accessing adequate mental health support compared to cisgender/heterosexual people [ 19 ] and may need to experiment with several mental health services before finding culturally competent care [ 20 ]. This in turn may lead to longer duration of untreated psychosis. Additionally, there seems to be a lack of targeted support for this population from healthcare providers, with LGBTQA+ individuals with serious mental health concerns reporting higher rates of dissatisfaction with psychiatric services than their cisgender and heterosexual counterparts [ 7 , 14 , 21 ]. However, the extent of these differences varies across contexts [ 22 ], potentially due to improved education around stigma and LGBTQA+ issues within a subset of mental health services.

Nonetheless, stigma remains one of the highest cited barriers to help-seeking for mental health problems, particularly with regard to concerns around disclosure [ 23 ], which can be particularly challenging for people experiencing psychosis [ 24 , 25 ]. Stigma stress in young people at risk for psychosis is associated with less positive attitudes towards help-seeking regarding both psychiatric medication and psychotherapy [ 26 ], potentially partly due to fears of judgement and being treated differently by service providers [ 27 ]. This issue may be compounded for people who also belong to minoritized groups [ 23 , 28 ], particularly as LGBTQA+ individuals have reported experiencing frequent stigma and encountering uninformed staff when accessing mental healthcare [ 7 , 29 ]. Furthermore, stigma-fuelled hesitance to access services may be heightened for trans people [ 30 ] whose identities have historically been pathologized and conflated with experiences of psychosis [ 31 ].

Even when individuals manage to overcome barriers to access support, there are added challenges to maintaining adequate treatment engagement. In a large online study, half of trans and nearly one third of LGB participants reported having stopped using mental health services in the past because of negative experiences related to their gender identity or sexuality [ 20 ]. This can be particularly problematic as experiences of stigma predict poorer medication adherence in psychosis [ 32 ] which subsequently multiplies the risk for relapse and suicide [ 33 ]. While no research to date has explored non-adherence rates in people with psychosis who are LGBTQA+, concerns around suicidality are heightened for individuals who are gender and sexuality diverse [ 34 , 35 , 36 ].

Generally, there is rising demand for mental healthcare that specifically addresses the needs of gender and sexual minority individuals and promotes respect for diversity, equity, and inclusion [ 29 , 37 ]. This is particularly salient as positive relationships with staff are associated with better medication adherence for people with psychosis [ 38 ] and healthcare providers with LGBTQA+-specific mandates have demonstrated higher satisfaction rates for LGBTQA+ individuals [ 20 ]. Mental health services need to adapt treatment options to acknowledge minority stress factors for those with stigmatised identities and, perhaps more importantly, how these intersect and interact to increase inequalities in people from minoritized groups accessing and benefiting from treatment [ 37 , 39 ].

Additionally, gender affirming care needs to be recognised as an important facet of mental health treatment for many trans individuals, as it is associated with positive outcomes such as improvements in quality of life and psychological functioning [ 40 , 41 , 42 ] and reductions in psychiatric symptom severity and need for subsequent mental health treatment [ 8 , 43 ]. While there are additional barriers in access to gender affirming care for individuals with psychosis, this treatment has shown success in parallel with treatment to address psychosis symptom stabilisation [ 19 , 44 ]. The importance of affirmation is echoed by the finding that many negative experiences of LGBTQA+ participants with mental health services could be avoided simply by respecting people’s pronouns and using gender-neutral language [ 20 ].

To ensure timely access to appropriate treatment for LGBTQA+ people with psychosis, there is a need for improved understanding of the factors which challenge and facilitate help-seeking and engagement with mental health support. A preliminary search of Google Scholar, Medline, the Cochrane Database of Systematic Reviews, and PROSPERO was conducted and revealed no existing or planned reviews exploring benefits and/or obstacles to mental health treatment specific to this population. Therefore, the proposed review seeks to comprehensively search and appraise the existing literature to identify and summarise a range of barriers and facilitators to adequate mental health support faced by LGBTQA+ people with experiences of psychosis. This will allow for the mapping of the types of evidence available and identification of any knowledge gaps. Moreover, we hope to guide future decision-making in mental healthcare to improve service accessibility for LGBTQA+ individuals with psychosis and to set the foundations for future research that centres this marginalised population. Based on published guidance [ 45 , 46 , 47 ], a scoping review methodology was identified as the most appropriate approach to address these aims.

Selection criteria

This scoping review protocol has been developed in compliance with the JBI Manual for Evidence Synthesis [ 48 ] and, where relevant, the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist [ 49 ] (see Additional file 1). In the event of protocol amendments, the date, justification, and description for each amendment will be provided.

Due to the limited literature around the topic of this review, any primary original study design, setting, and publication date will be considered for inclusion. Publications written in English will be included, and articles in other languages may be considered pending time and cost constraints around translation. Publications will be excluded if the full text is not available upon request from authors.

The PCC (Population, Concept, Context) framework was used to develop the inclusion criteria for this scoping review:

This review will include individuals of any age who are LGBTQA+ and have had experiences of psychosis. For the purposes of this review, ‘LGBTQA+ individuals’ will be broadly defined as any individual that is not heterosexual and/or cisgender or anyone who engages in same-gender sexual behaviour. Studies may include participants who are cisgender and heterosexual if they separately report outcomes for LGBTQA+ individuals. Within this review, the term ‘psychosis’ includes (i) any diagnosis of a psychotic disorder, such as schizophrenia spectrum disorders, mood disorders with psychotic features, delusional disorders, and drug-induced psychotic disorders, (ii) sub-threshold psychotic symptoms, such as those present in ultra-high risk (UHR), clinical high risk (CHR), or at risk mental state (ARMS) individuals, and (iii) any psychotic-like symptoms or experiences. Studies may include participants with multiple diagnoses if they separately report outcomes for individuals on the psychosis spectrum.

