Background Recent decades have seen marked changes in the management of JIA, which have lead to improved clinical outcomes for many patients. However, unemployment rates for adults with JIA remain high compared to controls, highlighting the need to address young people’s vocational issues as an integral part of transitional care.
Objectives To describe experiences relating to work amongst adults with JIA (in adult continuity clinic) and current practice of recording discussion about employment within clinical consultations.
Methods Qualitative methods were used to analyse free text comments from a questionnaire about work status completed by consecutive adults with JIA attending an outpatient continuity clinic in 2011/12. The piloted questionnaire was developed using instruments from an earlier study. Using a pro forma, a case note review was performed of 30 consecutive patients, aged ≤30 years, attending the same JIA continuity clinic during a 3 month period in 2012/13.
Results Questionnaire respondents (n=103). [Female 79%(n=81), median age 24 years (range17-71), median disease duration 19 years (range7-67)]. 64%(n=66) of respondents were in employment and of those 48%(n=32) reported JIA impacting on their employment. The key themes generated from questionnaire free text responses were: absenteeism and presenteeism; disclosure about the diagnosis; effect of JIA on career choice and trajectory; discrimination in the workplace. Case note review (n=30). [Female 67%(n=20), median age 21 years (range18-30), median disease duration 15 years (range3-29)]. The clinician recorded education or employment status in 87%(n=26/30) of case notes. 46%(n=14) were students, with 40%(n=12) employed, 10%(n=3) unemployed and 1 home maker. For those in employment (n=12), the type of job was consistently recorded (100%), employer stated in 58%(n=7) and whether full or part time in 67%(n=8) of cases. Measures of vocational readiness were rarely documented, including work experience (12%, n=2/17) and career aspirations (18%, n=3/17), although these topics may have been discussed but not recorded.
Conclusions We identified 4 key themes which may be associated with poor employability for some young adults with JIA. These themes will inform further research into the experiences and challenges, both positive and negative, of young adults in relation to employment and employability. Case note review in our centre demonstrated basic recording of employment status but less so for work readiness indicators. Further work is underway to explore the role of the multidisciplinary team in supporting young adults to optimise their work outcomes and how this may be optimally recorded in the case notes as part of busy clinical consultations.
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Disclosure of Interest None Declared