Mary-Ann Fitzcharles1, Mary Brachaniec2, Lynn Cooper3, Ruth Dubin4, Trudy Flynn5, Kerstin Gerhold6, Winfried Häuser7,8, Katherine Cowan9, Andreas Laupacis10, Renee Marleau11, Marc Milot12, Nicole Szajcz-Keller13, Janice Sumpton14, Zach Walsh15, Hani El-Gabalawy13. 1. Division of Rheumatology and Alan Edwards Pain Management Unit, McGill University Health Centre, Montreal, QC, Canada. 2. Riverview, NB, Canada. 3. Kitchener, ON, Canada. 4. Department of Family Medicine, Queen's University, Kingston, Canada. 5. Seabright, NS, Canada. 6. Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Canada. 7. Department of Internal Medicine 1, Klinikum Saarbrücken, Saarbrücken, Germany. 8. Department of Psychosomatic Medicine and Psychotherapy, Technische Universität München, Munich, Germany. 9. James Lind Alliance, London, England. 10. Li Ka Shing Knowledge Institute of St. Michael's Hospital, Toronto and Faculty of Medicine, University of Toronto, Toronto, ON, Canada. 11. Terrasse-Vaudreuil, QC. 12. APAS Laboratory, Montréal, QC, Canada. 13. Canadian Institutes for Health Research, Institute of Musculoskeletal Health and Arthritis, Winnipeg, MB, Canada. 14. Department of Pharmacy, London Health Sciences Centre, London, ON, Canada. 15. Department of Psychology, University of British Columbia, Kelowna, BC, Canada.
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.
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.
Authors: Frederick Wolfe; Daniel J Clauw; Mary-Ann Fitzcharles; Don L Goldenberg; Winfried Häuser; Robert S Katz; Philip Mease; Anthony S Russell; I Jon Russell; John B Winfield Journal: J Rheumatol Date: 2011-02-01 Impact factor: 4.666
Authors: Jacob N Ablin; Howard Amital; Michael Ehrenfeld; Valerie Aloush; Ori Elkayam; Pnina Langevitz; Dror Mevorach; Reuven Mader; Tali Sachar; Daniela Amital; Dan Buskila Journal: Harefuah Date: 2013-12
Authors: Philippe Lucas; Zach Walsh; Kim Crosby; Robert Callaway; Lynne Belle-Isle; Robert Kay; Rielle Capler; Susan Holtzman Journal: Drug Alcohol Rev Date: 2015-09-14
Authors: Mary-Ann Fitzcharles; Peter A Ste-Marie; Don L Goldenberg; John X Pereira; Susan Abbey; Manon Choinière; Gordon Ko; Dwight E Moulin; Pantelis Panopalis; Johanne Proulx; Yoram Shir Journal: J Rheumatol Date: 2013-07-01 Impact factor: 4.666
Authors: Mary-Ann Fitzcharles; Yoram Shir; Jacob N Ablin; Dan Buskila; Howard Amital; Peter Henningsen; Winfried Häuser Journal: Evid Based Complement Alternat Med Date: 2013-11-26 Impact factor: 2.629