This review will include publications which discuss potential barriers and/or facilitators to mental health help-seeking and/or engagement with mental health treatment. ‘Barriers’ will be operationalised as any factors which may delay or prevent individuals from accessing and engaging with appropriate mental health support. These may include lack of mental health education, experienced or internalised stigma, experiences of discrimination from health services, and lack of inclusivity in health services. ‘Facilitators’ will be operationalised as any factors which may promote timely help-seeking and engagement with sources of support. These may include improved access to mental health education, positive sources of social support, and welcoming and inclusive services. Mental health help-seeking will be broadly defined as any attempt to seek and access formal or informal support to address a mental health concern related to experiences of psychosis (e.g. making an initial appointment with a service provider, seeking help from a friend). Mental health treatment engagement will be broadly defined as adherence and active participation in the treatment that is offered by a source of support (e.g. attending scheduled appointments, taking medication as prescribed, openly communicating with service providers).

This review may include research encompassing any setting in which mental healthcare is provided. This is likely to include formal healthcare settings such as community mental health teams or inpatient clinics as well as informal settings such as LGBTQA+ spaces or informal peer support. Studies will be excluded if they focus exclusively on physical health treatment.

Search strategy

Database searches will be conducted in Medline, PsycINFO, Embase, Scopus, and LGBTQ+ Source. The full search strategy for this protocol is available (see Additional file 2). This strategy has been collaboratively developed and evaluated by a scholarly services health librarian. Searches will include subject headings relevant to each database and title/abstract keywords relating to three main concepts: (i) LGBTQA+ identity, (ii) experiences of psychosis, and (iii) mental health treatment. Keywords for each concept will be combined using the Boolean operator ‘OR’, and the three concepts will be combined using ‘AND’. This search strategy was appropriately translated for each of the selected databases. There will be no limitations on language or publication date at this stage to maximise the breadth of the literature captured. Publications returned from these searches will be exported to EndNote. Searches will be re-run prior to the final analysis to capture any newly published studies.

The database searches will be supplemented by searching the grey literature as per the eligibility criteria detailed above. These may include theses and dissertations, conference proceedings, reports from mental health services, and policy documents from LGBTQA+ groups. Google and Google Scholar will be searched using a combination of clauses for psychosis (Psychosis OR psychotic OR schizophrenia OR schizoaffective), treatment (treatment or “help-seeking”), and queer identity. The latter concept will have three clauses for three separate searches, with one including broad queer identity (LGBT), one specific to non-heterosexual individuals (gay OR lesbian OR homosexual OR bisexual OR queer OR asexual), and one specific to trans individuals (transgender OR transsexual OR transexual OR “non-binary” OR “gender minority”). Additionally, reference lists and citing literature will be manually searched for each paper included in the review to capture any articles and policy documents not previously identified.

Data selection

Search results will be imported into Covidence using EndNote, and duplicates will be eliminated. Titles and abstracts will be screened by the first and second authors according to pre-defined screening criteria, which will be discussed by the authors and piloted prior to screening. These criteria will consider whether the articles included LGBTQA+ participants with experiences of psychosis (as operationalised above) in relation to mental health help-seeking and/or treatment. Full texts of relevant articles will then be obtained and screened by the first and second reviewer in accordance with the full inclusion and exclusion criteria after initial piloting to maximise inter-rater reliability. Decisions on inclusion and exclusion will be blinded and recorded on Covidence. Potential discrepancies will be resolved through discussion, and when consensus cannot be reached, these will be resolved by the supervising author. The process of study selection will be documented using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram [ 50 ].

Data extraction

Data extraction will be performed independently by two reviewers using Covidence. Prior to beginning final extraction, both reviewers will independently pilot the extraction tool using a sample of five included studies and discuss any necessary changes. Information extracted is planned to include the following: title, author name(s), year of publication, country in which the study was conducted, study design, sample size, population of focus (i.e. sexual minorities, gender minorities, or both), sample demographics (i.e. age, gender identity, and sexual orientation), setting (e.g. early intervention service, community mental health team, etc.), psychosis characteristics (e.g. diagnoses included, severity of symptoms, etc.), type of treatment (e.g. cognitive behavioural therapy, antipsychotic medication, etc.), and any barriers and/or facilitators identified according to the aforementioned operationalised definitions. Disagreements will be resolved through discussion between the two reviewers and, when necessary, final decisions will be made by a senior supervisor. Once extracted, information will be recorded in Excel. Lead authors of papers will be contacted by the primary review author in cases where there is missing or insufficient data.

Quality assessment

Due to the expected heterogeneity in the types of studies that may be included in this review (e.g. qualitative studies, randomised controlled trials, case control studies, case reports), the relevant revised Joanna Briggs Institute (JBI) critical appraisal checklists [ 51 ] will be used to assess risk of bias and study quality for each study design. Two reviewers will independently use these checklists to assess each paper that is included following the full-text screening. If there are discrepancies in article ratings, these will be resolved through discussion between the two authors. If no consensus is reached, discrepancies will be resolved by a senior supervisor. In line with the scoping nature of this review, low-quality studies will not be excluded from the synthesis.

