Our research: The JIA Option Map
When I was asked to write a blog post, I tried to think about some of the work that I am a part of right now that may be of interest to readers. One of the projects that comes to mind is the work that our research group (The Choice Research Lab) is doing, funded by the Canadian Rheumatology Association, to expand on the JIA Option Map. This is an interactive web application to help young people with juvenile idiopathic arthritis (JIA) and their families manage pain. This app is a “patient decision aid” (PDA), a tool that helps people make better health decisions. It provides evidence-based information on potential treatments that young people can use and asks them and their families about preferred treatments, and their benefits and risks. Based on these answers, young people are shown the treatment options that match their values and preferences. They can also view a wide range of treatments including pharmacological (e.g., pills), nutritional (e.g., diet), physical (e.g., massage) and psychological approaches (e.g., relaxation) (1). There are about 40 options to manage JIA pain in the JIA Option Map! (2)
If you read some of my previous Take a Pain Check blog posts (“Shared decision making: a future without limits” and “Patient engagement in research”), you will see that our whole research team values shared decision making (SDM). This is a process by which young people and their families make decisions together with their healthcare providers (HCPs) and is informed by scientific evidence and young people’s values and preferences. PDAs can help prepare young people and families to engage in SDM and make the best decisions possible for themselves. We also value patient engagement in research, which aims to engage patients as equal partners on the research team. Finally, we find it crucial to use integrated knowledge translation, which means that we should engage all people who will use and benefit from our work, including a wide range of HCPs and researchers. This approach helps ensure that all of these people will find our work relevant and that they will implement the PDA in clinics.
How we integrated our values into our research
Using integrated knowledge translation, our research team has been working with young people with JIA as equal partners of our research team, along with HCPs and researchers. We tested a different patient engagement approach in which a knowledge broker living with JIA plays a central role in leading patient engagement and knowledge translation activities (3). This approach has led to improvements in the way we do research and share findings. Our patient partners felt that this approach enabled them to provide valuable insights and benefitted them personally. We also engaged over 30 HCPs from various professions (i.e., pediatric rheumatologists, nurses, physical therapists, occupational therapists, psychologists, social workers, dieticians) and researchers from various fields (e.g., SDM, pediatric rheumatology, pain management, computer science). Collaborating has expanded each person’s perspective, and led to developing a new type of PDA. Parents and young people said they liked and felt they could use the JIA Option Map, and that it could lead to better decision-making outcomes. They also felt that it could help them manage JIA and consider accessing different HCPs. Our team recently won a Canadian Institutes of Health Research-Institute of Musculoskeletal Health (CIHR-IMHA) Inclusive Research Excellence Prize for Patient Engagement and Team Science for this work.
Our more recent work: expansion of the JIA Option Map
More recently, our research group identified a need to expand the JIA Option Map to add other symptoms, such as fatigue, stiffness and mental health. One of the other aspects which was suggested to improve the JIA Option Map is the potential to provide tips to help young people not only manage symptoms but also participate in meaningful daily activities. Among our research team, several rehabilitation HCPs (e.g., occupational therapists, physiotherapists) felt that this would be very useful.
Based on these findings, we are currently expanding the app to include other symptoms that were felt to be important by patients with JIA, HCPs, and researchers (e.g., fatigue, stiffness, mental health symptoms). We will add treatment options to manage these symptoms and share tips to help young people participate fully in their activities (i.e., school, work, activities of daily living and leisure). Thus, the app will help to provide information on treatment options for various important symptoms and provide tips to help reduce the impact of these symptoms on their daily life. This expansion of the JIA Option Map is a process that has led to fruitful discussions about each HCP and patient partner’s vision of what is important for each young person and their families. It has shown that alleviating symptoms is important and that we must also consider participation in meaningful activities. This has led to a new understanding of SDM to better manage JIA and the potential of the JIA Option Map.
(1) Toupin-April K, Huber AM, Duffy CM, Proulx L, Morgan EM, Cohen JS, et al. Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map. Patient - Patient-Centered Outcomes Res. 2020;13(6):719–28.
(2) Toupin-April K, Huber AM, Duffy CM, Couchman D, Proulx L, Morgan EM, et al. Acceptability and Usability Testing of a Preliminary Version of the JIA Option Map, an Electronic Decision Aid for Pain Management Options in Juvenile Idiopathic Arthritis. Arthritis Rheumatol. 2020; 72 (suppl 4).
(3) Proulx L, Trehan N, Sirotich E, Abrahams N, Sirois A, Huber AM, et al. 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.