{
  "abstract": "Background Living with a rheumatological condition can be challenging, and children and young people may struggle to accept their chronic illness, which can impact their mental health. Supporting successful management of paediatric rheumatological conditions is crucial in helping young people self-manage as they transition from paediatric to adult care.Aim The aim of the study was to explore children, young people’s (YP) and young adults’ (YA) experiences of paediatric rheumatological conditions, and to understand the difference in priorities throughout developmental stages.Method There were 7 focus groups based on age, with approximately 3-5 children, YP or YAs in each group. An age-matched steering group member helped facilitate the sessions. Creative methods were used with the child groups, scenarios for the YP, whereas YA groups were semi-structured questioning. Inductive Thematic Analysis was used to analyse the data. 1 Results A total of 25 participants (aged 8-29; M age = 15.57; SD age = 6.36; 72% female) joined a focus group. Participants had a range of rheumatological conditions: 32% JIA, 16% JDM, 16% SLE and 36% rarer diagnoses. Differences in themes identified: Children discussed how to make sense of the condition and develop coping strategies to manage treatment, YP reflected on long-term implications, uncertainty, schooling, and peer support, YAs highlighted how long-term planning is essential to help them aspire to their everyday life and future career goals.Conclusion As children make sense of what their condition means to them and their everyday life, they start focusing on long-term implications as teenagers, but remain uncertain about what a chronic condition means for their future, only becoming more goal oriented as they get older. Future consideration should address how to motivate children, YP and YA to adhere to management plans and tailor support across developmental stages to help accomplish goals and improve quality of life.Acknowledgements for Funding or Support This study is funded by the National Institute for Health and Care Research (NIHR) [ACAF 302864]. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.Reference Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qualitative Psychology 2022 Feb;9(1):3.",
  "authors": [
    {
      "affiliations": [
        "UCL Great Ormond Street Institute of Child Health, UK"
      ],
      "name": "Klaudia Kupiec"
    },
    {
      "affiliations": [
        "NIHR Great Ormond Street Hospital Biomedical Research Centre, UCL Great Ormond Street Institute of Child Health, UK"
      ],
      "name": "Polly Livermore"
    }
  ],
  "title": "97 ‘What I need as I grow up’: Identifying children’s, young people’s and young adults’ priorities in paediatric rheumatology across the lifespan",
  "uid": "69aa49e7-3e02-57e4-86e0-f4803ce1bd01"
}