Evidence synthesis

Data from included studies will be synthesised using a narrative synthesis approach in accordance with the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews [ 52 ]. A preliminary descriptive synthesis will be conducted by tabulating the extracted data elements from each study alongside quality assessment results and developing an initial description of the barriers and facilitators to (1) accessing and (2) engaging with mental health support that are identified in the literature. This initial synthesis will then be interrogated and refined to contextualise these barriers and facilitators in the setting, population, and methodology of each study to form the basis for an interpretative synthesis.

This review will not use a pre-existing thematic framework to categorise barriers and facilitators as it is expected that the factors identified will not neatly fit into existing criteria. Instead, these will be conceptualised according to overarching themes as interrelated factors, so that potentially complex interactions between barriers and facilitators within and across relevant studies may be explored through concept mapping. If most of the studies included are qualitative, there may also be scope for a partial meta-synthesis. To avoid oversimplifying the concept of ‘barriers and facilitators’ (see criticism by Bach-Mortensen & Verboom [ 53 ]), this data synthesis will be followed by a critical reflection of the findings through the lens of the socio-political contexts which may give rise to the barriers and facilitators identified, exploring the complexities necessary for any changes to be implemented in mental health services.

If the extracted data indicate that gender minority and sexual minority individuals experience unique or different barriers and/or facilitators to each other, these population groups will be analysed separately as opposed to findings being generalised across the LGBTQA+ spectrum. Furthermore, if there is scope to do so, analyses may be conducted to investigate how perceived barriers and facilitators for this population may have changed over time (i.e. according to publication date) as definitions of psychosis evolve and LGBTQA+ individuals gain visibility in clinical services.

The proposed review will add to the literature around mental health treatment for LGBTQA+ people with psychosis. It will provide a thorough account of the barriers and facilitators to accessing and engaging with support faced by this population and may inform future research and clinical practice.

In terms of limitations, this review will be constrained by the existing literature and may therefore not be sufficiently comprehensive in reflecting the barriers and facilitators experienced by subgroups within the broader LGBTQA+ community. Additionally, although broad inclusion criteria are necessary to capture the full breadth of research conducted in this topic, included studies are likely to be heterogeneous and varied in terms of their methodology and population which may complicate data synthesis.

Nonetheless, it is anticipated that the findings from this review will provide the most comprehensive synthesis to date of the issues driving low help-seeking and treatment engagement in people across the psychosis spectrum who are LGBTQA+. This review will likely also identify gaps in the literature which may inform avenues for future research, and the factors identified in this review will be considered in subsequent research by the authors.

Additionally, findings will be relevant to healthcare providers that offer support to people with psychosis who may have intersecting LGBTQA+ identities as well as LGBTQA+ organisations which offer support to LGBTQA+ people who may be experiencing distressing psychotic experiences. These services are likely to benefit from an increased awareness of the factors which may improve or hinder accessibility for these subsets of their target populations. Therefore, results from this review may inform decision-making around the implementation of service-wide policy changes.

The findings of this review will be disseminated through the publication of an article in a peer-reviewed journal and presented at relevant conferences in Australia and/or internationally. Additionally, the completed review will form part of the lead author’s doctoral thesis.

Availability of data and materials

Not applicable for this protocol.

Abbreviations

At risk mental state

Clinical high risk for psychosis

Joanna Briggs Institute

Lesbian, gay, and bisexual

Lesbian, gay, bisexual, transgender, queer or questioning, asexual or aromantic, and more

Population, Concept, Context

Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols

Ultra-high risk for psychosis

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Acknowledgements

The authors would like to acknowledge the support of Ms Olivia Larobina, Scholarly Services Librarian (STEMM) at Deakin University, in the development of the search strategy.

CCG is funded by a Deakin University Postgraduate Research (DUPR) Scholarship. ZW is funded by a University of Western Australia Research Training Program (RTP) Scholarship. AL is supported by a National Health and Medical Research Council (NHMRC) Emerging Leaders Fellowship (2010063). LJW is supported by a NHMRC Emerging Leaders Fellowship (1174060). ARY is supported by a NHMRC Principal Research Fellowship (1136829). The funding providers had no role in the design and conduct of the study, or in the preparation, review, or approval of this manuscript.

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Additional file 1. prisma-p 2015 checklist. completed prisma-p checklist for this systematic review protocol., 13643_2024_2566_moesm2_esm.docx.

Additional file 2. Search Strategy. Detailed search strategy for this systematic review, including search terms and relevant controlled vocabulary terms for each included database.

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Patient experiences: a qualitative systematic review of chemotherapy adherence

Amineh Rashidi 1 ,
Susma Thapa 1 ,
Wasana Sandamali Kahawaththa Palliya Guruge 1 &
Shubhpreet Kaur 1

BMC Cancer volume 24 , Article number: 658 ( 2024 ) Cite this article

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Adherence to chemotherapy treatment is recognized as a crucial health concern, especially in managing cancer patients. Chemotherapy presents challenges for patients, as it can lead to potential side effects that may adversely affect their mobility and overall function. Patients may sometimes neglect to communicate these side effects to health professionals, which can impact treatment management and leave their unresolved needs unaddressed. However, there is limited understanding of how patients’ experiences contribute to improving adherence to chemotherapy treatment and the provision of appropriate support. Therefore, gaining insights into patients’ experiences is crucial for enhancing the accompaniment and support provided during chemotherapy.

