Dataset Information

The perceptions and experience of developing patient (version of) guidelines: a descriptive qualitative study with Chinese guideline developers.

ABSTRACT:

Objective

To understand developers' perception of patient (versions of) guidelines (PVGs), and identify challenges during the PVG development, with the aim to inform methodological guidance for future PVG development.

Methods

We used a descriptive qualitative design. Semi-structured interviews were conducted virtually from December 2021 to April 2022, with a purposive sampling of 12 PVG developers from nine teams in China. Conventional and directed content analysis was used for data analysis.

Results

The interviews identified PVG developers' understanding of PVGs, their current practice experience, and the challenges of developing PVGs. Participants believed PVGs were a type of health education material for patients; therefore, it should be based on patient needs and be understandable and accessible. Participants suggested that PVGs could be translated/adapted from one or several clinical practice guidelines (CPG), or developed de novo (i.e., the creation of an entirely new PVG with its own set of research questions that are independent of existing CPGs). Participants perceived those existing methodological guidelines for PVG development might not provide clear instructions for PVGs developed from multiple CPGs and from de novo development. Challenges to PVG development include (1) a lack of standardized and native guidance on developing PVGs; (2) a lack of standardized guidance on patient engagement; (3) other challenges: no publicly known and trusted platform that could disseminate PVGs; concerns about the conflicting interests with health professionals.

Conclusions and practice implications

Our study suggests clarifying the concept of PVG is the primary task to develop PVGs and carry out related research. There is a need to make PVG developers realize the roles of PVGs, especially in helping decision-making, to maximize the effect of PVG. It is necessary to develop native consensus-based guidance considering developers' perspectives regarding PVGs.

SUBMITTER: Yan L

PROVIDER: S-EPMC10367247 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature

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Publications

The perceptions and experience of developing patient (version of) guidelines: a descriptive qualitative study with Chinese guideline developers.

Yan Lijiao L Hu Jiale J Yu Zeyu Z Li Shelly-Anne SA Graham Karen K Scott Sarah E SE Shen Chen C Jin Xuejing X Liu Jianping J

BMC health services research 20230724 1

<h4>Objective</h4>To understand developers' perception of patient (versions of) guidelines (PVGs), and identify challenges during the PVG development, with the aim to inform methodological guidance for future PVG development.<h4>Methods</h4>We used a descriptive qualitative design. Semi-structured interviews were conducted virtually from December 2021 to April 2022, with a purposive sampling of 12 PVG developers from nine teams in China. Conventional and directed content analysis was used for da ...[more]

PMID: 37488555

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Project description:BackgroundA variety of systems have been developed to grade evidence and develop recommendations based on the available evidence. However, development of guidelines for medical tests is especially challenging given the typical indirectness of the evidence; direct evidence of the effects of testing on patient important outcomes is usually absent. We compared grading systems for medical tests on how they use evidence in guideline development.MethodsWe used a systematic strategy to look for grading systems specific to medical tests in PubMed, professional guideline websites, via personal correspondence, and handsearching back references of key articles. Using the Appraisal of Guidelines for Research and Evaluation (AGREE) instrument as a starting point, we defined two sets of characteristics to describe these systems: methodological and process ones. Methodological characteristics are features relating to how evidence is gathered, appraised, and used in recommendations. Process characteristics are those relating to the guideline development process. Data were extracted in duplicate and differences resolved through discussion.ResultsTwelve grading systems could be included. All varied in the degree to which methodological and process characteristics were addressed. Having a clinical scenario, identifying the care pathway and/or developing an analytical framework, having explicit criteria for appraising and linking indirect evidence, and having explicit methodologies for translating evidence into recommendations were least frequently addressed. Five systems at most addressed these, to varying degrees of explicitness and completeness. Process wise, features most frequently addressed included involvement of relevant professional groups (8/12), external peer review of completed guidelines (9/12), and recommendations on methods for dissemination (8/12). Characteristics least often addressed were whether the system was piloted (3/12) and funder information (3/12).ConclusionsFive systems for grading evidence about medical tests in guideline development addressed to differing degrees of explicitness the need for and appraisal of different bodies of evidence, the linking of such evidence, and its translation into recommendations. At present, no one system addressed the full complexity of gathering, assessing and linking different bodies of evidence.

