患者对风湿病学试验中 DMARD 安全性问题的看法：来自炎症性关节炎患者焦点小组和 OMERACT 与会者讨论的结果。
Patient Perspectives on DMARD Safety Concerns in Rheumatology Trials: Results from Inflammatory Arthritis Patient Focus Groups and OMERACT Attendees Discussion.
机构信息
From the Department of Family Medicine, and the Department of Medicine, McGill University, Montreal, Quebec; Ottawa Hospital Research Institute, Ottawa Hospital; Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, Copenhagen; Department of Rheumatology, Odense University Hospital, Odense, Denmark; Canberra Rheumatology; College of Health and Medicine, Australian National University, Canberra; Centre for Kidney Research, The Children's Hospital at Westmead; Institute of Bone and Joint Research-Kolling Institute, University of Sydney; Sydney Medical School, University of Sydney, Sydney; Department of Rheumatology, Royal North Shore Hospital; Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, St Leonards; Centre for Health Policy, School of Population and Global Health, The University of Melbourne, Melbourne; Northern Health, Epping, Australia; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland; Division of Rheumatology, Department of Medicine, Hospital for Special Surgery; Department of Social Work Programs, Hospital for Special Surgery, New York, New York; SDG LLC, Cambridge, Massachusetts, USA.
K.M. Andersen, MSc, Department of Family Medicine, McGill University, and Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital; A. Kelly, MD, PhD student, Canberra Rheumatology, and College of Health and Medicine, Australian National University, and Centre for Kidney Research, The Children's Hospital at Westmead; A. Lyddiatt, Patient Partner; C.O. Bingham III, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; V.P. Bykerk, MD, Division of Rheumatology, Department of Medicine, Hospital for Special Surgery; A. Batterman, MSW, Department of Social Work Programs, Hospital for Special Surgery; J. Westreich, MSW, Department of Social Work Programs, Hospital for Special Surgery; M.K. Jones, BSc, Division of Rheumatology, Department of Medicine, Johns Hopkins University; M. Cross, PhD, Institute of Bone and Joint Research-Kolling Institute, University of Sydney, and Rheumatology Department, Royal North Shore Hospital; P.M. Brooks, MD, Centre for Health Policy, School of Population and Global Health, The University of Melbourne, and Northern Health; L. March, MBBS, MSc, PhD, FRACP, FAFPHM, Sydney Medical School, University of Sydney, and Institute of Bone and Joint Research, Kolling Institute, Northern Sydney Local Health District, St Leonards, and Department of Rheumatology, Royal North Shore Hospital; B. Shea, PhD, Clinical Investigator, Ottawa Hospital Research Institute, Ottawa Hospital, and Adjunct Professor, School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa; P. Tugwell, MD, MSc, Division of Rheumatology, Department of Medicine, and School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, and Clinical Epidemiology Program, Ottawa Hospital Research Institute; L.S. Simon, MD, SDG LLC; R. Christensen, PhD, Professor of Biostatistics and Clinical Epidemiology; Musculoskeletal Statistics Unit, The Parker Institute, Bispebjerg and Frederiksberg Hospital, and Department of Rheumatology, Odense University Hospital; S.J. Bartlett, PhD, Professor, Department of Medicine, McGill University, and Adjunct Professor, Division of Rheumatology, Department of Medicine, Johns Hopkins University.
出版信息
J Rheumatol. 2019 Sep;46(9):1168-1172. doi: 10.3899/jrheum.181185. Epub 2019 Feb 15.
OBJECTIVE
The Outcome Measures in Rheumatology (OMERACT) Safety Working Group is identifying core safety domains that matter most to patients with rheumatic disease.
METHODS
International focus groups were held with 39 patients with inflammatory arthritis to identify disease-modifying antirheumatic drug (DMARD) experiences and concerns. Themes were identified by pragmatic thematic coding and discussed in small groups by meeting attendees.
RESULTS
Patients view DMARD side effects as a continuum and consider the cumulative effect on day-to-day function. Disease and drug experiences, personal factors, and life circumstances influence tolerance of side effects and treatment persistence.
CONCLUSION
Patients weigh overall adverse effects and benefits over time in relation to experiences and life circumstances.
目的
风湿病结局测量（OMERACT）安全工作组正在确定对风湿病患者最重要的核心安全领域。
方法
对 39 例炎性关节炎患者进行了国际焦点小组讨论，以确定疾病修饰抗风湿药物（DMARD）的经验和关注点。通过实用主题编码确定主题，并由会议与会者在小团体中进行讨论。
结果
患者将 DMARD 副作用视为一个连续体，并考虑其对日常功能的累积影响。疾病和药物的经历、个人因素和生活环境影响对副作用的耐受性和治疗的持久性。
结论
患者根据自身经历和生活环境，权衡长期的总体不良反应和获益。
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