The impact of juvenile idiopathic arthritis on adolescents and young adults: a qualitative study

Background: Children and young people with juvenile idiopathic arthritis (JIA) have emphasised concerns about the extent to which factors beyond inflammation affect their daily lives and the absence of services to respond appropriately to their fears and challenges. Currently no studies have qualitatively explored the perceived impact of JIA on the daily lives of those aged 16-25 with JIA under the care of a rheumatologist, which was the aim of this study. Methods: Semi-structured interviews with 15 participants were conducted as part of a larger mixed-methods project with JIA patients aged 16-25 attending rheumatology clinics at a hospital in South East England. Open-ended questions were asked about problematic areas and their direct experiences that impacted most on their lives, due to JIA. Interviews were recorded, anonymised, transcribed and analysed using inductive thematic analysis. Ethical/R&D approvals and written informed consent were obtained. Results: Participants were predominantly female (10/15), White British (5/15) aged 16-25 (mean age 19.92, SD 2.70). Mean duration of disease was 12 years (range 4-18 years) with enthesis-related and polyarticular subtypes as the most common (both 6/15). The majority (12/15) had inactive disease. The top areas chosen by young people as being most impacted upon were: fatigue (9/15), mood (8/15), social aspects (8/15), pain and stiffness (6/15) and impairments in functioning (5/15); either reflecting back on periods of active disease or currently now when in remission. The emotional impact related to low mood as well as anxiety, stress and changes to temperament whilst the impaired functioning was associated with inability to carry out activities, physically (e.g. dressing due to soreness or playing sports due to lack of strength) and socially (e.g. meeting up with friends or going to parties). Other restrictions to social life included feelings of isolation and problems with relationships with friends, family and professionally. Additional areas discussed were quality of life, education, taking medications, sleep, and ability to work, home management and future outlook. Potential relationships between these areas were also mentioned, such as the changes to mood being linked to physical pain, impairments in functioning, social restrictions and having to take medications thus preventing them from living as a normal young person. Conclusion: The impact of arthritis on young people many years after diagnosis appears to be multi-faceted and interlinked. The emotional, physical, psychological, and educational/vocational impacts mentioned by young people occur during periods of active disease but also persist during remission. These long term impacts need to be considered and monitored by healthcare professionals to ensure developmentally appropriate holistic management during the transition to adulthood.