Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain.
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BACKGROUND: To assess the psychosocial impact of moderate-severe juvenile idiopathic arthritis (JIA) on patients and their families, among those who had been treated with at least one anti-tumor necrosis factor (anti-TNF-α), according to routine clinical practice in Spain. PATIENTS AND METHODS: A 24-month observational, multicentric, cross-sectional and retrospective study was performed. Children diagnosed with JIA were enrolled at three tertiary-care Spanish hospitals. The study included children treated with biologic disease-modifying antirheumatic drugs (bDMARD) who participated in a previous study, the ITACA, and who continued follow-up in these pediatric rheumatology units. Patient health-related quality of life (HRQoL) was assessed using the Pediatric Quality of Life Inventory (PedsQL™). Caregivers completed an interview to gather information about school attendance, their children's participation in school and social activities, its impact on their jobs and social life and perceived psychosocial support. A descriptive statistical analysis of all the variables was performed. The Mann-Whitney-U test or Kruskall-Wallis H test were used to compare quantitative variables and Fisher's exact tests was used for qualitative variables. Tests were two-tailed with a significance level of 5%. The data were analyzed using SPSS V18.0 statistical software. RESULTS: One hundred and seven patients were included. Overall, patients were on inactive disease or low disease activity according to JADAS-71 score and had very low functional disability according to CHAQ score. Up to 94.4% of patients were receiving drug treatment, mainly with bDMARD in monotherapy (84.5%). Based on PedsQL, patients and parents referred a high HRQoL. School Functioning PedsQL domain achieved the lowest score. Work and social impact due to the child´s disease was greater for mothers than for fathers. The understanding of the disease was lower at school than in the with family and friends' environments. CONCLUSION: Most of the patients had a high HRQoL and had controlled disease activity, despite having a negative psychosocial impact on some of them and their families, mainly on school functioning. Children's disease seems to involve greater work and psychosocial impacts for mothers than for fathers of children affected by JIA.