Jennifer Petkovic1,2,3, Jennifer L Barton4,5,6, Caroline Flurey4,5,6, Niti Goel4,5,6, Christie M Bartels4,5,6, Cheryl Barnabe4,5,6, Maarten P T de Wit4,5,6, Anne Lyddiatt4,5,6, Diane Lacaille4,5,6, Vivian Welch4,5,6, Annelies Boonen4,5,6, Beverley Shea4,5,6, Robin Christensen4,5,6, Lara J Maxwell4,5,6, Willemina Campbell4,5,6, Janet Jull4,5,6, Karine Toupin-April4,5,6, Jasvinder A Singh4,5,6, Charles H Goldsmith4,5,6, Antoine G Sreih4,5,6, Christoph Pohl4,5,6, Catherine Hofstetter4,5,6, Dorcas E Beaton4,5,6, Rachelle Buchbinder4,5,6, Francis Guillemin4,5,6, Peter S Tugwell4,5,6. 1. From the Bruyère Research Institute, University of Ottawa; Ottawa Hospital Research Institute and School of Epidemiology, Public Health and Preventative Medicine, University of Ottawa; Cochrane Musculoskeletal Group, University of Ottawa; Children's Hospital of Eastern Ontario Research Institute; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; Department of Medicine, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Clinical Epidemiology Program; Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital; Institute for Work and Health; Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario; Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta; Division of Rheumatology Department of Medicine, University of British Columbia (UBC); Department of Occupational Science and Occupational Therapy, Faculty of Medicine, UBC, Vancouver; Arthritis Research Canada, Richmond; Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada; Veterans Affairs Portland Health Care System, Oregon Health and Science University, Portland, Oregon; Division of Rheumatology, Duke University School of Medicine, Durham, North Carolina; Quintiles IMS, Denver, Colorado; Department of Medicine, Rheumatology Division, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin; University of Alabama at Birmingham; Birmingham Veterans Affairs Medical Center, Birmingham, Alabama; Department of Orthopedics, Mayo Clinic College of Medicine, Rochester, Minnesota; Penn Vasculitis Center, Division of Rheumatology, The University of Pennsylvania, Philadelphia, Pennsylvania, USA; University of the West of England, Bristol, UK; VU University Medical Centre, Department Medical Humanities, EMGO+ Research Institute, Amsterdam; Department Internal Medicine, Division of Rheumatology, Maastricht University Medical Center; Caphri Graduate School Maastricht University, Maastricht, the Netherlands; Musculoskeletal Statistics Unit, The Parker Institute; Frederiksberg Hospital, Copenhagen, Denmark; Department Internal Medicine II, Rheumatology, Schlosspark-Klinik Berlin, Charité - Medical University Berlin, Berlin, Germany; Monash Department of Clinical Epidemiology, Cabrini Institute and Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia; University of Lorraine, Nancy, France. jennifer.petkovic@uottawa.ca. 2. J.A. Singh has received research grants from Takeda and Savient, and consultant fees from Savient, Takeda, Regeneron, Merz, Iroko, Bioiberica, Crealta and Allergan pharmaceuticals, WebMD, UBM LLC, and the American College of Rheumatology. J.A. Singh serves as the principal investigator for an investigator-initiated study funded by Horizon pharmaceuticals through a grant to DINORA Inc., a 501 (c)(3) entity. J.A. Singh is a member of the executive of OMERACT, an organization that develops outcome measures in rheumatology and receives arms-length funding from 36 companies; a member of the American College of Rheumatology's (ACR) Annual Meeting Planning Committee; Chair of the ACR Meet-the-Professor Workshop and Study Group Subcommittee; and a member of the Veterans Affairs Rheumatology Field Advisory Committee. C. Bartels receives institutional peer-reviewed grant support from Independent Grants for Learning and Change (Pfizer) unrelated to this work. jennifer.petkovic@uottawa.ca. 3. J. Petkovic, MSc, Bruyère Research Institute, University of Ottawa; J.L. Barton, MD, Veterans Affairs Portland Health Care System, Oregon Health and Science University; C. Flurey, PhD, University of the West of England; N. Goel, MD, Division of Rheumatology, Duke University School of Medicine, and Advisory Services, Quintiles IMS, and Patient Research Partner; C.M. Bartels, MD, MS, Department of Medicine, Rheumatology Division, University of Wisconsin School of Medicine and Public Health; C. Barnabe, MD, Departments of Medicine and Community Health Sciences, University of Calgary; M.P. de Wit, PhD, Patient Researcher, VU University Medical