Exploring patient experiences in juvenile idiopathic arthritis

Adolescents and young adults with chronic diseases need special care—and pediatric rheumatological conditions can persist into adulthood. Two new works presented at the 2025 congress of EULAR—The European Alliance of Associations for Rheumatology—consider the training that health care professionals need to help support transition for younger patients, and the perspectives and experiences of young adults.

A systematic review aimed to assess the specific needs of adolescents and young adults with juvenile idiopathic arthritis (JIA). Data from 1,913 patients aged in the range of 11–30 years found that the three most common general needs were around daily activities and involvement in treatment decisions—each cited by 66%—and social life, including family and sexual considerations, which affected 55%.

Other key needs in increasing order of importance were mobility, future, education, disease management, and treatment. Of the studies that focused on mental health, the need for independence, emotional management, comparison with peers, constraints of the disease, normalizing illness, and lack of mental support were found to be important. Anxiety was significantly higher in people with JIA than in controls.

Crucially, the work highlighted that there is insufficient support available—and that many psychologists are not trained in JIA. When considering expectations around the physician-patient relationship, key themes were the importance of personalized care, a change of roles, and partnership. The reported needs did not vary according to JIA subtype.

In their conclusion, the authors noted that the findings are consistent with studies on other chronic diseases, and the systematic use of health questionnaires could be useful in everyday practice. The originality of this study lies in the description of the physician-patient relationship and the finding that adolescents expect to improve adherence.

Presenting the work at the congress in Barcelona, Sophie Hecquet said “Further work in this area could support a better understanding of needs, improve the physician-patient relationship, and allow for tracking the evolution of clinical practice during transition.”

More data presented at the congress came from IMPACT—a large study in the U.K. to design, develop, and test a technology intervention to support families of children and young people with rheumatological conditions. In the first phase, 174 children, young people, young adults, parents, and health care professionals were invited to focus groups to share their experiences and perspectives.

Two groups were dedicated to 8 young adults, aged 21–29 and with diverse rheumatological conditions. Themes from young adults included school, university and vocational support, knowing their rights, the need for better understanding of medication side effects, support and information for siblings and partners, and communication strategies to help in clinical care.

They emphasized how decisions are often shaped by the availability of health care providers, especially for patients with complex needs that require multiple specialist services—a challenge made worse by difficult transitions from pediatric to adult care.

“Some young adults feel like they are not heard and that they have to retell their story repeatedly, which is unnecessarily stressful,” said Dr. Polly Livermore, Chief Investigator of the study. This suggests there is a need to work together through the transition process to improve experiences and outcomes.

Taken together, these two abstracts highlight the ongoing challenges that young adults living with pediatric rheumatological conditions experience across their lifespan, and could be useful for clinicians in finding ways to work together to improve experiences and outcomes.

Provided by
European Alliance of Associations for Rheumatology, EULAR