Project description:Background: Many organisations in Australia undertake systematic reviews to inform development of evidence-based guidelines or would like to do so. However, the substantial resources required to produce systematic reviews limit the feasibility of evidence-based approaches to guideline development. We are working with Australian guideline developers to design, build and test systems that make creating evidence-based guidelines easier and more efficient. Methods: To understand the evidence needs of guideline developers and to inform the development of potential tools and services, we conducted 16 semi-structured interviews with Australian guideline developers. Developers were involved in different types of guidelines, represented both new and established guideline groups, and had access to widely different levels of resources. Results: All guideline developers recognised the importance of having access to timely evidence to support their processes, but were frequently overwhelmed by the scale of this task. Groups developing new guidelines often underestimated the time, expertise and work involved in completing searching and screening. Many were grappling with the challenge of updating and were keen to explore alternatives to the blanket updating of the full guideline. Horizon-scanning and evidence signalling were seen as providing more pragmatic approaches to updating, although some were wary of challenges posed by receiving evidence on a too-frequent basis. Respondents were aware that new technologies, such as machine learning, offered potentially large time and resource savings. Conclusions: As well as the constant challenge of managing financial constraints, Australian guideline developers seeking to develop clinical guidelines face several critical challenges. These include acquiring appropriate methodological expertise, investing in information technology, coping with the proliferation of research output, feasible publication and dissemination options, and keeping guidance up to date.

Project description:BackgroundGuideline producers are increasingly producing versions of guidelines for the public, and knowledge of what the public want from them is also increasing. The aim of this study was to user test a patient version of a SIGN clinical guideline that was designed based on preliminary work for the DECIDE project. SIGN is the leading national guideline producer in Scotland.MethodsPeople with a diagnosis of glaucoma and non-professional carers were recruited from across Scotland. User testing was conducted using a think-aloud protocol method. Each session was conducted by one interviewer and one observer. All sessions were recorded and transcribed. The data was analysed, problems with the guideline were identified and resolved and key findings were themed using a user experience model.ResultsThirteen user testing sessions with people with glaucoma and one with a carer were conducted. Key facilitators of desirability and usability identified include clear branding as a patient version and a clearly described purpose, audience and contents page. Other facilitators include a "friendly" tone which is achieved by the use of colour, quotes, icons, simple language and charts, and brief chunked text. The value and usefulness of the patient guideline was influenced by its ability to: inform the public, link information to actions, and empower people in their interaction with healthcare professionals. Participants were disappointed by the lack of information on treatment in the patient version, which was outside its scope. Information on the evidence based guideline production process and the involvement of appropriately skilled professionals was key to the credibility of the guideline. Lack of awareness of guidelines and guideline producing bodies, is a potentially serious threat to findability/accessibility.ConclusionsIt is important for guideline producers to maximise the user experience of the public when they access patient versions of guidelines, particularly given the current low level of access and awareness. One size does not fit all and guideline producers need to strike a balance between keeping the patient version simple and providing sufficient information to facilitate shared decision making and empower the public. Guideline producers may find the results of this study useful in designing their own patient versions.