This review synthesizes qualitative literature on chemotherapy adherence within the context of patients’ experiences. Data were collected from Medline, Web of Science, CINAHL, PsychINFO, Embase, Scopus, and the Cochrane Library, systematically searched from 2006 to 2023. Keywords and MeSH terms were utilized to identify relevant research published in English. Thirteen articles were included in this review. Five key themes were synthesized from the findings, including positive outlook, receiving support, side effects, concerns about efficacy, and unmet information needs. The review underscores the importance for healthcare providers, particularly nurses, to focus on providing comprehensive information about chemotherapy treatment to patients. Adopting recommended strategies may assist patients in clinical practice settings in enhancing adherence to chemotherapy treatment and improving health outcomes for individuals living with cancer.

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Introduction

Cancer can affect anyone and is recognized as a chronic disease characterized by abnormal cell multiplication in the body [ 1 ]. While cancer is prevalent worldwide, approximately 70% of cancer-related deaths occur in low- to middle-income nations [ 1 ]. Disparities in cancer outcomes are primarily attributed to variations in the accessibility of comprehensive diagnosis and treatment among countries [ 1 , 2 ]. Cancer treatment comes in various forms; however, chemotherapy is the most widely used approach [ 3 ]. Patients undergoing chemotherapy experience both disease-related and treatment-related adverse effects, significantly impacting their quality of life [ 4 ]. Despite these challenges, many cancer patients adhere to treatment in the hope of survival [ 5 ]. However, some studies have shown that concerns about treatment efficacy may hinder treatment adherence [ 6 ]. Adherence is defined as “the extent to which a person’s behaviour aligns with the recommendations of healthcare providers“ [ 7 ]. Additionally, treatment adherence is influenced by the information provided by healthcare professionals following a cancer diagnosis [ 8 ]. Patient experiences suggest that the decision to adhere to treatment is often influenced by personal factors, with family support playing a crucial role [ 8 ]. Furthermore, providing adequate information about chemotherapy, including its benefits and consequences, can help individuals living with cancer gain a better understanding of the advantages associated with adhering to chemotherapy treatment [ 9 ].

Recognizing the importance of adhering to chemotherapy treatment and understanding the impact of individual experiences of chemotherapy adherence would aid in identifying determinants of adherence and non-adherence that are modifiable through effective interventions [ 10 ]. Recently, systematic reviews have focused on experiences and adherence in breast cancer [ 11 ], self-management of chemotherapy in cancer patients [ 12 ], and the influence of medication side effects on adherence [ 13 ]. However, these reviews were narrow in scope, and to date, no review has integrated the findings of qualitative studies designed to explore both positive and negative experiences regarding chemotherapy treatment adherence. This review aims to synthesize the qualitative literature on chemotherapy adherence within the context of patients’ experiences.

This review was conducted in accordance with the Joanna Briggs Institute [ 14 ] guidelines for systemic review involving meta-aggregation. This review was registered in PROSPERO (CRD42021270459).

Search methods

The searches for peer reviewed publications in English from January 2006-September 2023 were conducted by using keywords, medical subject headings (MeSH) terms and Boolean operators ‘AND’ and ‘OR’, which are presented in the table in Appendix 1 . The searches were performed in a systematic manner in core databases such including Embase, Medline, PsycINFO, CINAHL, Web of Science, Cochrane Library, Scopus and the Joanna Briggs Institute (JBI). The search strategy was developed from keywords and medical subject headings (MeSH) terms. Librarian’s support and advice were sought in forming of the search strategies.

Study selection and inclusion criteria

The systematic search was conducted on each database and all articles were exported to Endnote and duplicates records were removed. Then, title and abstract of the full text was screened by two independent reviewers against the inclusion criteria. For this review, populations were patients aged 18 and over with cancer, the phenomenon of interest was experiences on chemotherapy adherence and context was considered as hospitals, communities, rehabilitation centres, outpatient clinics, and residential aged care. All peer-reviewed qualitative study design were also considered for inclusion. Studies included in this review were classified as primary research, published in English since 2006, some intervention implemented to improve adherence to treatment. This review excluded any studies that related to with cancer and mental health condition, animal studies and grey literature.

Quality appraisal and data extraction

The JBI Qualitative Assessment and Review Instrument for qualitative studies was used to assess the methodological quality of the included studies, which was conducted by the primary and second reviewers independently. There was no disagreement between the reviews. The qualitative data on objectives, study population, context, study methods, and the phenomena of interest and findings form the included studies were extracted.

Data synthesis

The meta-aggregation approach was used to combine the results with similar meaning. The primary and secondary reviewers created categories based on the meanings and concept. These categories were supported by direct quotations from participants. The findings were assess based on three levels of evidence, including unequivocal, credible, and unsupported [ 15 , 16 ]. Findings with no quotation were not considered for synthesis in this review. The categories and findings were also discussed by the third and fourth reviewers until a consensus was reached. The review was approved by the Edith Cowan University Human Research Ethics Committee (2021–02896).

Study inclusion

A total of 4145 records were identified through a systematic search. Duplicates ( n = 647) were excluded. Two independent reviewers conducted screening process. The remaining articles ( n = 3498) were examined for title and abstract screening. Then, the full text screening conducted, yielded 13 articles to be included in the final synthesis see Appendix 2 .

Methodological quality of included studies

All included qualitative studies scored between 7 and 9, which is displayed in Appendix 3 . The congruity between the research methodology and the research question or objectives, followed by applying appropriate data collection and data analysis were observed in all included studies. Only one study [ 17 ] indicated the researcher’s statement regarding cultural or theoretical perspectives. Three studies [ 18 , 19 , 20 ] identified the influence of the researcher on the research and vice-versa.

