Research ArticleAccepted Article
Patient perspectives on outcome domains of medication adherence trials in inflammatory arthritis: an international OMERACT focus group study
Charlotte L. Bekker, Sacha Bossina, Mary A. de Vera, Susan J. Bartlett, Maarten de Wit, Lyn March, Beverley Shea, Vicki Evans, Dawn Richards, Allison Tong, Peter Tugwell, Kathleen Tymms, Marieke Scholte-Voshaar, Ayano Kelly and Bart J.F. van den Bemt
The Journal of Rheumatology May 2021, jrheum.201568; DOI: https://doi.org/10.3899/jrheum.201568
Charlotte L. Bekker
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Sacha Bossina
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Mary A. de Vera
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Susan J. Bartlett
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Maarten de Wit
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Lyn March
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Beverley Shea
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Vicki Evans
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Dawn Richards
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Allison Tong
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Peter Tugwell
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Kathleen Tymms
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Marieke Scholte-Voshaar
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Ayano Kelly
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Bart J.F. van den Bemt
Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands; Department of Rheumatology, Liverpool Hospital, Sydney, Australia; Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, The University of British Columbia, Vancouver, British Columbia, Canada; Arthritis Research Canada, Richmond, British Columbia, Canada; Department of Medicine, McGill University and Research Institute, McGill University Health Centres, Montreal, Canada; Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, Maryland, USA; OMERACT Patient Research Partner, the Netherlands; Institute of Bone and Joint Research, Kolling Institute of Medical Research, Sydney, NSW, Australia; Department of Rheumatology, Royal North Shore Hospital, Sydney, NSW, Australia; Northern Clinical School, The University of Sydney, Sydney, NSW, Australia; Ottawa Hospital Research Institute, University of Ottawa, Ottawa, Ontario, Canada; Faculty of Health, University of Canberra, ACT, Australia; Five02 Labs Inc, Toronto, Canada; Canadian Arthritis Patient Alliance, Toronto, Canada; Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, NSW, Australia; Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; College of Health and Medicine, Australian National University, Canberra, ACT, Australia; Department of Rheumatology, Canberra Hospital, Canberra, ACT, Australia; University of Twente, Enschede, The Netherlands; South Western Clinical School, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; Sint Maartenskliniek, Nijmegen, The Netherlands. This project was supported by a 2020 Arthritis Australia Project Grant (Marion A Simpson Grant funded by the Estate of the Late Marion Alice Simpson). Corresponding author: Dr. Charlotte Bekker, Department of Pharmacy, Radboud university medical centre, Research Institute for Health Sciences, Nijmegen, The Netherlands. Charlotte.bekker@radboudumc.nl
Abstract
Objective To describe the perspectives of patients with inflammatory arthritis (IA) on outcome domains of trials evaluating medication adherence interventions.
Methods Adult patients (≥18 years) with IA using disease-modifying anti-rheumatic drugs (DMARDs) from centres across Australia, Canada, and the Netherlands participated in six focus groups to discuss outcome domains of medication adherence trials that they consider important. We analysed the transcripts using inductive thematic analysis.
Results Of the 38 participants, 23 (61%) had rheumatoid arthritis and 21 (55%) were female. The mean age was 57.3 ± SD [15.0] years. Improved outcome domains that patients wanted from participating in an adherence trial were categorised into five types: medication adherence, adherence-related factors (supporting adherence e.g. medication knowledge), pathophysiology (e.g. physical functioning), life impact (e.g. ability to work), and economic impact (e.g. productivity loss). Three overarching themes reflecting why these outcome domains matters to patients were identified. First, how taking medications could improve patient’s emotional and physical fitness to maintain their social function. Second, how improving knowledge and confidence in self-management increase patient’s trust in and motivation to take medications as agreed with minimal risk of harms. Finally, how respect and reassurance, reflecting healthcare that values patient’s opinions and is sensitive to patient’s individual goals could improve medication taking behaviour.
Conclusion Patients value various outcome domains to be evaluated in future adherence trials related to their overall well-being, confidence in medication use and patient-healthcare provider relationships.
In this issue
The Journal of Rheumatology
Vol. 50, Issue 3
1 Mar 2023
Accepted manuscript
Patient perspectives on outcome domains of medication adherence trials in inflammatory arthritis: an international OMERACT focus group study
Charlotte L. Bekker, Sacha Bossina, Mary A. de Vera, Susan J. Bartlett, Maarten de Wit, Lyn March, Beverley Shea, Vicki Evans, Dawn Richards, Allison Tong, Peter Tugwell, Kathleen Tymms, Marieke Scholte-Voshaar, Ayano Kelly, Bart J.F. van den Bemt
The Journal of Rheumatology May 2021, jrheum.201568; DOI: 10.3899/jrheum.201568
Accepted manuscript
Patient perspectives on outcome domains of medication adherence trials in inflammatory arthritis: an international OMERACT focus group study
Charlotte L. Bekker, Sacha Bossina, Mary A. de Vera, Susan J. Bartlett, Maarten de Wit, Lyn March, Beverley Shea, Vicki Evans, Dawn Richards, Allison Tong, Peter Tugwell, Kathleen Tymms, Marieke Scholte-Voshaar, Ayano Kelly, Bart J.F. van den Bemt
The Journal of Rheumatology May 2021, jrheum.201568; DOI: 10.3899/jrheum.201568