Project description:BackgroundClinical practice guidelines have become increasingly widely used to guide quality improvement of clinical practice. Qualitative research may be a useful way to improve the quality and implementation of guidelines. The methodology for qualitative evidence used in guidelines development is worthy of further research.MethodsA comprehensive search was made of WHO, NICE, SIGN, NGC, RNAO, PubMed, Embase, Web of Science, CNKI, Wanfang, CBM, and VIP from January 1, 2011 to February 25, 2020. Guidelines which met IOM criteria and were focused on clinical questions using qualitative research or qualitative evidence, were included. Four authors extracted significant information and entered this onto data extraction forms. The Appraisal of Guidelines for Research and Evaluation (AGREE II) tool was used to evaluate the guidelines' quality. The data were analyzed using SPSS version 17.0 and R version 3.3.2.ResultsSixty four guidelines were identified. The overall quality of the guidelines was high (almost over 60%). Domain 1 (Scope and Purpose) was ranked the highest with a median score of 83% (IQ 78-83). Domain 2 (Stakeholder involvement) and Domain 5 (Applicability) were ranked the lowest with median scores of 67% (IQ 67-78) and 67% (IQ 63-73) respectively. 20% guidelines used qualitative research to identify clinical questions. 86% guidelines used qualitative evidence to support recommendations (mainly based on primary studies, a few on qualitative evidence synthesis). 19% guidelines applied qualitative evidence when considering facilitators and barriers to recommendations' implementation. 52% guideline developers evaluated the quality of the primary qualitative research study using the CASP tool or NICE checklist for qualitative studies. No guidelines evaluated the quality of qualitative evidence synthesis to formulate recommendations. 17% guidelines presented the level of qualitative research using the grade criteria of evidence and recommendation in different forms such as I, III, IV, very low. 28% guidelines described the grades of the recommendations supported by qualitative and quantitative evidence. No guidelines described the grade of recommendations only supported by qualitative evidence.ConclusionsThe majority of the included guidelines were high-quality. Qualitative evidence was mainly used to identify clinical questions, support recommendations, and consider facilitators and barriers to implementation of recommendations'. However, more attention needs to be paid to the methodology. For example, no experts proficient in qualitative research were involved in guideline development groups, no assessment of the quality of qualitative evidence synthesis was included and there was lack of details reported on the level of qualitative evidence or grade of recommendations.

Project description:BackgroundSeveral guideline organizations produce patient versions of clinical practice guidelines (PVGs) which translate recommendations into simple language. A former study of our working group revealed that few guideline organizations publish their methods used to develop PVGs. Clear definitions of PVGs do not prevail and their purposes often remain unclear. We aimed to explore experts' perspectives on developing, disseminating and implementing PVGs to discuss and incorporate these experiences when consenting on methodological guidance and further improving PVGs.MethodsWe conducted 17 semi-structured telephone interviews with international experts working with PVGs from September 2021 through January 2022. We conducted the interviews in English or German, they were recorded and transcribed verbatim. We utilized Mayring's qualitative content analysis with MAXQDA software to analyze the data.ResultsIn two interviews two participants were interviewed at the same time. This resulted in a total of 19 participants from 16 different organizations and eight different countries participated. Most were female (16/19) and their experience in working with PVGs ranged from 1 to 20 years. All follow methodological standards when developing PVGs, but the extent of these standards and their public accessibility differs. Aims and target groups of PVGs vary between organizations. Facilitators for developing PVGs are working with a multidisciplinary team, financial resources, consultation processes and a high-quality underlying CPG. Facilitators for disseminating and implementing PVGs are using various strategies. Barriers, on the other hand, are the lack of these factors. All participants mentioned patient involvement as a key aspect in PVG development.ConclusionThe steps in the PVG development process are largely similar across the countries. Focus is placed on the involvement of patients in the development process, although the extent of participation varies. The experts collectively attribute great importance to PVGs overall, but in order to constantly adapt to medical progress and changing conditions, the focus in the future may be more on formats like living guidelines. Although there are different views on the mandatory development of PVGs, there is a consistent call for more transparency regarding the methodology used for PVGs.

Dataset Information

The perceptions and experience of developing patient (version of) guidelines: a descriptive qualitative study with Chinese guideline developers.

Objective

Methods

Results

Conclusions and practice implications

Publications

The perceptions and experience of developing patient (version of) guidelines: a descriptive qualitative study with Chinese guideline developers.

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