Characteristics of included studies

Most of studies conducted semi-structured and in-depth interviews, one study used narrative stories [ 19 ], one study used focus group discussion [ 21 ], and one study combined focus group and interview [ 22 ] to collect data. All studies conducted outpatient’s clinic, community, or hospital settings [ 17 , 18 , 19 , 20 , 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. The study characteristics presented in Appendix 4 .

Review findings

Eighteen findings were extracted and synthesised into five categories: positive outlook, support, side effects, concern about efficacy and unmet information needs.

Positive outlook

Five studies discussed the link between positivity and hope and chemotherapy adherence [ 19 , 20 , 23 , 27 , 28 ]. Five studies commented that feeling positive and avoid the negativity and worry could encourage people to adhere in their mindset chemotherapy: “ I think the main thing for me was just keeping a positive attitude and not worrying, not letting myself worry about it ” [ 20 ]. Participants also considered the positive thoughts as a coping mechanism, that would help them to adhere and complete chemotherapy: “ I’m just real positive on how everything is going. I’m confident in the chemo, and I’m hoping to get out of her soon ” [ 23 ]. Viewing chemotherapy as part of their treatment regimen and having awareness of negative consequences of non-adherence to chemotherapy encouraged them to adhere chemotherapy: “ If I do not take medicine, I do not think I will be able to live ” [ 28 ]. Adhering chemotherapy was described as a survivor tool which helped people to control cancer-related symptoms: “ it is what is going to restore me. If it wasn’t this treatment, maybe I wasn’t here talking to you. So, I have to focus in what he is going to give me, life !” [ 27 ]. Similarly, people accepted the medical facts and prevent their life from worsening; “ without the treatment, it goes the wrong way. It is hard, but I have accepted it from the beginning, yes. This is how it is. I cannot do anything about it. Just have to accept it ” [ 19 ].

Finding from six studies contributed to this category [ 20 , 21 , 23 , 24 , 25 , 29 ]. Providing support from families and friends most important to the people. Receiving support from family members enhanced a sense responsibility towards their families, as they believed to survive for their family even if suffered: “ yes, I just thought that if something comes back again and I say no, then I have to look my family and friends in the eye and say I could have prevented it, perhaps. Now, if something comes back again, I can say I did everything I could. Cancer is bad enough without someone saying: It’s your own fault!!” [ 29 ]. Also, emotional support from family was described as important in helping and meeting their needs, and through facilitation helped people to adhere chemotherapy: “ people who genuinely mean the support that they’re giving […] just the pure joy on my daughter’s face for helping me. she was there day and night for me if I needed it, and that I think is the main thing not to have someone begrudgingly looking after you ” [ 20 ]. Another study discussed the role family, friends and social media as the best source of support during their treatment to adhere and continue “ I have tons of friends on Facebook, believe it or not, and it’s amazing how many people are supportive in that way, you know, just sending get-well wishes. I can’t imagine going through this like 10 years ago whenever stuff like that wasn’t around ” [ 23 ]. Receiving support from social workers was particularly helpful during chemotherapy in encouraging adherence to the chemotherapy: “ the social worker told me that love is courage. That was a huge encouragement, and I began to encourage myself ” [ 25 ].

Side effects

Findings from five studies informed this category [ 17 , 21 , 22 , 25 , 26 ]. Physical side effects were described by some as the most unpleasure experience: “ the side effects were very uncomfortable. I felt pain, fatigue, nausea, and dizziness that limited my daily activities. Sometimes, I was thinking about not keeping to my chemotherapy schedule due to those side effect ” [ 17 ]. The impact of side effects affected peoples’ ability to maintain their independence and self-care: “ I couldn’t walk because I didn’t have the energy, but I wouldn’t have dared to go out because the diarrhoea was so bad. Sometimes I couldn’t even get to the toilet; that’s very embarrassing because you feel like you’re a baby ” [ 26 ]. Some perceived that this resulted in being unable to perform independently: “ I was incredibly weak and then you still have to do things and you can’t manage it ” [ 22 ]. These side effect also decreased their quality of life “ I felt nauseated whenever I smelled food. I simply had no appetite when food was placed in front of me. I lost my sense of taste. Food had no taste anymore ” [ 25 ]. Although, the side effects impacted on patients´ leisure and free-time activities, they continued to undertake treatment: “ I had to give up doing the things I liked the most, such as going for walks or going to the beach. Routines, daily life in general were affected ” [ 21 ].

Concern about efficacy

Findings form four studies informed this category [ 17 , 18 , 24 , 28 ]. Although being concerned about the efficacy of the chemotherapy and whether or not chemotherapy treatment would be successful, one participant who undertook treatment described: “the efficacy is not so great. It is said to expect about 10% improvement, but I assume that it declines over time ” [ 28 ]. People were worried that such treatment could not cure their cancer and that their body suffered more due to the disease: “ I was really worried about my treatment effectiveness, and I will die shortly ” [ 17 ]. There were doubts expressed about remaining the cancer in the body after chemotherapy: “ there’s always sort of hidden worries in there that whilst they’re not actually taking the tumour away, then you’re wondering whether it’s getting bigger or what’s happening to it, whether it’s spreading or whatever, you know ” [ 24 ]. Uncertainty around the outcome of such treatment, or whether recovering from cancer or not was described as: “it makes you feel confused. You don’t know whether you are going to get better or else whether the illness is going to drag along further” [ 18 ].

