Translation, transcultural adaptation, and validation of PedsQL 3.0 Sickle Cell Disease Module into Brazilian Portuguese.

Autor: Olival MG; Clinical Hematology and Research Division, Instituto de Hematologia Arthur de Siqueira Cavalcanti--HEMORIO, Rio de Janeiro, Rio de Janeiro, Brazil., Vilela TS; Pediatric Hematology Sector, Pediatrics Department, Federal University of Sao Paulo, Sao Paulo, Sao Paulo, Brazil., Hankins JS; Departments of Global Pediatric Medicine and Hematology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA., Bendo CB; Department of Pediatric Dentistry, Faculty of Dentistry, Federal University of Minas Gerais, Belo Horizonte, Minas Gerais, Brazil., Lobo CL; Clinical Hematology and Research Division, Instituto de Hematologia Arthur de Siqueira Cavalcanti--HEMORIO, Rio de Janeiro, Rio de Janeiro, Brazil., Maioli MCP; Hematology Service, Pedro Ernesto University Hospital/Medical Sciences Faculty/Rio de Janeiro State University, Rio de Janeiro, Rio de Janeiro, Brazil., Bandeira FM; Hematology Service, Pedro Ernesto University Hospital/Medical Sciences Faculty/Rio de Janeiro State University, Rio de Janeiro, Rio de Janeiro, Brazil., Werneck GL; Department of Epidemiology, Social Medicine Institute/Rio de Janeiro State University, Rio de Janeiro, Rio de Janeiro, Brazil., Soares AR; Hematology Service, Pedro Ernesto University Hospital/Medical Sciences Faculty/Rio de Janeiro State University, Rio de Janeiro, Rio de Janeiro, Brazil.
Jazyk: angličtina
Zdroj: Pediatric blood & cancer [Pediatr Blood Cancer] 2024 Apr; Vol. 71 (4), pp. e30862. Date of Electronic Publication: 2024 Jan 29.
DOI: 10.1002/pbc.30862
Abstrakt: Introduction: Despite the high prevalence of sickle cell disease (SCD) in Brazil, no studies have described the validation of an SCD-specific health-related quality-of-life (HRQoL) instrument in children. We validated PedsQL 3.0 Sickle Cell Disease Module (PedsQL-SCD) for Brazilian Portuguese, and cross-validated it with PedsQL 4.0 Generic Core Scale (PedsQL-GCS) in children with SCD.
Methods: PedsQL-SCD was translated and culturally adapted using forward and reverse translations. PedsQL-SCD and PedsQL-GCS were tested in children and adolescents with SCD aged 2-18 years and their caregivers. Validity was assessed using the Pearson and intraclass correlation coefficients, and reliability measured with Cronbach's alpha.
Results: PedsQL-SCD was validated in 206 children with SCD (median age 14 years, range: 8-18) and 201 caregivers. Among patients and caregivers, the mean total score for PedsQL-SCD was 65.7 and 64.1, respectively. The mean total score for PedsQL-GCS was 73.1 and 68.9 among patients and caregivers, respectively. The internal consistency for PedsQL-SCD and PedsQL-GCS was good; Cronbach's alpha coefficients ranged from .59-.93 to .64-.83 among patients and from .60-.95 to .65-.85 among caregivers, respectively. Most intercorrelations between PedsQL-SCD and PedsQL-GCS, for patients and caregivers, had medium to large effect sizes (range: .23-.63 and .27-.64, respectively). Pain and pain impact domains of PedsQL-SCD and physical dimension of PedsQL-GCS had the highest cross-correlation (.63 and .6 for patients; .63 and .64 for caregivers, respectively), confirming convergent construct validity.
Conclusion: PedsQL-SCD is a valid, culturally appropriate measure to assess HRQoL in children with SCD in Brazil and is well-correlated PedsQL-GCS.
(© 2024 Wiley Periodicals LLC.)
Databáze: MEDLINE
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