Real-world psychosocial impact among patients with juvenile idiopathic arthritis and families in Spain
Por:
Calvo Penadés I, Moreno Ruzafa E, Calzada-Hernández J, Mosquera-Angarita JM, López Montesinos B, Bou-Torrent R, López Corbeto M, Sánchez-Manubens J, González Fernández MI, Carriqui S, Bittermann V, Estepa Guillén C, Rodriguez-Diez L, Iglesias-Jimenez E, Marti Masanet M, LaCruz Pérez L, Peral C, De Lossada A, Valderrama M, Llevat N, Montoro M and Anton-Lopez J
Publicada:
26 nov 2024
Ahead of Print:
26 nov 2024
Resumen:
BackgroundTo 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-alpha), according to routine clinical practice in Spain.Patients and methodsA 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 (TM)). 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.Patients and methodsA 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 (TM)). 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.ResultsOne 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 childs 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.ConclusionMost 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.
Filiaciones:
Calvo Penadés I:
Pediatric Rheumatology Unit. Hospital Universitario y Policlínico La Fe, La Fe Health Research Institute, Valencia, Spain
Moreno Ruzafa E:
Pediatric Rheumatology Section, Hospital Campus Universitari Vall d'Hebron, Barcelona, Spain
Calzada-Hernández J:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
Mosquera-Angarita JM:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
López Montesinos B:
Pediatric Rheumatology Unit. Hospital Universitario y Policlínico La Fe, La Fe Health Research Institute, Valencia, Spain
Bou-Torrent R:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
López Corbeto M:
Pediatric Rheumatology Section, Hospital Campus Universitari Vall d'Hebron, Barcelona, Spain
Sánchez-Manubens J:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
Universitat Autonoma Barcelona, Barcelona, Spain
Servei de Pediatria, Hospital Parc Taulí Sabadell, Barcelona, Spain
González Fernández MI:
Pediatric Rheumatology Unit. Hospital Universitario y Policlínico La Fe, La Fe Health Research Institute, Valencia, Spain
Carriqui S:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
Bittermann V:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Rodriguez-Diez L:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Iglesias-Jimenez E:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
Marti Masanet M:
Pediatric Rheumatology Unit. Hospital Universitario y Policlínico La Fe, La Fe Health Research Institute, Valencia, Spain
LaCruz Pérez L:
Pediatric Rheumatology Unit. Hospital Universitario y Policlínico La Fe, La Fe Health Research Institute, Valencia, Spain
Peral C:
Pfizer S.L.U, Alcobendas, Madrid, Spain
De Lossada A:
Pfizer S.L.U, Alcobendas, Madrid, Spain
Valderrama M:
Pfizer S.L.U, Alcobendas, Madrid, Spain
Llevat N:
Pfizer S.L.U, Alcobendas, Madrid, Spain
Montoro M:
Pfizer S.L.U, Alcobendas, Madrid, Spain
Anton-Lopez J:
Pediatric Rheumatology Department, Hospital San Joan de Déu, Barcelona, Spain
Institut de Recerca San Joan de Déu, Barcelona, Spain
Universitat Barcelona, Barcelona, Spain
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