Background and Aims Functional disability and bodily pain seem to be the most important determinants of physical and psychosocial well-being in young people with juvenile idiopathic arthritis (JIA) into adulthood. Disease course and self-reported daily life experiences through adolescence, and health professionals’ guidance and counselling in the transition process to adult life are explored.
Method Telephone interviews based on a questionnaire including open-ended and closed questions among 51 informants as part of a second follow-up of a Norwegian cohort of patients with JIA 18.4 years after symptom onset. Descriptive statistics were used to analyse quantitative data. Data from the open-ended questions were categorised and quantified manually.
Results Main findings are the high frequency of symptoms related to JIA the previous year (70.6%) and disease residua (78.4%). A considerable proportion experienced limitations in education planning and job accessibility, yet 46 informants (90.2%) felt satisfactory in their study and/or job situation. More than 55% of the informants answered that they to some/great extent were informed about illness related issues. However, more than 70% answered ‘no’ when asked whether they had received counselling with regard to psychosocially related issues, and 70.6% stated that they had not been prepared for transfer to adult ward.
Conclusion JIA-related plagues and worries seem to impact the entire period of adolescence into adult life for a considerable proportion of the informants. Guidance and counselling should be formalised and should focus on both illness- and psychosocially related implications of the disease in young people with JIA.