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Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation.

Publication ,  Journal Article
Uzark, K; Zak, V; Shrader, P; McCrindle, BW; Radojewski, E; Varni, JW; Daniels, K; Handisides, J; Hill, KD; Lambert, LM; Margossian, R ...
Published in: J Pediatr
March 2016

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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Published In

J Pediatr

DOI

EISSN

1097-6833

Publication Date

March 2016

Volume

170

Start / End Page

166 / 72.e1

Location

United States

Related Subject Headings

  • Young Adult
  • United States
  • Survivors
  • Surveys and Questionnaires
  • Quality of Life
  • Pediatrics
  • Male
  • Humans
  • Fontan Procedure
  • Follow-Up Studies
 

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Uzark, K., Zak, V., Shrader, P., McCrindle, B. W., Radojewski, E., Varni, J. W., … Pediatric Heart Network Investigators, . (2016). Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation. J Pediatr, 170, 166-72.e1. https://doi.org/10.1016/j.jpeds.2015.11.016
Uzark, Karen, Victor Zak, Peter Shrader, Brian W. McCrindle, Elizabeth Radojewski, James W. Varni, Kaitlyn Daniels, et al. “Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation.J Pediatr 170 (March 2016): 166-72.e1. https://doi.org/10.1016/j.jpeds.2015.11.016.
Uzark K, Zak V, Shrader P, McCrindle BW, Radojewski E, Varni JW, et al. Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation. J Pediatr. 2016 Mar;170:166-72.e1.
Uzark, Karen, et al. “Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation.J Pediatr, vol. 170, Mar. 2016, pp. 166-72.e1. Pubmed, doi:10.1016/j.jpeds.2015.11.016.
Uzark K, Zak V, Shrader P, McCrindle BW, Radojewski E, Varni JW, Daniels K, Handisides J, Hill KD, Lambert LM, Margossian R, Pemberton VL, Lai WW, Atz AM, Pediatric Heart Network Investigators. Assessment of Quality of Life in Young Patients with Single Ventricle after the Fontan Operation. J Pediatr. 2016 Mar;170:166–72.e1.
Journal cover image

Published In

J Pediatr

DOI

EISSN

1097-6833

Publication Date

March 2016

Volume

170

Start / End Page

166 / 72.e1

Location

United States

Related Subject Headings

  • Young Adult
  • United States
  • Survivors
  • Surveys and Questionnaires
  • Quality of Life
  • Pediatrics
  • Male
  • Humans
  • Fontan Procedure
  • Follow-Up Studies