Fall 2023 (Volume 33, Number 3)

Going Beyond Pain: Expanding the JIA Option Map

By Karine Toupin-April, PhD; Elizabeth Stringer, MD, MSc, FRCPC; Laurie Proulx, patient author, Jennifer N. Stinson, RN-EC, PhD, CPNP, FAAN, and the JIA Option Map Group, part of the Choice Research Lab

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About the Study
Young people with juvenile idiopathic arthritis (YPJIA) experience physical and psychological symptoms that negatively impact a wide range of functional activities. YPJIA and their families need more information and decision support to help manage these symptoms. Our team previously developed the JIA Option Map, a web-based patient decision aid for JIA pain management. Our current work aims to expand the JIA Option Map to include interventions for other relevant symptoms and tips to participate fully in activities. With funding from the Canadian Initiative for Outcomes in Rheumatology cAre (CIORA), we sought to identify which symptoms and aspects of daily function should be added to the JIA Option Map.

Our team comprises 35 members, and includes patient partners, health care providers (HCPs), researchers and policy makers. HCPs include pediatric rheumatologists, nurses, occupational therapists, physical therapists, psychologists, social workers and dietitians. We held seven virtual research team meetings to identify and discuss the symptoms and functional activities that were relevant to YPJIA. Subsequently, we distributed an online survey to the research group and conducted two online consensus meetings to agree on the most important symptoms and functional activities to add to the JIA Option Map. Patient engagement is central to this project and is described at the following link: https://www.ktpathways.ca/system/files/resources/2022-12/2022-Vol-6_IKTRN-casebook.pdf

Which Symptoms Are the Most Important to Add to the JIA Option Map?
Seventeen individuals completed the survey, including four patient partners, 11 HCPs from four different professions, and seven researchers. Fatigue, stress, anxiety, joint stiffness, poor sleep, feeling down and joint swelling were rated as the most relevant. School and leisure were the highest rated functional activities, followed by activities of daily living and work. Eighteen people participated in the consensus meetings, including three patient partners and clinicians from four different professions. Both meetings determined that fatigue, stress/anxiety, and joint stiffness were the most important symptoms to add. All functional activities were considered important to add, with school and daily living activities rated as the most important.

Implications
Future work will help ensure that the expanded JIA Option Map integrates evidence-based information to address these symptoms and their impact on functional activities. Patient partners and clinicians are essential to help us ensure that this app will be easy to use and implement in clinical practice, to help young people and their families discuss treatment options and make the best decisions to manage their own health.

Co-authors:
We would like to acknowledge the co-authors of this work who are members of the JIA Option Map Group:

Natasha Trehan, Emily Sirotich, Naomi Abrahams, Alex Sirois, Adam M. Huber, Ciarán M. Duffy, Esi M. Morgan, Janice S. Cohen, Isabelle Gaboury, Linda C. Li, Nilay Arman, Mohreet Badal, Kathryn Birnie, Andrea Boyd, Paula Branco, Yvonne Brandelli, Jeannette Cappon, Sabrina Cavallo, Mark Connelly, Natoshia Cunningham, Simon Décary, Daniela Ghio, Michele Gibbon, Sabrina Gmuca. Victoria Harbottle, Andrea Knight, Rebecca Lee, Nadia Luca, Melissa Mannion, Rose Martini, Gail Paterson, Aparna Raguraman, Mahta Rafieinia, Tamar Rubinstein, Meghan Ryan, Peter Tugwell, Jennifer E Weiss

Karine Toupin-April, PhD
School of Rehabilitation Sciences, Faculty of Health Sciences
Department of Pediatrics, Faculty of Medicine
University of Ottawa
Children’s Hospital of Eastern Ontario Research Institute
Institut du savoir Montfort

Elizabeth Stringer, MD, MSc, FRCPC
Division of Rheumatology, IWK Health Centre
Department of Pediatrics and Medicine, Dalhousie University

Laurie Proulx
Patient author, Canadian Arthritis Patient Alliance
Jennifer N. Stinson, RN-EC, PhD, CPNP, FAAN
Mary Jo Haddad Nursing Chair in Child Health
Child Health Evaluative Sciences, Research Institute,
The Hospital for Sick Children
Lawrence S. Bloomberg, Faculty of Nursing, University of Toronto

References:

1. Toupin-April K, Huber AM, Duffy CM, et al. JIA Option Map Group. Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map. Patient. 2020 Dec;13(6):719-728. doi: 10.1007/s40271-020-00458-z. Epub 2020 Oct 9. PMID: 33033937.

2. Proulx L, Trehan N, Sirotich E, et al. [the JIA Option Map Group]. Chapter 11: Engaging young people with juvenile idiopathic arthritis in shared decision making research. How we work together: The Integrated Knowledge Translation Research Network Casebook. Vol. 6. Ottawa: Integrated Knowledge Translation Research Network, 2022.

3. Toupin-April K, Gaboury I, Proulx L, et al. “I’d like more options!”: Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis. Pediatric Rheumatology (In press).