Grieve Sharon, Perez Roberto S G M, Birklein Frank, Brunner Florian, Bruehl Stephen, Harden R Norman, Packham Tara, Gobeil Francois, Haigh Richard, Holly Janet, Terkelsen Astrid, Davies Lindsay, Lewis Jennifer, Thomassen Ilona, Connett Robyn, Worth Tina, Vatine Jean-Jacques, McCabe Candida S
aCRPS Service, Royal United Hospitals NHS Foundation Trust, Bath, United Kingdom bFaculty of Health and Applied Sciences, University of the West of England, Bristol, United Kingdom cDepartment of Anesthesiology, VU University Medical Centre, Amsterdam, the Netherlands dDepartment of Neurology, University Medical Centre Mainz, Mainz, Germany eDepartment of Physical Medicine and Rheumatology, Balgrist University Hospital, Zurich, Switzerland fDepartment of Anesthesiology, Vanderbilt University School of Medicine, Nashville, TN, USA gPM&R and PTHMS, Northwestern University, Chicago, IL, USA hHand Therapy Clinic, Regional Rehabilitation Program, Hamilton Health Sciences, Hamilton, ON, Canada iCSSS Pierre Boucher, Longueuil, QC, Canada jRheumatology Department, Royal Devon & Exeter Hospital, Exeter, United Kingdom kOut-patient and Outreach Rehabilitation Service, Ottawa Hospital Rehabilitation Centre, Ottawa, ON, Canada lDepartment of Neurology, Aarhus University Hospital, Aarhus, Denmark mDutch National CRPS Patient Organization, Nijmegen, the Netherlands nPatient Partner, Exeter, United Kingdom oMarket Access, Grünenthal Ltd, Stokenchurch, United Kingdom pRehabilitation Department, Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel qCenter for Rehabilitation of Pain Syndromes, Reuth Rehabilitation Hospital, Tel Aviv, Israel.
Pain. 2017 Jun;158(6):1083-1090. doi: 10.1097/j.pain.0000000000000866.
Complex regional pain syndrome (CRPS) is a persistent pain condition that remains incompletely understood and challenging to treat. Historically, a wide range of different outcome measures have been used to capture the multidimensional nature of CRPS. This has been a significant limiting factor in the advancement of our understanding of the mechanisms and management of CRPS. In 2013, an international consortium of patients, clinicians, researchers, and industry representatives was established, to develop and agree on a minimum core set of standardised outcome measures for use in future CRPS clinical research, including but not limited to clinical trials within adult populations. The development of a core measurement set was informed through workshops and supplementary work, using an iterative consensus process. "What is the clinical presentation and course of CRPS, and what factors influence it?" was agreed as the most pertinent research question that our standardised set of patient-reported outcome measures should be selected to answer. The domains encompassing the key concepts necessary to answer the research question were agreed as follows: pain, disease severity, participation and physical function, emotional and psychological function, self-efficacy, catastrophizing, and patient's global impression of change. The final core measurement set included the optimum generic or condition-specific patient-reported questionnaire outcome measures, which captured the essence of each domain, and 1 clinician-reported outcome measure to capture the degree of severity of CRPS. The next step is to test the feasibility and acceptability of collecting outcome measure data using the core measurement set in the CRPS population internationally.
复杂性区域疼痛综合征（CRPS）是一种持续存在的疼痛病症，其发病机制仍未完全明确，治疗也颇具挑战性。从历史上看，人们使用了各种各样不同的结局指标来描述CRPS的多维度特性。这一直是我们深入了解CRPS机制和治疗方法的一个重大限制因素。2013年，一个由患者、临床医生、研究人员和行业代表组成的国际联盟成立，旨在开发并商定一套最低限度的标准化核心结局指标，用于未来的CRPS临床研究，包括但不限于针对成年人群的临床试验。核心测量指标集的制定是通过研讨会和补充工作，并采用反复的共识达成过程来实现的。“CRPS的临床表现和病程是怎样的，有哪些因素会对其产生影响？”被一致认为是最相关的研究问题，我们应据此选择标准化的患者报告结局指标来回答。涵盖回答该研究问题所需关键概念的领域如下确定：疼痛、疾病严重程度、参与度和身体功能、情绪和心理功能、自我效能感、灾难化思维以及患者对变化的总体印象。最终的核心测量指标集包括最佳的通用或特定疾病的患者报告问卷结局指标，这些指标涵盖了每个领域的核心内容，以及一项临床医生报告的结局指标，用于评估CRPS的严重程度。下一步是在国际范围内对CRPS患者群体中使用核心测量指标集收集结局指标数据的可行性和可接受性进行测试。
