Background JIA is a chronic disease. Transition from childhood to adulthood and socio-professional impact of the disease at adulthood deserve particular attention.
Objectives To describe JIA patients assessment of the transition period and their social and professional status in adulthood.
Methods Data were collected using an auto-questionnaire completed by JIA patients followed in 3 French paediatric rheumatology reference centres and having reached adulthood.
Results 353 patients were included. In 124 patients, the transfer to adult specialist occurred within one year after a pediatric preparation. Satisfaction was recorded in 43%. In 74 patients where the transfer occurred two years or more after the paediatric follow-up, only 20% were satisfied (p=0.002) Risk factors significantly linked to this issue were: discontinuity feeling (p<0.001), inadequate transition preparation (p=0.007), no recommendation to an adult rheumatologist by the paediatric team (p<0.001), inadequate choice of the transition period (p=0.004).
The patients had a higher academic level than the general French population: 44.3% of them had a diploma above bachelor, which is twice as much as in the general population (21.4%). The percentage of patients working as executive managers in our cohort was significantly higher (31.8%) than expected (10.4%), both for men (46.6% vs 13.1%) or women (24.4% vs 8.2%). Conversely, unemployment was lower in our cohort (7.2%) than in the general population (18.3%). However, 33.8% of the patients had already known at least a six-month unemployment period, which was not different from the national rates, adjusted for age and gender. More than a third of the patients (33.5%) had suffered reject or discrimination because of their disease, which was significantly greater than the expected rate in general population: 6.2% (p<10-3).
Factors associated to a poor quality of life (QOL) were height < -2SD (p<0.001), unemployment (p=0.012), uveitis (p=0.249), disease duration ≥15 years (p=0.022), female gender (p=0.001), discomfort during sexual life (p<0.001), follow-up mostly by a rheumatologist (p<0,001), treatment with steroids (p<0.001).
Conclusions A better transitional care program appears important to ensure patients confidence in the continuity of care from paediatrics to adulthood. Among important factors, the recommendation of a first adult rheumatologist by the paediatric team and the choice of the right time for transition were highlighted. JIA patients seem to have higher educational achievements and a professional integration above average. QOL at least partly depends on the quality of disease care: it is important to better control disease activity (active disease seems to be related to a poorer QOL, as assessed by patients who require to be followed in rheumatology or treated with steroids) and prevent sequelae (growth retardation, uveitis). Other factors deserve further analyses such as the high percentage of feeling of discrimination and the negative impact of being a woman regarding QOL.
Acknowledgements Work supported by the Foundation Wyeth-Pfizer pour l’enfant et l’adolescent
Disclosure of Interest None Declared
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.