Centre, Department Medical Humanities, EMGO+ Research Institute; A. Lyddiatt, Patient Research Partner; D. Lacaille, MD, MHSc, Professor, Division of Rheumatology Department of Medicine, UBC, and Senior Scientist, Arthritis Research Canada; V. Welch, PhD, Bruyère Research Institute, University of Ottawa; A. Boonen, MD, PhD, Department Internal Medicine, Division of Rheumatology Maastricht, University Medical Center, and Caphri Graduate School Maastricht University; B. Shea, PhD, Ottawa Hospital Research Institute and School of Epidemiology, Public Health and Preventative Medicine, University of Ottawa; R. Christensen, MSc, PhD, Musculoskeletal Statistics Unit, The Parker Institute, and Frederiksberg Hospital; L.J. Maxwell, PhD, Cochrane Musculoskeletal Group, University of Ottawa; W. Campbell, LLB, Patient Research Partner; J. Jull, PhD, Bruyere Research Institute; K. Toupin-April, PhD, Children's Hospital of Eastern Ontario Research Institute, and Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; J.A. Singh, MBBS, MPH, Professor of Medicine and Epidemiology, University of Alabama at Birmingham, and Staff Physician, Birmingham Veterans Affairs Medical Center, and Research Collaborator, Department of Orthopedics, Mayo Clinic College of Medicine; C.H. Goldsmith, BSc, MSc, PhD, Faculty of Health Sciences, Simon Fraser University, and Adjunct Professor, Department of Occupational Science and Occupational Therapy, Faculty of Medicine, UBC; A.G. Sreih, MD, Penn Vasculitis Center, Division of Rheumatology, The University of Pennsylvania; C. Pohl, MD, Department of Internal Medicine II, Rheumatology, Schlosspark-Klinik Berlin, University Medicine Berlin; C. Hofstetter, Patient Research Partner; D.E. Beaton, PhD, Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital, and Institute for Work and Health, and Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Institute of Health Policy Management and Evaluation, University of Toronto; R. Buchbinder, PhD, Monash Department of Clinical Epidemiology, Cabrini Institute and Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University; F. Guillemin, MD, PhD, University of Lorraine; P.S. Tugwell, MD, MSc, Department of Medicine, Faculty of Medicine, University of Ottawa, and Ottawa Hospital Research Institute, Clinical Epidemiology Program, and Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, Ottawa. jennifer.petkovic@uottawa.ca. 4. From the Bruyère Research Institute, University of Ottawa; Ottawa Hospital Research Institute and School of Epidemiology, Public Health and Preventative Medicine, University of Ottawa; Cochrane Musculoskeletal Group, University of Ottawa; Children's Hospital of Eastern Ontario Research Institute; Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; Department of Medicine, Faculty of Medicine, University of Ottawa; Ottawa Hospital Research Institute, Clinical Epidemiology Program; Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, Ottawa; Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital; Institute for Work and Health; Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Institute of Health Policy Management and Evaluation, University of Toronto, Toronto, Ontario; Departments of Medicine and Community Health Sciences, University of Calgary, Calgary, Alberta; Division of Rheumatology Department of Medicine, University of British Columbia (UBC); Department of Occupational Science and Occupational Therapy, Faculty of Medicine, UBC, Vancouver; Arthritis Research Canada, Richmond; Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada; Veterans Affairs Portland Health Care System, Oregon Health and Science University, Portland, Oregon; Division of Rheumatology, Duke University School of Medicine, Durham, North Carolina; Quintiles IMS, Denver, Colorado; Department of Medicine, Rheumatology Division, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin; University of Alabama at Birmingham; Birmingham Veterans Affairs Medical Center, Birmingham, Alabama; Department of Orthopedics, Mayo Clinic College of Medicine, Rochester, Minnesota; Penn Vasculitis Center, Division of Rheumatology, The University of Pennsylvania, Philadelphia, Pennsylvania, USA; University of the West of England, Bristol, UK; VU University Medical Centre, Department Medical Humanities, EMGO+ Research Institute, Amsterdam; Department Internal Medicine, Division of Rheumatology, Maastricht University Medical Center; Caphri Graduate School Maastricht University, Maastricht, the Netherlands; Musculoskeletal Statistics Unit, The Parker Institute; Frederiksberg Hospital, Copenhagen, Denmark; Department Internal Medicine II, Rheumatology, Schlosspark-Klinik Berlin, Charité - Medical University Berlin, Berlin, Germany; Monash Department of Clinical Epidemiology, Cabrini Institute and Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, Australia; University of Lorraine, Nancy, France. 