Kathleen M Andersen1,2, Ayano Kelly1,2, Anne Lyddiatt1,2, Clifton O Bingham1,2, Vivian P Bykerk1,2, Adena Batterman1,2, Joan Westreich1,2, Michelle K Jones1,2, Marita Cross1,2, Peter M Brooks1,2, Lyn March1,2, Beverley Shea1,2, Peter Tugwell1,2, Lee S Simon1,2, Robin Christensen1,2, Susan J Bartlett3,4. 1. 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. 2. 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. 3. 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. susan.bartlett@mcgill.ca. 4. 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. susan.bartlett@mcgill.ca.
Abstract
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.
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.
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