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Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation.
Uzark, Karen; Zak, Victor; Shrader, Peter; McCrindle, Brian W; Radojewski, Elizabeth; Varni, James W; Daniels, Kaitlyn; Handisides, Jill; Hill, Kevin D; Lambert, Linda M; Margossian, Renee; Pemberton, Victoria L; Lai, Wyman W; Atz, Andrew M.
Afiliação
  • Uzark K; University of Michigan Mott Children's Hospital, Ann Arbor, MI. Electronic address: karenu@med.umich.edu.
  • Zak V; New England Research Institutes, Watertown, MA.
  • Shrader P; New England Research Institutes, Watertown, MA.
  • McCrindle BW; University of Toronto Hospital for Sick Children, Toronto, Ontario, Canada.
  • Radojewski E; University of Toronto Hospital for Sick Children, Toronto, Ontario, Canada.
  • Varni JW; Texas A & M University, College Station, TX.
  • Daniels K; Children's Hospital of Philadelphia, Philadelphia, PA.
  • Handisides J; Boston Children's Hospital, Boston, MA.
  • Hill KD; Duke University Medical Center, Durham, NC.
  • Lambert LM; Primary Children's Hospital, Salt Lake City, UT.
  • Margossian R; Boston Children's Hospital, Boston, MA.
  • Pemberton VL; National Heart, Lung, and Blood Institute, Bethesda, MD.
  • Lai WW; Columbia University Medical Center, New York, NY.
  • Atz AM; Medical University of South Carolina, Charleston, SC.
J Pediatr ; 170: 166-72.e1, 2016 Mar.
Article em En | MEDLINE | ID: mdl-26685073
OBJECTIVES: To assess self-reported quality of life (QOL) in a large multicenter cohort of adolescent and young adults surviving Fontan. STUDY DESIGN: Cross-sectional. The Pediatric Quality of Life Inventory (PedsQL) was administered to 408 survivors of Fontan ages 13-25 years enrolled in the Pediatric Heart Network Fontan Follow-up Study. Subjects also completed either the Child Health Questionnaire (age <19 years) or Short Form Health Survey (age ≥ 19 years). PedsQL data were compared with matched controls without a chronic health condition. Correlations between the measures were examined. RESULTS: Mean PedsQL scores for subjects receiving Fontan were significantly lower than those for the control group for physical and psychosocial QOL (P < .001). Overall, 45% of subjects receiving Fontan had scores in the clinically significant impaired range for physical QOL with 30% in the impaired range for psychosocial QOL. For each 1 year increase in age, the physical functioning score decreased by an average of 0.76 points (P = .004) and the emotional functioning score decreased by an average of 0.64 points (P = .03). Among subjects ≥19 years of age, the physical functioning score decreased by an average of 2 points for each year increase in age (P = .02). PedsQL scale scores were significantly correlated with conceptually related Child Health Questionnaire (P < .001) and Short Form Health Survey scores (P < .001). CONCLUSIONS: Survivors of Fontan are at risk for significantly impaired QOL which may decline with advancing age. Routine assessment of QOL is essential to inform interventions to improve health outcomes. The PedsQL allowed QOL assessment from pediatrics to young adulthood. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00132782.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Técnica de Fontan Tipo de estudo: Clinical_trials / Observational_studies / Prevalence_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Aspecto: Patient_preference Limite: Adolescent / Adult / Female / Humans / Male País/Região como assunto: America do norte Idioma: En Revista: J Pediatr Ano de publicação: 2016 Tipo de documento: Article País de publicação: Estados Unidos
Texto completo
Adicionar na Minha BVS
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Técnica de Fontan Tipo de estudo: Clinical_trials / Observational_studies / Prevalence_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Aspecto: Patient_preference Limite: Adolescent / Adult / Female / Humans / Male País/Região como assunto: America do norte Idioma: En Revista: J Pediatr Ano de publicação: 2016 Tipo de documento: Article País de publicação: Estados Unidos