5. J.A. Singh has received research grants from Takeda and Savient, and consultant fees from Savient, Takeda, Regeneron, Merz, Iroko, Bioiberica, Crealta and Allergan pharmaceuticals, WebMD, UBM LLC, and the American College of Rheumatology. J.A. Singh serves as the principal investigator for an investigator-initiated study funded by Horizon pharmaceuticals through a grant to DINORA Inc., a 501 (c)(3) entity. J.A. Singh is a member of the executive of OMERACT, an organization that develops outcome measures in rheumatology and receives arms-length funding from 36 companies; a member of the American College of Rheumatology's (ACR) Annual Meeting Planning Committee; Chair of the ACR Meet-the-Professor Workshop and Study Group Subcommittee; and a member of the Veterans Affairs Rheumatology Field Advisory Committee. C. Bartels receives institutional peer-reviewed grant support from Independent Grants for Learning and Change (Pfizer) unrelated to this work. 6. J. Petkovic, MSc, Bruyère Research Institute, University of Ottawa; J.L. Barton, MD, Veterans Affairs Portland Health Care System, Oregon Health and Science University; C. Flurey, PhD, University of the West of England; N. Goel, MD, Division of Rheumatology, Duke University School of Medicine, and Advisory Services, Quintiles IMS, and Patient Research Partner; C.M. Bartels, MD, MS, Department of Medicine, Rheumatology Division, University of Wisconsin School of Medicine and Public Health; C. Barnabe, MD, Departments of Medicine and Community Health Sciences, University of Calgary; M.P. de Wit, PhD, Patient Researcher, VU University Medical Centre, Department Medical Humanities, EMGO+ Research Institute; A. Lyddiatt, Patient Research Partner; D. Lacaille, MD, MHSc, Professor, Division of Rheumatology Department of Medicine, UBC, and Senior Scientist, Arthritis Research Canada; V. Welch, PhD, Bruyère Research Institute, University of Ottawa; A. Boonen, MD, PhD, Department Internal Medicine, Division of Rheumatology Maastricht, University Medical Center, and Caphri Graduate School Maastricht University; B. Shea, PhD, Ottawa Hospital Research Institute and School of Epidemiology, Public Health and Preventative Medicine, University of Ottawa; R. Christensen, MSc, PhD, Musculoskeletal Statistics Unit, The Parker Institute, and Frederiksberg Hospital; L.J. Maxwell, PhD, Cochrane Musculoskeletal Group, University of Ottawa; W. Campbell, LLB, Patient Research Partner; J. Jull, PhD, Bruyere Research Institute; K. Toupin-April, PhD, Children's Hospital of Eastern Ontario Research Institute, and Department of Pediatrics and School of Rehabilitation Sciences, University of Ottawa; J.A. Singh, MBBS, MPH, Professor of Medicine and Epidemiology, University of Alabama at Birmingham, and Staff Physician, Birmingham Veterans Affairs Medical Center, and Research Collaborator, Department of Orthopedics, Mayo Clinic College of Medicine; C.H. Goldsmith, BSc, MSc, PhD, Faculty of Health Sciences, Simon Fraser University, and Adjunct Professor, Department of Occupational Science and Occupational Therapy, Faculty of Medicine, UBC; A.G. Sreih, MD, Penn Vasculitis Center, Division of Rheumatology, The University of Pennsylvania; C. Pohl, MD, Department of Internal Medicine II, Rheumatology, Schlosspark-Klinik Berlin, University Medicine Berlin; C. Hofstetter, Patient Research Partner; D.E. Beaton, PhD, Musculoskeletal Health and Outcomes Research, Li Ka Shing Knowledge Institute, St. Michael's Hospital, and Institute for Work and Health, and Occupational Science and Occupational Therapy, Rehabilitation Sciences Institute, Institute of Health Policy Management and Evaluation, University of Toronto; R. Buchbinder, PhD, Monash Department of Clinical Epidemiology, Cabrini Institute and Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University; F. Guillemin, MD, PhD, University of Lorraine; P.S. Tugwell, MD, MSc, Department of Medicine, Faculty of Medicine, University of Ottawa, and Ottawa Hospital Research Institute, Clinical Epidemiology Program, and Department of Epidemiology and Community Medicine, Faculty of Medicine, University of Ottawa, Ottawa.
