Fitzcharles Mary-Ann, Brachaniec Mary, Cooper Lynn, Dubin Ruth, Flynn Trudy, Gerhold Kerstin, Häuser Winfried, Cowan Katherine, Laupacis Andreas, Marleau Renee, Milot Marc, Szajcz-Keller Nicole, Sumpton Janice, Walsh Zach, El-Gabalawy Hani
Division of Rheumatology and Alan Edwards Pain Management Unit, McGill University Health Centre, Montreal, QC, Canada.
Riverview, NB, Canada.
Can J Pain. 2017 Oct 23;1(1):137-147. doi: 10.1080/24740527.2017.1374820. eCollection 2017.
: 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. : 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. : 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. : 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. : 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.
研究目标应聚焦于推动对健康有重大影响的知识发展。然而,研究议程大多由医疗保健界驱动,患者的参与有限。在本研究中,采用詹姆斯·林德联盟优先事项设定伙伴关系(JLA - PSP)方法,通过一个既定流程确定了可能推动纤维肌痛(FM)管理未来研究的不确定性优先事项。第一步,在加拿大全国范围内开展了一项调查,让患者、护理人员和医疗保健专业人员参与,就FM护理的八个开放式问题提供叙述性意见。对回答进行主题归纳和综合,形成了一份用于指导全面文献检索的43项不确定性的初始清单。已在文献中有效解决的问题被排除,剩下25项不确定性在为期一天的共识研讨会上进行了排序。出现了三个广泛的主题:个性化靶向治疗和患者分组的价值;各种自我管理策略和教育举措的效果;以及确定提供FM护理的理想医疗保健环境。阿片类药物和大麻素是唯一被列为需要进一步研究的特定药物干预措施。这些优先问题突出了认识FM症状异质性的重要性、个性化治疗方法的必要性以及对自我管理策略价值的更好理解。这是第一项使用既定且透明的方法让所有FM利益相关者参与,以帮助向研究人员和资助机构通报临床相关研究优先事项的研究。