title: Pediatric health-related quality of life: Feasibility, reliability and validity of the PedsQL transplant module.
abstract: The measurement properties of the newly developed Pediatric Quality of Life Inventory (PedsQL) 3.0 Transplant Module in pediatric solid organ transplant recipients were evaluated. Participants included pediatric recipients of liver, kidney, heart and small bowel transplantation who were cared for at seven medical centers across the United States and their parents. Three hundred and thirty-eight parents of children ages 2-18 and 274 children ages 5-18 completed both the PedsQL 4.0 Generic Core Scales and the Transplant Module. Findings suggest that child self-report and parent proxy-report scales on the Transplant Module demonstrated excellent reliability (total scale score for child self-report alpha= 0.93; total scale score for parent proxy-report alpha= 0.94). Transplant-specific symptoms or problems were significantly correlated with lower generic HRQOL, supporting construct validity. Children with solid organ transplants and their parents reported statistically significant lower generic HRQOL than healthy children. Parent and child reports showed moderate to good agreement across the scales. In conclusion, the PedsQL Transplant Module demonstrated excellent initial feasibility, reliability and construct validity in pediatric patients with solid organ transplants.
authors.affiliation: Department of Child and Adolescent Psychiatry, Children's Memorial Hospital, Chicago, IL, USA. jwbenchell@childrensmemorial.org
authors.forename: J
authors.initials: J
authors.lastname: Weissberg-Benchell
authors.forename: T E
authors.initials: TE
authors.lastname: Zielinski
authors.forename: S
authors.initials: S
authors.lastname: Rodgers
authors.forename: R N
authors.initials: RN
authors.lastname: Greenley
authors.forename: D
authors.initials: D
authors.lastname: Askenazi
authors.forename: S L
authors.initials: SL
authors.lastname: Goldstein
authors.forename: E M
authors.initials: EM
authors.lastname: Fredericks
authors.forename: S
authors.initials: S
authors.lastname: McDiarmid
authors.forename: L
authors.initials: L
authors.lastname: Williams
authors.forename: C A
authors.initials: CA
authors.lastname: Limbers
authors.forename: K
authors.initials: K
authors.lastname: Tuzinkiewicz
authors.forename: S
authors.initials: S
authors.lastname: Lerret
authors.forename: E M
authors.initials: EM
authors.lastname: Alonso
authors.forename: J W
authors.initials: JW
authors.lastname: Varni
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005240:Feasibility Studies; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D016377:Organ Transplantation / Q000502:physiology* / Q000523:psychology; D010290:Parents / Q000523:psychology; D002666:Psychology, Child; D011788:Quality of Life; D015203:Reproducibility of Results; D014481:United States