Unmet information needs

Five studies contributed to this category [ 17 , 21 , 22 , 23 , 26 ]. The need for adequate information to assimilate information and provide more clarity when discussing complex information were described. Providing information from clinicians was described as minimal: “they explain everything to you and show you the statistics, then you’re supposed to take it all on-board. You could probably go a little bit slower with the different kinds of chemo and grappling with these statistics” [ 26 ]. People also used the internet search to gain information about their cancer or treatments, “I’ve done it (consult google), but I stopped right away because there’s so much information and you don’t know whether it’s true or not ” [ 21 ]. The need to receive from their clinicians to obtain clearer information was described as” I look a lot of stuff up online because it is not explained to me by the team here at the hospital ” [ 23 ]. Feeling overwhelmed with the volume of information could inhibit people to gain a better understanding of chemotherapy treatment and its relevant information: “ you don’t absorb everything that’s being said and an awful lot of information is given to you ” [ 22 ]. People stated that the need to know more information about their cancer, as they were never dared to ask from their clinicians: “ I am a low educated person and come from a rural area; I just follow the doctor’s advice for my health, and I do not dare to ask anything” [ 17 ].

The purpose of this review was to explore patient’s experiences about the chemotherapy adherence. After finalizing the searches, thirteen papers were included in this review that met the inclusion criteria.

The findings of the present review suggest that social support is a crucial element in people’s positive experiences of adhering to chemotherapy. Such support can lead to positive outcomes by providing consistent and timely assistance from family members or healthcare professionals, who play vital roles in maintaining chemotherapy adherence [ 30 ]. Consistent with our study, previous research has highlighted the significant role of family members in offering emotional and physical support, which helps individuals cope better with chemotherapy treatment [ 31 , 32 ]. However, while receiving support from family members reinforces individuals’ sense of responsibility in managing their treatment and their family, it also instils a desire to survive cancer and undergo chemotherapy. One study found that assuming self-responsibility empowers patients undergoing chemotherapy, as they feel a sense of control over their therapy and are less dependent on family members or healthcare professionals [ 33 ]. A qualitative systematic review reported that support from family members enables patients to become more proactive and effective in adhering to their treatment plan [ 34 ]. This review highlights the importance of maintaining a positive outlook and rational beliefs as essential components of chemotherapy adherence. Positive thinking helps individuals recognize their role in chemotherapy treatment and cope more effectively with their illness by accepting it as part of their treatment regimen and viewing it as a tool for survival. This finding is supported by previous studies indicating that positivity and positive affirmations play critical roles in helping individuals adapt to their reality and construct attitudes conducive to chemotherapy adherence [ 35 , 36 ]. Similarly, maintaining a positive mindset can foster more favourable thoughts regarding chemotherapy adherence, ultimately enhancing adherence and overall well-being [ 37 ].

This review identified side effects as a significant negative aspect of the chemotherapy experience, with individuals expressing concerns about how these side effects affected their ability to perform personal self-care tasks and maintain independent living in their daily lives. Previous studies have shown that participants with a history of chemotherapy drug side effects were less likely to adhere to their treatment regimen due to worsening symptoms, which increased the burden of medication side effects [ 38 , 39 ]. For instance, cancer patients who experienced minimal side effects from chemotherapy were at least 3.5 times more likely to adhere to their treatment plan compared to those who experienced side effects [ 40 ]. Despite experiencing side effects, patients were generally willing to accept and adhere to their treatment program, although one study in this review indicated that side effects made some patients unable to maintain treatment adherence. Side effects also decreased quality of life and imposed restrictions on lifestyle, as seen in another study where adverse effects limited individuals in fulfilling daily commitments and returning to normal levels of functioning [ 41 ]. Additionally, unmet needs regarding information on patients’ needs and expectations were common. Healthcare professionals were considered the most important source of information, followed by consultation with the internet. Providing information from healthcare professionals, particularly nurses, can support patients effectively and reinforce treatment adherence [ 42 , 43 ]. Chemotherapy patients often preferred to base their decisions on the recommendations of their care providers and required adequate information retention. Related studies have highlighted that unmet needs among cancer patients are known factors associated with chemotherapy adherence, emphasizing the importance of providing precise information and delivering it by healthcare professionals to improve adherence [ 44 , 45 ]. Doubts about the efficacy of chemotherapy treatment, as the disease may remain latent, were considered negative experiences. Despite these doubts, patients continued their treatment, echoing findings from a study where doubts regarding efficacy were identified as a main concern for chemotherapy adherence. Further research is needed to understand how doubts about treatment efficacy can still encourage patients to adhere to chemotherapy treatment.

Strengths and limitation

The strength of this review lies in its comprehensive search strategy across databases to select appropriate articles. Additionally, the use of JBI guidelines provided a comprehensive and rigorous methodological approach in conducting this review. However, the exclusion of non-English studies, quantitative studies, and studies involving adolescents and children may limit the generalizability of the findings. Furthermore, this review focuses solely on chemotherapy treatment and does not encompass other types of cancer treatment.

Conclusion and practical implications

Based on the discussion of the findings, it is evident that maintaining a positive mentality and receiving social support can enhance chemotherapy adherence. Conversely, experiencing treatment side effects, concerns about efficacy, and unmet information needs may lead to lower adherence. These findings present an opportunity for healthcare professionals, particularly nurses, to develop standardized approaches aimed at facilitating chemotherapy treatment adherence, with a focus on providing comprehensive information. By assessing patients’ needs, healthcare professionals can tailor approaches to promote chemotherapy adherence and improve the survival rates of people living with cancer. Raising awareness and providing education about cancer and chemotherapy treatment can enhance patients’ understanding of the disease and its treatment options. Utilizing videos and reading materials in outpatient clinics and pharmacy settings can broaden the reach of educational efforts. Policy makers and healthcare providers can collaborate to develop sustainable patient education models to optimize patient outcomes in the context of cancer care. A deeper understanding of individual processes related to chemotherapy adherence is necessary to plan the implementation of interventions effectively. Further research examining the experiences of both adherent and non-adherent patients is essential to gain a comprehensive understanding of this topic.

