Le français suit / French follows
By Melody Choi
Juvenile idiopathic arthritis (JIA) affects many children and adolescents but remains understudied. Dr. Toupin-April discovered this field early in her career and has since focused on understanding the complex challenges youth with JIA face. Through patient-oriented research, she aims to improve treatment decisions and participation in daily activities for young patients. This led her research group, the Choice Research Lab to conduct various studies on decision making needs and to develop an innovative web-based interactive patient decision aid to help choose among symptom management strategies for JIA: the JIA Option Map. In this interview, she discusses her journey, her research on patient engagement and pain management, and the importance of team science.
- What inspired you to focus on this population, and what unique challenges and opportunities have you encountered in your work with youth living with JIA?
I came to focus on JIA somewhat by chance. During my master’s degree, I met a supervisor who was leading a CIHR-funded project on JIA. At that time, I wasn’t very familiar with JIA and, like many, I assumed arthritis mainly affected older adults. My work at the Montreal Children’s Hospital opened my eyes to this population. Having had asthma since childhood, I noticed some parallels between my own experiences as a patient and those of youth living with JIA, which deepened my interest.
Initially, my master’s degree research compared perceptions of children with arthritis and their parents regarding quality of life and treatment adherence using quantitative methods. During my PhD and post-doc, I explored complementary medicine use among youth with JIA, and developed a tool to help families discuss these approaches with healthcare providers. As I progressed through my studies, I recognized the complexity of JIA and realized that qualitative research was needed to better understand patients’ lived experiences. I also learned about shared decision making and patient decisions aids, which have strong potential in rheumatology. I was inspired to conduct research on shared decision making and to develop a tool to support shared decision making between youth with JIA and health care providers. More recently, we focused on how young people with JIA choose treatments to manage their symptoms and daily activities. This work culminated in the creation of the JIA Option Map — a patient decision aid app providing evidence-based information on about 40 treatment options. It helps youth clarify their values and preferences and supports informed, personalized treatment decisions in partnership with their healthcare providers.
JIA is a complex condition, with physical, psychological, and functional impacts that affect many aspects of a young person’s life. This complexity underscores the need for ongoing research to improve decision making and self-management.
- How did you come to integrate patient engagement into your own work?
I first began engaging patients in my research during my master’s degree, thanks to the Canadian Arthritis Network (CAN), which was funded by CIHR. What stood out to me about CAN was their commitment to including people with lived experience alongside clinicians and researchers at their conferences. Hearing directly from patients about what truly matters to them made a strong impression.
Through these networking opportunities, I connected with patient partners and became fully committed to including their voices in all my research. I believe that involving patients at every stage of the research process is essential to producing research that is both relevant and impactful for the populations it aims to serve.
That said, I recognize that engaging patients early can be challenging, especially before funding is secured. That’s why initiatives like the CIHR Inclusive Research Excellence Prizes are so important because they validate and celebrate the value of involving patients and diverse teams in research. For us, the recognition has strengthened our resolve to continue engaging patient partners actively and to build on the collaborative work we’ve already begun.
- In your experience, what are the most significant barriers to effective pain management for youth with JIA, and how can shared decision making approaches help overcome these challenges?
Pain management is a critical part of care for youth with JIA, but patients often highlight other important symptoms too—like fatigue, stiffness, anxiety and feeling down. Beyond managing symptoms, it’s also essential to ensure young people can fully participate in meaningful activities in their daily lives.
My background as an occupational therapist has shaped my focus on helping youth maintain their ability to enjoy and engage in everyday activities. To manage symptoms effectively, young people need access to reliable, user-friendly information that supports informed health decisions. Equally important is having open discussions between youth, families and healthcare providers to clarify youth’s and families’ values and preferences about treatment options. Shared decision making plays a vital role here. It’s a collaborative process where patients and their families, and healthcare providers make decisions based on the best scientific evidence and the patient’s own values and preferences. This process will help empower youth and families to take an active role in decision making and in their care. Tools like patient decision aids and decision coaching can facilitate this, moving away from one-sided, prescriptive approaches toward truly patient-centered care.
- How has team science contributed to the success of your projects and what have you learned about fostering effective collaboration across diverse research teams?
When developing the JIA Option Map, we recognized early on the importance of building a diverse research team. We brought together clinicians from various professions and disciplines, as well as experts from fields that don’t typically intersect, like occupational therapy and computer science. This diversity was beneficial, but it also meant navigating different professional languages and perspectives, for instance what might be clinical jargon for one group could be unfamiliar to another.
Through open communication and a common goal, we worked to bridge these gaps. I’ve learned that successful team science requires valuing diverse viewpoints, fostering mutual respect, and being willing to translate ideas across disciplines. This collaborative spirit not only enriched the project but also made our work stronger and more relevant. Working with a group of amazing patient partners, healthcare providers and researchers will facilitate the implementation of the JIA Option Map into clinical care, which will help youth with JIA and their families make optimal treatment decisions and feel empowered to manage their health.