title: Health-related quality of life and family function following pediatric liver transplantation.
abstract: This multicenter study compared health-related quality of life (HRQOL) and family function of pediatric liver transplant recipients to those of healthy children to determine if this population differed from a healthy population and to distinguish which pretransplant and posttransplant factors impact HRQOL and family function. HRQOL data from 102 patients achieving 2-year survival were collected with the Infant Toddler Quality of Life Instrument or the Child Health Questionnaire Parent Form 50 parent surveys. Family functioning was assessed with the Family Assessment Device (FAD) completed by each participant's family members. Demographic and clinical information were retrieved from the Studies of Pediatric Liver Transplant database. Recipients 5 years of age and older scored lower than a normative sample in physical health (P < 0.001), general health (P < 0.001), parental emotional impact (P < 0.001), and disruption of family activities (P < 0.001). Younger children, 2 to 5 years of age, scored lower than controls in global health (P = 0.004) and general health perceptions (P < 0.001) but did not differ in subscales measuring physical and psychosocial outcomes. Univariate analysis among the subscales identified demographic but not clinical variables as significant predictors of HRQOL. Mean scores of FAD scales were below published thresholds indicating healthy family functioning. As reported in previous studies, parents of older recipients reported higher levels of stress, although their level of family function appears normal. Significant associations were also observed between FAD scores and demographic variables, suggesting that further investigation of the impact of race, parental marital status, and socio-economic status on the patient rehabilitation process is needed.
authors.affiliation: Children's Memorial Hospital, Chicago, IL 60614, USA. e-alonso@northwestern.edu
authors.forename: Estella M
authors.initials: EM
authors.lastname: Alonso
authors.forename: Katie
authors.initials: K
authors.lastname: Neighbors
authors.forename: Franca B
authors.initials: FB
authors.lastname: Barton
authors.forename: Sue V
authors.initials: SV
authors.lastname: McDiarmid
authors.forename: Stephen P
authors.initials: SP
authors.lastname: Dunn
authors.forename: George V
authors.initials: GV
authors.lastname: Mazariegos
authors.forename: Jeanne M
authors.initials: JM
authors.lastname: Landgraf
authors.forename: John C
authors.initials: JC
authors.lastname: Bucuvalas
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D004644:Emotions; D005190:Family; D005260:Female; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D016031:Liver Transplantation / Q000502:physiology* / Q000523:psychology*; D008297:Male; D010287:Parent-Child Relations; D011788:Quality of Life; D011795:Surveys and Questionnaires