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

BMC Health Services Research

Research

Lijiao Yan¹  Chen Shen¹  Jianping Liu¹  Zeyu Yu¹  Xuejing Jin¹  Jiale Hu²  Karen Graham³  Shelly-Anne Li⁴  Sarah E. Scott⁵ 

[1] Centre for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, China;Department of Nurse Anesthesia, Virginia Commonwealth University, Richmond, VG, USA;Healthcare Improvement Scotland, Gyle Square 1 South Gyle Crescent, Edinburgh, Scotland;Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada;National Institute for Health and Care Excellence (NICE), Manchester, UK;

关键词: Clinical practice guidelines;    Patient version of guidelines;    Patient engagement;    Patient involvement;    Guideline development;    Chinese mainland;   

DOI  :  10.1186/s12913-023-09591-5

 received in 2023-02-23, accepted in 2023-05-23,  发布年份 2023

来源: Springer

【 摘 要 】

ObjectiveTo 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.MethodsWe 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.ResultsThe 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 implicationsOur 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.

【 授权许可】

CC BY   
© The Author(s) 2023

【 图 表 】

Fig. 3