Karine Toupin-April1,2,3, Adam M Huber4,5, Ciarán M Duffy6,7,8, Laurie Proulx9, Esi M Morgan10, Janice S Cohen6,11,12, Isabelle Gaboury13, Linda C Li14,15, Peter Tugwell16,17,18,19, Jennifer Stinson20,21. 1. Children's Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, ON, K1H 8L1, Canada. ktoupina@uottawa.ca. 2. Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca. 3. School of Rehabilitation Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada. ktoupina@uottawa.ca. 4. Division of Rheumatology, IWK Health Centre, Halifax, NS, Canada. 5. Department of Pediatrics, Dalhousie University, Halifax, NS, Canada. 6. Children's Hospital of Eastern Ontario Research Institute, 401 Smyth Road, Ottawa, ON, K1H 8L1, Canada. 7. Department of Pediatrics, Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada. 8. Division of Rheumatology, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada. 9. Canadian Arthritis Patient Alliance, Ottawa, ON, Canada. 10. Department of Pediatrics, Division of Rheumatology, Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH, USA. 11. Behavioural Neurosciences and Consultation Liaison Team, Mental Health Patient Service Unit, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada. 12. School of Psychology, Faculty of Social Sciences, University of Ottawa, Ottawa, ON, Canada. 13. Department of Family Medicine and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Longueuil, QC, Canada. 14. Harold Robinson Arthritis Society Chair in Arthritic Diseases, Department of Physical Therapy, University of British Columbia, Vancouver, BC, Canada. 15. Arthritis Research Canada, Richmond, BC, Canada. 16. Department of Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Canada. 17. School of Epidemiology and Public Health, Faculty of Medicine, University of Ottawa, Ottawa, Canada. 18. Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Canada. 19. WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Bruyère Research Institute, Ottawa, ON, Canada. 20. Child Health Evaluative Sciences, Research Institute, Hospital for Sick Children, Toronto, ON, Canada. 21. Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
Abstract
BACKGROUND: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. OBJECTIVE: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. METHODS: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. RESULTS: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. CONCLUSION: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.
BACKGROUND: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. OBJECTIVE: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. METHODS: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. RESULTS: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. CONCLUSION: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.