Insights into Young Adults' Experiences with Juvenile Idiopathic Arthritis

Juvenile idiopathic arthritis (JIA) presents unique challenges for adolescents and young adults, necessitating tailored healthcare approaches. Recent findings presented at the 2025 congress of the European Alliance of Associations for Rheumatology (EULAR) delve into the specific needs of this demographic, highlighting essential areas of focus for healthcare providers.

A systematic review encompassing data from 1,913 patients aged 11 to 30 revealed that the primary needs identified by these individuals revolve around daily activities and participation in treatment decisions, each acknowledged by 66% of participants. Additionally, social life, which includes family dynamics and sexual health, was noted as a significant concern by 55% of those surveyed. Other important needs included mobility, future planning, education, disease management, and treatment considerations.

Mental health emerged as a critical area, with the review indicating that anxiety levels among those with JIA are notably higher compared to their peers without the condition. Key aspects contributing to mental health challenges include the desire for independence, emotional regulation, peer comparison, and the constraints imposed by their illness. Alarmingly, many psychologists lack specific training in JIA, underscoring the need for specialized support.

The findings also shed light on the expectations surrounding the physician-patient dynamic, emphasizing the importance of personalized care and collaborative partnerships. Notably, these needs did not differ significantly across various JIA subtypes.

In another session at the congress, insights from the IMPACT study in the U.K. were shared. This large-scale research project aims to create and evaluate a technological intervention designed to assist families of children and young people facing rheumatological conditions. The initial phase included focus groups with 174 participants, comprising children, young adults, parents, and healthcare professionals, who expressed their experiences and perspectives.

Among the young adult participants, aged 21 to 29 and managing diverse rheumatological conditions, themes emerged relating to educational support, awareness of their rights, understanding medication side effects, and the need for communication strategies in clinical settings. Participants articulated feelings of being unheard and the stress of repeatedly sharing their medical narratives, particularly during transitions from pediatric to adult care.

Dr. Polly Livermore, the Chief Investigator of the IMPACT study, pointed out the implications of these findings, indicating a pressing need for collaborative efforts to enhance the transition process and improve overall patient experiences.

These two studies collectively highlight the persistent difficulties faced by young adults with pediatric rheumatological conditions, underscoring the necessity for healthcare practitioners to work in concert to elevate patient care and outcomes.