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Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map

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.

Plain Language Summary

Youths with juvenile idiopathic arthritis (JIA) often feel pain and try many pain treatments such as medications and physical or psychological treatments. Choosing treatments can be hard for families, and health care providers do not always provide information on pain treatments. Our team is developing the JIA Option Map, a tool that presents information on pain treatments based on personal preferences. The tool takes patients through a five-step process where they describe their pain, express their preferences, and learn about more than 30 pain treatments. Patients can then choose treatments and make a plan to use them. This paper explains how a paper-based version of the tool was developed and whether it is suitable for youths, parents, and health care providers. The tool was developed by holding meetings with youths with JIA, health care providers, and researchers to agree on the content and format. We also interviewed youths with JIA, parents, and health care providers to test whether it was suitable. All participants felt that the tool was suitable and that it would be useful for making decisions about pain treatments. Participants liked the idea of using a web-based tool with coaching by health care providers. Work is underway to develop this improved version of the JIA Option Map.

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Acknowledgements

The authors thank Lucie Brosseau, Janique Gagnon, Marg Bisch, Cathy Walker, Timothy Kwok, Lindsay Junkin, Tracy Ting, William Bernal, Ken Schikler, Laura Schanberg, Bridget Edghill, and Chitra Lalloo for their feedback throughout this research project. We would also like to thank the study participants and the CHEO Rheumatology clinic, CARRA and PR-COIN. JIA Option Map Group: Deema Couchman, Children’s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9918-2582). Fjolla Berbatovci, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7711-5365). Andrea Boyd, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-4118-2766). Hannah Sachs, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-9030-2632). Alexandra Sirois, Canadian Arthritis Patient Alliance, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-9513-0232). Aditi Sivakumar, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0002-2098-6191). Marco Ragusa, Children’s Hospital of Eastern Ontario Research Institute; University of Ottawa, Ottawa, Ontario, Canada. (ORCID iD: 0000-0001-7938-5879). Tania El Hindi, Statistics Canada, Ottawa, Ontario, Canada (ORCID iD: 0000-0002-8670-7941). Elizabeth Stringer, Division of Rheumatology, IWK Health Centre; Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada. Sabrina Cavallo, School of Rehabilitation, Université de Montréal, Montréal, Québec, Canada. (ORCID iD: 0000-0003-0484-1205). Erin Ueffing, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. Michele Gibbon, Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada. (ORCID iD: 0000-0003-4630-8425). Paul R. Fortin, Axe Maladies infectieuses et immunitaires, CHU de Québec; Université Laval, Québec City, Québec, Canada. (0000-0002-7278-2596). William Brinkman, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center; University of Cincinnati College of Medicine, Cincinnati, Ohio, USA. (ORCID iD: 0000-0003-3336-7637). Mark Connelly, Division of Developmental and Behavioral Health, Children’s Mercy Kansas City, Kansas City, Missouri, USA (ORCID iD: 0000-0001-8157-8901). Jennifer E. Weiss, Pediatric Rheumatology, Hackensack Meridian Health, Hackensack University Medical Center, Hackensack, New Jersey, USA (ORCID iD: 0000-0002-8954-1326). Sabrina Gmuca, Division of Rheumatology, Center for Pediatric Clinical Effectiveness, PolicyLab, Children’s Hospital of Philadelphia; Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA (ORCID iD: 0000-0003-3533-5698). Simon Décary, Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, Centre de recherche sur les soins et les services de première ligne de l’Université Laval (CERSSPL-UL); Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, Québec, Canada (ORCID iD: 0000-0002-8672-5672).

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Correspondence to Karine Toupin-April.

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Funding

This work was supported by a Young Investigator Operating Grant from The Arthritis Society (Dr. Karine Toupin April, principal investigator), operating funds from the Chronic Pain Network (a Network funded by the CIHR SPOR), the CHEO Research Institute, and an Early Researcher Award from the Ontario Ministry of Economic Development, Job Creation and Trade (Dr. Karine Toupin April).

Conflicts of interest

Karine Toupin April, Adam M. Huber, Ciarán M. Duffy, Laurie Proulx, Esi M. Morgan, Janice S. Cohen, Isabelle Gaboury, Linda C. Li, Peter Tugwell, and Jennifer Stinson have no conflicts of interest that are directly relevant to the content of this article.

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Ethics approval was obtained from the Children’s Hospital of Eastern Ontario Research Institute.

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Participants were asked to sign an informed consent form or assent form. Some identifying information was collected and anonymized but not linked to the research data.

Author contributions

All authors contributed to the design of the project. KTA led the research. All authors contributed to developing the protocol (KTA, AMH, CMD, LP, EMM, JSC, IG, LCL, PT, JS, DC, ASirois, ES, SC, PRF, WB, MC, JEW, SG), performing data collection and extraction (KTA, DC, FB, AB, HS, ASivakumar, MR, TEH, MG), analyses (KTA, DC, FB, AS, MR) or interpretation (KTA, AMH, CMD, LP, EMM, JSC, IG, LCL, PT, JS, DC, FB, AB, HS, ASirois, ASivakumar, MR, TEH, ES, SC, EU, PRF, WB, MC, JEW, SG, SD), and all approved the final manuscript and are accountable for accuracy and integrity of work across all phases of the project.

Additional information

The members of the the JIA Option Map Group are listed in Acknowledgements section.

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Toupin-April, K., Huber, A.M., Duffy, C.M. et al. Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map. Patient 13, 719–728 (2020). https://doi.org/10.1007/s40271-020-00458-z

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  • DOI: https://doi.org/10.1007/s40271-020-00458-z