Abstract
OBJECTIVE: Despite advances integrating patient-centered outcomes into rheumatologic studies, concerns remain regarding their representativeness across diverse patient groups and how this affects equity. The Outcome Measures in Rheumatology (OMERACT) Equity Working Group aims to determine whether and how to address equity issues within the core outcome sets of domains and instruments. METHODS: We surveyed current and previous OMERACT meeting attendees and members of the Campbell and Cochrane Equity Group regarding whether to address equity issues within the OMERACT Filter 2.0 Core Outcome Sets and how to assess the appropriateness of domains, instruments, and measurement properties among diverse patients. At OMERACT 2016, results of the survey and a narrative review of differential psychosocial effects of rheumatoid arthritis (i.e., on men) were presented to stimulate discussion and develop a research agenda. RESULTS: We proposed 6 moments for which an equity lens could be added to the development, selection, or testing of patient-reported outcome measures (PROM): (1) recruitment, (2) domain selection, (3) feasibility in diverse settings, (4) instrument validity, (5) thresholds of meaning, and (6) consideration of statistical power of subgroup analyses for outcome reporting. CONCLUSION: There is a need to (1) conduct a systematic review to assess how equity and population characteristics have been considered in PROM development and whether these differences influence the ranking of importance of outcome domains or a patient's response to questionnaire items, and (2) conduct the same survey described above with patients representing groups experiencing health inequities.
OBJECTIVE: Despite advances integrating patient-centered outcomes into rheumatologic studies, concerns remain regarding their representativeness across diverse patient groups and how this affects equity. The Outcome Measures in Rheumatology (OMERACT) Equity Working Group aims to determine whether and how to address equity issues within the core outcome sets of domains and instruments. METHODS: We surveyed current and previous OMERACT meeting attendees and members of the Campbell and Cochrane Equity Group regarding whether to address equity issues within the OMERACT Filter 2.0 Core Outcome Sets and how to assess the appropriateness of domains, instruments, and measurement properties among diverse patients. At OMERACT 2016, results of the survey and a narrative review of differential psychosocial effects of rheumatoid arthritis (i.e., on men) were presented to stimulate discussion and develop a research agenda. RESULTS: We proposed 6 moments for which an equity lens could be added to the development, selection, or testing of patient-reported outcome measures (PROM): (1) recruitment, (2) domain selection, (3) feasibility in diverse settings, (4) instrument validity, (5) thresholds of meaning, and (6) consideration of statistical power of subgroup analyses for outcome reporting. CONCLUSION: There is a need to (1) conduct a systematic review to assess how equity and population characteristics have been considered in PROM development and whether these differences influence the ranking of importance of outcome domains or a patient's response to questionnaire items, and (2) conduct the same survey described above with patients representing groups experiencing health inequities.
Entities:
Keywords:
ARTHRITIS; HEALTH EQUITY; OMERACT; OUTCOME ASSESSMENT; RHEUMATOLOGY
Authors: Vivian P Bykerk; Elisabeth Lie; Susan J Bartlett; Rieke Alten; Annelies Boonen; Robin Christensen; Daniel E Furst; Sarah Hewlett; Amye L Leong; Anne Lyddiatt; Lyn March; James E May; Pam Montie; Ana-Maria Orbai; Christoph Pohl; Marieke Scholte Voshaar; Thasia Woodworth; Clifton O Bingham; Ernest H Choy Journal: J Rheumatol Date: 2014-03-01 Impact factor: 4.666
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Authors: Joel Hirsh; Patrick Wood; Angela Keniston; Dennis Boyle; Itziar Quinzanos; Liron Caplan; Lisa Davis Journal: ACR Open Rheumatol Date: 2020-01-19