Data availability

The datasets used and/or analysed during the current study available from the corresponding author on reasonable request. on our submission system as well.

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Amineh Rashidi, Susma Thapa, Wasana Sandamali Kahawaththa Palliya Guruge & Shubhpreet Kaur

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First author (AR) and second author (ST) conceived the review and the second author oversight for all stages of the review provided by the second author. All authors (AR), (ST), (WG) and (SK) undertook the literature search. Data extraction, screening the included papers and quality appraisal were undertaken by all authors (AR), (ST), (WG) and (SK). First and second authors (AR) and (ST) analysed the data and wrote the first draft of the manuscript and revised the manuscript and all authors (AR), (ST), (WG) and (SK) approved the final version of the manuscript.

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The review was approved by the Edith Cowan University Human Research Ethics Committee (2021–02896). A proposal for the systematic review was assessed by the Edith Cowan University Human Research Ethics Committee and deemed not appropriate for full ethical review. However, a Data Management Plan (2021-02896-RASHIDI) was approved and monitored as part of this procedure. Raw data was extracted from the published manuscripts and authors could not identify individual participants during or after this process.

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Rashidi, A., Thapa, S., Kahawaththa Palliya Guruge, W. et al. Patient experiences: a qualitative systematic review of chemotherapy adherence. BMC Cancer 24 , 658 (2024). https://doi.org/10.1186/s12885-024-12353-z

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DOI : https://doi.org/10.1186/s12885-024-12353-z

