Evaluating the needs of young people
—
Adolescents and young adults with chronic diseases need special care – and paediatric rheumatological conditions can persist into adulthood. New work presented at the 2025 congress of EULAR – The European Alliance of Associations for Rheumatology – considers the training that healthcare 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 for adolescents and young adults with juvenile idiopathic arthritis (JIA). Data from 1,913 patients aged range 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, constraint of the disease, normalizing illness, and lack of mental support were found to be important. Anxiety was significantly higher in people with JIA than 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 personalised 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 in 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 UK 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 healthcare 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 the 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 healthcare providers, especially for patients with complex needs that require multiple specialist services – a challenge made worse by difficult transitions from paediatric 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 paediatric rheumatological conditions experience across their lifespan, and could be useful for clinicians in finding ways to work together to improve experiences and outcomes.

Source
Hecquet S, et al. Unmet needs of adolescents and young adults with juvenile idiopathic arthritis: a systematic review. Presented at EULAR 2025; OP0242. Ann Rheum Dis 2025; DOI: 10.1136/annrheumdis-2025-eular.B2134

Kupiec K, Livermore P. “How will my illness impact my future’’: Young Adults’ experiences, and challenges of living with a chronic paediatric rheumatological condition. Presented at EULAR 2025; POS0337-HPR. Ann Rheum Dis 2025; DOI: 10.1136/annrheumdis-2025-eular.C116