A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals

Abstract

Background: Research objectives should be focused toward advancing knowledge that has meaningful impact on health. However, research agendas are mostly driven by the health care community, with limited input from patients. Aims: In this study, prioirities of uncertainties for the management of fibromyalgia (FM) that could propel future research were identified by a defined process using the James Lind Alliance Priority Setting Partnership (JLA-PSP) methodology. Methods: As a first step, a survey was distributed across Canada that engaged patients, caregivers, and health care professionals to provide narrative input to eight open-ended questions regarding FM care. Responses were thematically condensed and synthesized into an initial list of 43 uncertainties used to guide a comprehensive literature search. Questions already effectively addressed in the literature were excluded, leaving 25 uncertainties that were ranked during a one-day consensus workshop. Results: Three broad themes emerged: the value of personalized targeted treatment and subgrouping of patients; the efficacy of various self-management strategies and educational initiatives; and identification of the ideal health care setting to provide FM care. Opioids and cannabinoids were the only specific pharmacologic interventions ranked as needing further research. Conclusions: The prioritized questions highlight the importance of recognizing the heterogeneity of FM symptoms, the need for a personalized treatment approach, and a better understanding of the value of self-management strategies. This is the first study that uses an established and transparent methodology to engage all FM stakeholders to help inform researchers and funding bodies of clinically relevant research priorities.

Cocreating research priorities for anorexia nervosa: The Canadian Eating Disorder Priority Setting Partnership

“…The JLA provides a rigorous and transparent five‐step procedure for developing a Priority Setting Partnership (PSP). To date, over 100 PSPs have been conducted around the world, including recent Canadian PSPs on fibromyalgia, kidney cancer, and dementia (Bethell et al, ; Fitzcharles et al, ; Jones et al, ).…”

Learning from our mistakes

“…There were 550 responders to the survey but in only 73% of cases could they be identified as either "patient" or "clinician." Thirteen responders were identified as "organization members," another 14 were labeled as "caregivers," and in 122 responders there was "no identification" (Table 2 in Fitzcharles et al 3 ). It appears, nevertheless, that even responses from the latter three groups were considered in subsequent analyses.…”

“…Ten priorities for research were eventually identified (Table 4 in Fitzcharles et al 3 ). Each of these is briefly labeled as a source of uncertainty and several questions are cited for clarification under the heading of "sample narrative."…”

“…2 The current issue of this journal includes a paper by Fitzcharles et al, who used the JLA methodology to explore the indications for potential research in the treatment of fibromyalgia. 3 Fibromyalgia (FM) is a common condition characterized by widespread pain, fatigue, nonrefreshing sleep, and cognitive difficulties. It disables many and is often poorly understood by both patients and health care professionals.…”

“…4 To date its treatment has been only modestly successful. 4,5 The article by Fitzcharles et al 3 illustrates the difficulties in reaching a useful and clear agreement between patients and health care professionals for a treatment research agenda. The work, the time, and the number of people involved in this project were considerable, but the validity and originality of the results presented appear questionable.…”