Background: Young adults with paediatric-onset rheumatological conditions face numerous challenges, beginning at the time of diagnosis in childhood or adolescence as they navigate the adjustment to a ‘new normal’. Living with a rheumatological condition is often associated with frequent hospital appointments which can significantly impact educational attainment, school attendance and peer relationships. The demands of coping with a chronic health condition, along with complex treatment regimens presents ongoing challenges for both CYP and their families. Additionally, CYP with rheumatological conditions experience higher levels of pain, fatigue, physical disability and psychological distress compared to their healthy peers [1, 2]. Moreover, these challenges can continue into early adulthood and beyond. Understanding the perspectives and experiences of young adults is crucial for providing support throughout their lifespan and enhancing their overall health and well-being. To date, the majority of research in this age group has focused on supporting and improving healthcare transition services for young people. This has primarily involved enhancing their experiences as they move from paediatric to adult care by addressing their medical needs and promoting self-management strategies. However, the current study shows that more attention needs to be directed to social, emotional as well as educational and occupational aspects to allow young adults to live successful lives and feel empowered to achieve their future goals.

Objectives: The IMPACT study is a large four phased UK wide study to design, develop and test a technology intervention to support families of children and young people with rheumatological conditions. The study follows Experience Based Co-Design Methodology where the patients and their families help shape the study, from initial concept through to final dissemination. Understanding their perspectives is essential to ensure that the technology developed is both beneficial and usable.

Methods: As part of the first phase of this study we invited children, young people, young adults, parents and healthcare professionals to share with us their experiences and perspectives in focus groups. We wanted to understand their particular barriers and facilitators to good care for all paediatric rheumatological diseases, at all ages. Although, originally, we did not plan any young adult focus groups, these were established due to demand. The focus groups were offered as either face-to-face or virtual, at a time convenient to each participant. The child and young person groups talked through a vignette to save each child needing to feel they needed to share their own experiences. The other groups had minimal structure and were led by both the research team and in most instances a member of the Steering Group, made up of children, young people, parents and health care professionals. Thematic analysis by Braun and Clark [3] was used to analyse the data.

Results: We conducted 27 focus groups with 174 participants between December 2023 and May 2024. As young adults offered their perspectives, we ultimately organized two groups, involving a total of 8 participants (aged 21-29 years) with diverse rheumatological conditions (JDM = 3; SLE and Mixed connective tissue disease = 3; JIA = 2). Themes arising from the young adult focus groups included: (1) school, university and vocational support, (2) knowing your rights, (3) need for better understanding of side effects from medications, (4) support and information for siblings and partners, (5) communication strategies to help in clinical care. They emphasized how decisions are often shaped by the availability of healthcare providers, especially for those with complex needs requiring multiple specialist services, a challenge further exacerbated by previous difficult transition experiences. They spoke about often not knowing their rights and what support they can ask for as well as which medical decisions they can challenge when they know that a particular treatment is not right for them. They talked about how sometimes they feel like they are not heard and having to retell their story repeatedly which they found unnecessarily stressful. Moreover, they expressed concerns for their siblings who may feel ‘’neglected’’ by being less of a priority especially around times of prolonged hospital admissions of the ill child. Additionally, they spoke about a need for resources for their partners who often did not understand what they were going through.

Conclusion: Young adults shared their challenges with transitioning from paediatric to adolescent and adult care, highlighting the significant impact this has on their future planning, particularly when considering university. Whilst the number of young adult participants was small, including a range of conditions increased the voices and applicability to others. This research highlights the ongoing challenges that young adults living with paediatric rheumatological conditions experience across the lifespan and offers suggestions for clinicians about how we can continue to work together to improve experiences and outcomes.

REFERENCES: [1] Shaw KL, Southwood TR, Duffy CM, McDonagh JE. Health‐related quality of life in adolescents with juvenile idiopathic arthritis. Arthritis Care & Research: Official Journal of the American College of Rheumatology. 2006 Apr 15;55(2):199-207.

[2] Jones JT, Cunningham N, Kashikar‐Zuck S, Brunner HI. Pain, fatigue, and psychological impact on health‐related quality of life in childhood‐onset lupus. Arthritis care & research. 2016 Jan;68(1):73-80.

[3] Braun V, Clarke V. One size fits all? What counts as quality practice in (reflexive) thematic analysis?. Qualitative research in psychology. 2021 Jul 3;18(3):328-52.

Acknowledgements: We would like to express gratitude to the IMPACT steering group for their support throughout this project and all the children, young people and parents as well as healthcare professionals who took part. We look like to thank our local charities who helped with this project. We would also like to express our appreciation to the NIHR (National Institute for Health and Care Research) for their grant and the GOSH BRC for all their support.

Disclosure of Interests: None declared.

© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.