Patient Version of Guideline for Fibromyalgia (2025 Edition)

Abstract

Objective: To develop an evidence-based patient version of guideline (PVG) for fibromyalgia, aiming to improve patients’ understanding of disease symptoms and therapeutic options and to enhance their self-management abilities.

Methods: Following the World Health Organization Handbook for Guideline Development (2014), a multidisciplinary working group was established, including patient representatives, physicians, pharmacists, nurses, and methodologists. The process comprised (a) systematic retrieval of clinical practice guidelines and expert consensus statements to establish the evidence base; (b) integration of large language models (LLMs) with expert review to identify and refine key patient-centered concerns; (c) a three-round Delphi consensus guided by the Grading of Recommendations Assessment, Development and Evaluation approach to finalize clinical questions and formulate recommendations; and (d) evaluation of understandability using the Patient Education Materials Assessment Tool for Print Materials (PEMAT-P).

Results: The final PVG covers 13 clinical questions across seven domains, including disease awareness, diagnostic evaluation, pharmacological and non-pharmacological interventions, and long-term management. All recommendations were rated as strong. The guideline emphasizes the importance of pharmacological management, emotional regulation, and exercise in the comprehensive management of fibromyalgia. The PEMAT-P assessment showed an understandability score of 100%.

Conclusions: Developed collaboratively by a multidisciplinary team and patient representatives, this PVG is based on 13 evidence-based fibromyalgia guidelines. Combining LLMs with expert review enhanced question generation and readability. The PVG provides a practical and accessible tool to support early self-management in fibromyalgia.

Keywords

Development and Evaluation (GRADE) / fibromyalgia / Grading of Recommendations Assessment / large language models / patient version of guideline

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2025 The Author(s). Journal of Evidence-Based Medicine published by Chinese Cochrane Center, West China Hospital of Sichuan University and John Wiley & Sons Australia, Ltd.