Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain
Calvo Penadés, Inmaculada (Hospital Universitari i Politècnic La Fe (València))
Moreno Ruzafa, Estefanía (Hospital Universitari Vall d'Hebron)
Calzada-Hernández, Joan (Institut de Recerca San Joan de Déu)
Mosquera Angarita, Juan (Institut de Recerca San Joan de Déu)
López Montesinos, Berta (Hospital Universitari i Politècnic La Fe (València))
Bou, Rosa (Institut de Recerca San Joan de Déu)
López-Corbeto, Mireia (Hospital Universitari Vall d'Hebron)
Sánchez-Manubens, Judith (Parc Taulí Hospital Universitari. Institut d'Investigació i Innovació Parc Taulí (I3PT))
González Fernández, María Isabel (Hospital Universitari i Politècnic La Fe (València))
Carriquí Arenas, Sonia (Institut de Recerca San Joan de Déu)
Bittermann, Violeta (Institut de Recerca San Joan de Déu)
Estepa Guillén, Carolina (Hospital Sant Joan de Déu (Esplugues de Llobregat, Catalunya))
Rodríguez Díez, Lucía (Hospital Sant Joan de Déu (Esplugues de Llobregat, Catalunya))
Iglesias, Estíbaliz (Institut de Recerca San Joan de Déu)
Marti Masanet, Miguel (Hospital Universitari i Politècnic La Fe (València))
LaCruz Pérez, Lucía (Hospital Universitari i Politècnic La Fe (València))
Peral, Carmen (Pfizer)
De Lossada, Alfonso (Pfizer)
Valderrama, Mónica (Pfizer)
Llevat, Noelia (Pfizer)
Montoro, María (Pfizer)
Antón, Jordi (Universitat de Barcelona)
Universitat Autònoma de Barcelona

Date:	2024
Abstract:	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.
Rights:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, i la comunicació pública de l'obra, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original. No es permet la creació d'obres derivades.
Language:	Anglès
Document:	Article ; recerca ; Versió publicada
Published in:	Pediatric rheumatology online journal, Vol. 22 Núm. 1 (december 2024) , p. 102, ISSN 1546-0096

DOI: 10.1186/s12969-024-01035-6
PMID: 39593042

12 p, 2.4 MB

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Research literature > UAB research groups literature > Research Centres and Groups (research output) > Health sciences and biosciences > Parc Taulí Research and Innovation Institute (I3PT
Articles > Research articles
Articles > Published articles