Background Juvenile Idiopathic Arthritis (JIA) is a common form of chronic arthritis in children, diagnosed under the age of 16.1 It is a long-term condition (LTC) characterised by several clinical and humanistic features, and is recognised in contributing to a reduction in quality of life amongst children and young people (CYP).2 Previous research has identified parental concerns about JIA; however, it is important to identify the concerns of CYP in order to address unmet needs in healthcare provision and support.
Objectives To identify the top concerns of CYP with JIA. The results of the survey will inform future research to address any issues raised. There will also be a comparison to previous research conducted by Douglas et al. regarding the top concerns of parents of CYP with JIA. The project was lead by two patients with JIA who are now consumer representatives.
Methods The study sample included CYP with JIA (aged 8 to 24, based on World Health Organisation definitions). Qualitative research was carried out in the form of electronic and paper-based surveys distribted via charity group workshops and social media. The top concerns and the healthcare experience of CYP with JIA was identified. Insights analysis was ongoing at the time of submission.
Results In addition to responses from patients aged 8 to 24, insights were generated from younger and older patients, as well as parents. These will be reported as supplementary findings. Most CYP identified the survey via social media. Approximately three-times as many female patients responded, compared to males. The top concerns generated were grouped into overarching themes, including: long-term disease effects, a fear of being labelled as “different”, isolation from others, pain and fatigue, restriction from “normal” activities, medication and school/working life. There were also some key themes about the hospital experience of CYP, including: transition, continuity of care, the clinical environment, ineffective treatments, transparency, disease awareness and lack of support groups. There were also responses from England, Scotland, Northern Ireland and the United States of America, demonstrating some of the differences in care provision across different healthcare services.
Conclusions It is evident that CYP have meaningful experience of the day-to-day burden of living with JIA, providing an essential understanding of what patients identify as priorities. The results from the survey will help to suggest further research, with an aim of developing interventions to address these concerns. Following a full analysis of the survey, this research will continue to work with CYP, families and professionals to improve the experience of CYP living with JIA.
Weiss JE, Luca NJC, Boneparth A, Stinson J. (2014). Assessment and Management of Pain in Juvenile Idiopathic Arthritis. Pediatric Drugs. 16(6): 473-481.
Haverman L, Grootenhuis MA, van den Berg JM, van Veenendaal M, Dolman KM, Swart JF, Kuijpers TW, van Rossum MAJ. (2012). Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: Results from a web-based survey. Arthritis Care & Research. 64(5): 694-703.
Acknowledgements JIA Facebook groups, Arthritis Care Northern Ireland, Scottish Network for Arthritis in Children, Children's Chronic Arthritis Association, all other JIA charities in the UK and Ireland.
Disclosure of Interest None declared