A proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines

IF 2.9 2区医学 Q2 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Patient Education and Counseling Pub Date : 2025-02-19 DOI:10.1016/j.pec.2025.108708

Anabel Granja-Dominguez , Carmen Martin-Gomez , Juan Darío Ortigoza-Escobar , Rocío Rodriguez-Lopez , Lourdes Gonzalez-Bermudez , Stefania Dantone , Stefano Pavanello , Juan Antonio Blasco-Amaro

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Abstract

Objective

Develop a proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines (CPGs) based on a systematic review of qualitative literature.

Methods

A systematic review was conducted using medical subject heading-term and text-word search strategies to identify qualitative literature on patient living with rare diseases (PLWRD) involvement during CPG development and in research studies. Databases were searched for literature in English or Spanish, published until April 2024.

Results

64 publications were included in this review, underscoring the critical importance of PLWRD involvement in the CPGs development. The studies reported different strategies to facilitate the involvement of patients and collect relevant information from the patient community. The Guideline Development Group and the Core Writing Group should include representatives of the patient community, closely communicating with a patient advisory group to facilitate a broader patient perspective. Patient representatives should be engaged throughout all stages of CPG development, from defining the scope to implementation.

Conclusion

This proposal offers a framework for actively involve PLWRD throughout the CPGs development process, aiming to produce more inclusive and practical recommendations that better reflect real-world patient needs.

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来源期刊

Patient Education and Counseling 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.60

自引率

11.40%

发文量

384

审稿时长

46 days

期刊介绍： Patient Education and Counseling is an interdisciplinary, international journal for patient education and health promotion researchers, managers and clinicians. The journal seeks to explore and elucidate the educational, counseling and communication models in health care. Its aim is to provide a forum for fundamental as well as applied research, and to promote the study of organizational issues involved with the delivery of patient education, counseling, health promotion services and training models in improving communication between providers and patients.