A UK study: vocational experiences of young adults with juvenile idiopathic arthritis

UK Background: Little is known about the experiences of young adults living with Juvenile Idiopathic Arthritis (JIA) preparing for employment and career development. Objectives: The purpose of this study was to understand the impact JIA has on career planning and early employment experiences of young adults (16 – 30 years). Methods: Using existing literature (including grey literature), an online survey (consisted of 152 questions, 29 items related to young adults two of which were free text questions) was developed and sent to UK National Rheumatoid Arthritis Society (NRAS) members and distributed to non-members via social media tools including Facebook, Twitter and HealthUnlocked. Data collected included views and experiences in career planning and employment. The data pertaining to young adultsare presentedhere. Results: Of 1241 respondents 19 were young adults with JIA (range 16 – 30 years), 89% were female and 84% haduniversity or equivalent qualifications. Due to incomplete responses there is missing data on all 19 young adults. 4/13 young adults were studying at university, 9/13 were in paid employment. 9/17 respond-ents reported their school did not offer additional work-related activities to students with disabilities and/or additional needs. 10/14 young adults felt their school did not provide advice about coping with possible limitations on placements/train-eeships due to their arthritis. 11/14 respondents did consider their condition when thinking about future career plans e.g. “ I wanted to work as a ranger or similar for the

We commend Dr. Walter and colleagues [1] for their evaluation of a clinical transition pathway for young people with rheumatic and musculoskeletal diseases. Their work highlights a successful health transition model and as indicated in their findings, addresses some of the EULAR/PReS transitional care recommendations [2]. However we were interested to read the significant proportions of young people reporting a negative impact of their condition on education/vocational aspects of their lives [1]. By definition, transitional care should address vocational as well as medical, social and psychological issues as young people move into adult services.
We would like to draw your attention to our recent UK survey of 16+ year olds on this topic which included 19 young adults, (n = 17 female n = 17 white British) diagnosed with juvenile idiopathic arthritis [3]. Young people participating in a national survey, when in education, reported a lack of careers guidance. 8/14 respondents felt their school careers adviser did not take their condition into account when providing careers information/advice. Respondents reported the lack of support in schools for students with additional needs in planning their work experience; for example, 10/14 respondents reported a lack of information on possible limitations they may encounter on a work experience placement/ traineeship (Table 1).
Young people do take their condition into consideration when planning a career. 8/14 respondents changed their career path because of their condition reflecting the results reported by Walter et al. [1]. Reasons for this included the need to stay healthy, physical demands or to manage symptoms. It is unclear in our study if these changes were seen as positive or negative. However, as highlighted by Walter et al., some young people with rheumatic diseases perceive their condition to have a negative effect on their chosen vocation/career [1].
The EULAR/PReS standards highlight the need to implement a holistic approach to care, which includes vocational and career planning [2]. However, a study evaluating European paediatric rheumatology transitional care practice, found that approximately 36% used a transitional care checklist and only 50% of these addressed vocational readiness [4].
As indicated by Walter et al. and others [1,5], interventions are needed to better support young people with rheumatic conditions to improve transition outcomes. Further research in the UK is needed to explore how such transitional care can improve vocational outcomes. Finding the right first job is likely to influence young people's future employment prospects and career opportunities.

EULAR: European League Against Rheumatism; PReS: Pediatric Rheumatology European Society
Acknowledgements Not applicable.
Authors' contributions LEL analysed and interpreted the patient data regarding young adults with juvenile idiopathic arthritis and their vocational experiences. AB contributed to the conception and design of the work. MB contributed to the conception and design of the work. KWB contributed to the conception and design of the work. KLH interpreted the data and drafted the manuscript. WT interpreted the data and drafted the manuscript. JEM interpreted the data and was a major contributor in writing the manuscript. SMMV contributed to the conception and design of the work and was a major contributor in writing the manuscript. All authors read and approved the final manuscript.

Funding
This piece of work did not receive funding.

Availability of data and materials
The datasets generated and analysed during the current study are not publicly available, as consent to share publicly was not obtained by participants.