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PDF STARTING A NARRATIVE SYNTHESIS
in the synthesis. At review stage, authors will make further decisions about how best to organise and present the data based on the actual review findings. ... 2 A copy of the guidelines (Popay et al (2006) Guidance on the conduct of narrative synthesis in systematic reviews) can be obtained from Libby Osborn via email at [email protected] ...
PDF Guidance on the Conduct of Narrative Synthesis in Systematic Reviews
bridged. Telling a trustworthy story is at the heart of narrative synthesis. 1.2 Narrative synthesis, narrative reviews and evidence synthesis 'Narrative' synthesis' refers to an approach to the systematic review and synthesis of findings from multiple studies that relies primarily on the use of words and text to summarise and explain the
Guidance on Conducting a Systematic Literature Review
Similar to textual narrative synthesis, a scoping review (Arksey and O'Malley 2005) ... For literature reviews to be reliable and independently repeatable, the process of systematic literature review must be reported in sufficient detail (Okoli and Schabram 2010). This will allow other researchers to follow the same steps described and arrive ...
How to Write a Systematic Review: A Narrative Review
In this study, the steps for a systematic review such as research question design and identification, the search for qualified published studies, the extraction and synthesis of information that pertain to the research question, and interpretation of the results are presented in details. This will be helpful to all interested researchers.
Narrative Reviews: Flexible, Rigorous, and Practical
Introduction. Narrative reviews are a type of knowledge synthesis grounded in a distinct research tradition. They are often framed as non-systematic, which implies that there is a hierarchy of evidence placing narrative reviews below other review forms. 1 However, narrative reviews are highly useful to medical educators and researchers. While a systematic review often focuses on a narrow ...
Full article: Narrative approaches to systematic review and synthesis
Narrative methods of synthesis can be used to synthesise both quantitative and qualitative studies and have been used when the experimental and quasi-experimental studies included in a systematic review are not sufficiently similar for a meta-analysis to be appropriate (Mays et al. Citation 2005a). Narrative synthesis is used in different ways.
Narrative Synthesis
A typology of literature reviews. Narrative' synthesis' refers to an approach to the systematic review and synthesis of findings from multiple studies that relies primarily on the use of words and text to summarise and explain the findings of the synthesis.
PDF Guidance on the conduct of narrative synthesis in systematic review
of narrative synthesis to a systematic review of effects. •To compare the results and conclusions of this guidance-led narrative synthesis with those of a published Cochrane meta-analysis of the same group of studies. Methods • Initially, we undertook a review of the methodological literature to develop draft guidance on the conduct of
(PDF) Guidance on the conduct of narrative synthesis in systematic
1.2 Narrative synthesis, narrative reviews and evide nce synthesis 'Narrative' synthesis' refers to an approach to the systematic review and synthesi s of findings from
Improving Conduct and Reporting of Narrative Synthesis of Quantitative
Narrative synthesis of quantitative data (NS) is a method commonly used in systematic reviews where it may not be appropriate, or possible, to meta-analyse estimates of intervention effects. A common criticism of NS is that it is opaque and subject to author interpretation, casting doubt on the trustworthiness of a review's conclusions.
(PDF) Narrative Synthesis: Considerations and challenges
Due to variability in study designs (qualitative, quantitative, and mixed methods), we completed a narrative synthesis of the results. This is a systematic approach for undertaking a review where ...
A systematic literature review and narrative synthesis on the risks of
Synthesis. Then a narrative synthesis was performed to synthesize the findings of the different studies. Because of the range of very different studies that were included in this systematic review, we have decided that a narrative synthesis constitutes the best instrument to synthesise the findings of the studies.
An Introduction to Writing Narrative and Systematic Reviews
The process of writing up a review can be distilled to a sequence of five simple steps. The first four steps are similar but different for a narrative review compared with a systematic review, reflecting the key differences between these review types (Box 1) [10]. The fifth step is common to both types of review.
Reporting of narrative synthesis in systematic reviews of public health
Narrative synthesis of quantitative data in public health reviews is often inadequate. Reporting of methods is limited, and available guidance is rarely referred to. Links between the data and the narrative summary are often unclear. This lack of transparency prevents assessment of the reliability of review findings, and threatens the credibility of systematic reviews that use narrative synthesis.
PDF Narrative synthesis and thematic analysis in systematic literature reviews
Criticism on narrative reviews •Narrative synthesis does not rest on an authoritative body of knowledge or on reliable and rigorous techniques developed and tested over time (Rodgers et al. 2016) •There is 'a possibility that systematic reviews adopting a narrative approach to synthesis will be prone to bias, and may generate unsound
Narrative approaches to systematic review and synthesis of evidence for
reviews might include and the range of methods available for their synthesis. Keywords: systematic review; qualitative synthesis; evidence-based policy; narrative synthesis; development effectiveness 1. Introduction Over the last decade, there has been an increased focus on enhancing the use of evidence
Synthesis without meta-analysis (SWiM) in systematic reviews ...
In systematic reviews that lack data amenable to meta-analysis, alternative synthesis methods are commonly used, but these methods are rarely reported. This lack of transparency in the methods can cast doubt on the validity of the review findings. The Synthesis Without Meta-analysis (SWiM) guideline has been developed to guide clear reporting in reviews of interventions in which alternative ...
The Difference Between Narrative Review and Systematic Review
The main objective of a systematic review is to formulate a well-defined research question and use qualitative and quantitative methods to analyze all the available evidence attempting to answer the question. In contrast, narrative reviews can address one or more questions with a much broader scope.
Do the elderly have a voice? Advance care planning discussions with
Design and setting: Systematic literature review and narrative synthesis. Method: Articles that related to frail or older individuals and either advance care plans or discussions on end-of-life care were included. Studies of specific conditions or that focused on prognosis, capacity, or resuscitation decisions were excluded.
The relationship between leadership styles and organisational
Therefore, this review may miss some relevant research insights mentioned in the literature that discussed innovation or leadership separately not combined.,This study contributes to the existing body of research on leadership and innovation by extensively discussing the role of various leadership styles in determining organisational innovation.
The relationship between leadership styles and organisational
The relationship between leadership styles and organisational innovation: A systematic literature review and narrative synthesis March 2020 European Journal of Innovation Management ahead-of-print ...
A systematic literature review and narrative synthesis on the risks of
A systematic literature review and narrative synthesis on the risks of medical discharge letters for patients' safety BMC Health Serv Res. 2019 Mar 12 ... Methods: The research question was answered with a systematic literature research and results were summarized narratively. A literature search in the databases PubMed and Cochrane Library for ...
How to Conduct a Systematic Review: A Narrative Literature Review
Our goal with this paper is to conduct a narrative review of the literature about systematic reviews and outline the essential elements of a systematic review along with the limitations of such a review. Keywords: systematic reviews, meta-analysis, narrative literature review, prisma checklist. A literature review provides an important insight ...
Knowledge Synthesis and Systematic Reviews
Home > Welcome to Purdue University Libraries > Research in Libraries and School of Information Studies > Knowledge Synthesis and Systematic Reviews. ... A systematic literature review examining the gender gap in collegiate aviation and aerospace education. ... A Narrative Review and Systematic Update. Current Sleep Medicine Reports, 8, 51-61 ...
What are medical students taught about persistent physical symptoms? A
The authors conducted a scoping review of the literature, including all studies published before 31 March 2023. ... independently undertook the search strategy before comparing findings which has helped to ensure a robust and systematic approach. Narrative synthesis was undertaken by three researchers, one with expertise in the field of ...
Health co-benefits and trade-offs of carbon pricing: a narrative synthesis
This review provides a narrative structured synthesis of the health impacts of carbon pricing. We identified 58 relevant publications of which all were modelling studies. We classify review findings into policy-relevant categories, synthesizing information on how carbon pricing affects health outcomes when implemented in different contexts, in ...
Barriers and facilitators to mental health treatment access and
Both reviewers will then extract the relevant data according to pre-determined criteria, and study quality will be assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. Key data from included studies will be synthesised in narrative form according to the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews.
Challenges
Circumpolar Indigenous People, such as the Sámi, confront significant challenges stemming from environmental shifts and interrelated issues, profoundly affecting their mental health. Nonetheless, they possess invaluable knowledge and capabilities to navigate and adapt to these transformations. This review aims to investigate peer-reviewed scientific literature, exploring the nexus between ...
Happiness in urban green spaces: A systematic literature review
A systematic literature search was conducted on the Web of Science and Scopus between 2013 and 2023. A physical or subjective measure of urban green space and a measure of happiness served as the main inclusion criteria. ... The inclusion criteria for the review were met by a total of 57 studies, which received a meticulous narrative synthesis ...
Patient experiences: a qualitative systematic review of chemotherapy
This review synthesizes qualitative literature on chemotherapy adherence within the context of patients' experiences. Data were collected from Medline, Web of Science, CINAHL, PsychINFO, Embase, Scopus, and the Cochrane Library, systematically searched from 2006 to 2023. ... one study used narrative stories , one study used focus group ...

Which review is that? A guide to review types

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A systematic literature review and narrative synthesis on the risks of medical discharge letters for patients’ safety

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Synthesis without meta-analysis (SWiM) in systematic reviews: reporting guideline

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