Abstract
BackgroundRheumatic diseases of childhood, in particular juvenile idiopathic arthritis, are chronic conditions associated with considerable morbidity and mortality that can have repercussions on aspects of adult life. The aim of this study was to determine the employment rate and social status of patients with childhood-onset rheumatic disease attending a pediatric rheumatology transition unit.MethodsA census was taken of patients seen in the Pediatric Rheumatology Transition Unit of Hospital Vall d’Hebron (Barcelona, Spain). We collected demographic and clinical variables and determined the patients’ functional capacity. All patients seen during the period of September to December 2013 underwent a survey containing items related to their social situation, maximum academic level achieved, and working life. Correlations were sought between clinical variables associated with a poor prognosis and the patients’ job performance. The data were analyzed and compared with those of an age-matched cohort from the general population of Catalonia.ResultsOf 130 patients included in the census, 96 responded to the survey. Steinbrocker grade III and IV disability (poorer functional capacity) (p = 0.0025) and longer disease duration (p = 0.017) were significantly related to greater difficulty getting a job. Patients with grade III and IV disability and those with more severe disease showed trends to having more problems carrying out work-related tasks. Our cohort included a higher percentage of students than the age-matched comparison population (50 % vs 24 %, respectively) (p = 0.0001); 82 % of patients had completed studies beyond the compulsory education level. The employment rate was lower in our patient cohort than in the comparison cohort (38.3 % vs 59.9 %) (p = 0.0001), whereas the percentage of unemployed was similar. Patients with milder disease had a higher probability of living with their parents up to a later age (OR = 3.2, 95 % CI 0.38-6.15; p = 0.029).ConclusionsDespite the advances in treatment, some patients with childhood-onset rheumatic disease encounter difficulties in their later social and working life. In our cohort, the time period needed to complete their studies tended to be longer, and incorporation into the workforce occurred at a later age. Our findings reinforce the idea that psychological support and vocational guidance are important factors in the management of these patients.
Highlights
Rheumatic diseases of childhood, in particular juvenile idiopathic arthritis, are chronic conditions associated with considerable morbidity and mortality that can have repercussions on aspects of adult life
Studies published in the last two decades have reported divergent results, in patients with juvenile idiopathic arthritis (JIA). These studies were performed in several countries having different cultures and healthcare systems, which may explain some of the differences
JIA was the most common condition in the cohort, accounting for 67 cases (51.5 %), followed by spondyloarthropathies with 28 cases (21.5 %), and autoinflammatory syndromes with 11 cases (8 %); 24 patients (18.5 %) had diseases other than those mentioned (Others)
Summary
In particular juvenile idiopathic arthritis, are chronic conditions associated with considerable morbidity and mortality that can have repercussions on aspects of adult life. Studies published in the last two decades have reported divergent results, in patients with juvenile idiopathic arthritis (JIA). The purpose of transition units is to provide guidance for patients and their families so that affected adolescents will become independent adults who actively participate in maintaining their health and are fully integrated in society [3]. Implementation of these units in pediatric rheumatology departments yields clear benefits for patients with childhood-onset rheumatic diseases, JIA, as has been reported in several studies. Transition units should be recognized as a criterion of quality and be included in all rheumatology departments devoted to pediatric patients or adults [2]
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