类风湿关节炎的缓解：在OMERACT 12会议上努力纳入患者视角。
Remission in Rheumatoid Arthritis: Working Toward Incorporation of the Patient Perspective at OMERACT 12.
作者信息
van Tuyl Lilian H, Sadlonova Martina, Davis Bev, Flurey Caroline, Goel Niti, Hewlett Sarah E, Hill Catherine L, Hoogland Wijnanda, Kirwan John R, van Schaardenburg Dirkjan, Scholte-Voshaar Marieke, Smolen Josef S, Stamm Tanja, Wells George A, Boers Maarten
机构信息
From the Department of Rheumatology, and the Department of Epidemiology and Biostatistics, VU University Medical Center, Amsterdam, The Netherlands; Division of Rheumatology, Department of Medicine, Medical University of Vienna, Vienna, Austria; University of Bristol, and the University of the West of England, Academic Rheumatology Unit, Bristol Royal Infirmary; Bristol, UK; Quintiles Inc., Morrisville; Division of Rheumatology, Department of Medicine, Duke University School of Medicine, Durham, North Carolina, USA; Queen Elizabeth Hospital Department of Rheumatology, Woodville, South Australia; University of Adelaide, The Health Observatory Woodville, South Australia, Australia; Reade/Jan van Breemen Research Institute, Amsterdam, the Netherlands; Department of Epidemiology and Community Medicine, University of Ottawa Heart Institute, Ottawa, Ontario, Canada.L.H. van Tuyl, Postdoctoral Researcher, PhD, Department of Rheumatology, VU University Medical Center; M. Sadlonova, Occupational Therapist, MSc, Division of Rheumatology, Department of Medicine, Medical University of Vienna; B. Davis, Patient Research Partner, University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary; C. Flurey, Research Fellow, PhD, University of the West of England, Academic Rheumatology Unit, Bristol Royal Infirmary; N. Goel, MD, Senior Medical Director and Adjunct Assistant Professor of Medicine, Quintiles Inc., and Division of Rheumatology, Department of Medicine, Duke University School of Medicine; S.E. Hewlett, Professor of Rheumatology Nursing, PhD, University of the West of England, Academic Rheumatology Unit, Bristol Royal Infirmary; Queen Elizabeth Hospital, Department of Rheumatology, Woodville; C.L. Hill, MD, Rheumatologist, Queen Elizabeth Hospital Department of Rheumatology, Woodville, University of Adelaide, Health Observatory Woodville; W. Hoogland, MD, Patient Research Partner, Department of Rheumatology, VU University Medical Center; J.R. Kirwan, Professor o
出版信息
J Rheumatol. 2016 Jan;43(1):203-7. doi: 10.3899/jrheum.141113. Epub 2015 Feb 15.
OBJECTIVE
The treatment of rheumatoid arthritis (RA) should target patient-relevant outcomes, making patient perspective on remission essential. In 2010, patients, physicians, health professionals, and researchers at the Outcome Measures in Rheumatology (OMERACT) conference developed an ambitious research agenda to study the concept of remission. Qualitative research has since helped us understand the concept of remission from the patient perspective.
METHODS
During OMERACT 12, the OMERACT working group on patient perspective on remission in RA elaborated on data generated to date and discussed the methodological challenges ahead. Challenges included (1) selection of domains, (2) choice of a patient remission definition or a single domain to add to the current remission definition, and (3) the importance of pain in defining remission from a patient perspective.
RESULTS
Focus in the coming years will be on increasing our understanding by identifying the most important domains from the patient perspective regarding remission and investigating how these domains can be measured. Investigation into the Rheumatoid Arthritis Impact of Disease questionnaire, disease flare, as well as the concordance of domains from our ongoing remission survey is appropriate. More data and further discussions are needed to decide on the next steps.
CONCLUSION
Progress summarized over 4 years highlights the main methodological challenges discussed within the working group on patient perspective on remission in RA during OMERACT 12.
目的
类风湿关节炎（RA）的治疗应以与患者相关的结局为目标，因此患者对缓解的看法至关重要。2010年，风湿病疗效指标（OMERACT）会议上的患者、医生、健康专业人员和研究人员制定了一项宏伟的研究议程，以研究缓解的概念。自那时起，定性研究帮助我们从患者角度理解了缓解的概念。
方法
在OMERACT 12期间，RA缓解的患者视角OMERACT工作组详细阐述了迄今产生的数据，并讨论了未来的方法学挑战。这些挑战包括：（1）领域的选择；（2）选择患者缓解定义或在当前缓解定义中增加一个单一领域；（3）从患者角度定义缓解时疼痛的重要性。
结果
未来几年的重点将是通过从患者角度确定缓解最重要的领域并研究如何衡量这些领域来加深我们的理解。对类风湿关节炎疾病影响问卷、疾病复发以及我们正在进行的缓解调查中各领域的一致性进行调查是合适的。需要更多数据和进一步讨论来决定下一步措施。
结论
总结4年的进展突出了OMERACT 12期间RA缓解的患者视角工作组内讨论的主要方法学挑战。
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