Skip to main content

Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome.

Publication ,  Journal Article
Goldberg, CS; Hu, C; Brosig, C; Gaynor, JW; Mahle, WT; Miller, T; Mussatto, KA; Sananes, R; Uzark, K; Trachtenberg, F; Pizarro, C; Lewis, AB ...
Published in: Pediatrics
November 2019

OBJECTIVES: We measured behavioral, quality of life (QoL), and functional status outcomes for 6-year-old children with hypoplastic left heart syndrome enrolled in the Single Ventricle Reconstruction Trial. We sought to compare these outcomes with those in the normative population and to analyze risk factors for worse outcomes within the single-ventricle group. METHODS: Parent-response instruments included the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) (primary outcome), Behavior Assessment System for Children 2, Pediatric Quality of Life Inventory 4.0, and other measures of QoL and functional status. We compared subjects with those in the normative sample using 1-sample Wilcoxon rank tests and assessed outcome predictors using multivariable regression. RESULTS: Of 325 eligible patients, 250 (77%) participated. Compared with population norms, participants had lower scores on the Vineland-II motor skills domain (90 ± 17 vs 100 ± 15; P < .001), with 11% scoring >2 SDs below the normative mean. On nearly all major domains, more study subjects (3.3%-19.7%) scored outside the normal range than anticipated for the general population. Independent risk factors for lower Vineland-II scores included perioperative extracorporeal membrane oxygenation, male sex, use of regional cerebral perfusion, catheterization after stage 2 operation, visual problems, seizure history, and more complications after 2 years (R 2 = 0.32). Independent predictors of worse Behavior Assessment System for Children 2 (R 2 = 0.07-0.20) and Pediatric Quality of Life Inventory 4.0 (R 2 = 0.17-0.25) domain scores also included sociodemographic factors and measures of morbidity and/or greater course complexity. CONCLUSIONS: At 6 years, children with hypoplastic left heart syndrome had difficulty in areas of adaptive behavior, behavioral symptoms, QoL, and functional status. Principal risks for adverse outcomes include sociodemographic factors and measures of greater course complexity. However, models reveal less than one-third of outcome variance.

Duke Scholars

Altmetric Attention Stats
Dimensions Citation Stats

Published In

Pediatrics

DOI

EISSN

1098-4275

Publication Date

November 2019

Volume

144

Issue

5

Location

United States

Related Subject Headings

  • Surveys and Questionnaires
  • Quality of Life
  • Prospective Studies
  • Pediatrics
  • Male
  • Hypoplastic Left Heart Syndrome
  • Humans
  • Female
  • Child Behavior Disorders
  • Child Behavior
 

Citation

APA
Chicago
ICMJE
MLA
NLM
Goldberg, C. S., Hu, C., Brosig, C., Gaynor, J. W., Mahle, W. T., Miller, T., … PHN INVESTIGATORS, . (2019). Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome. Pediatrics, 144(5). https://doi.org/10.1542/peds.2019-1010
Goldberg, Caren S., Chenwei Hu, Cheryl Brosig, J William Gaynor, William T. Mahle, Thomas Miller, Kathleen A. Mussatto, et al. “Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome.Pediatrics 144, no. 5 (November 2019). https://doi.org/10.1542/peds.2019-1010.
Goldberg CS, Hu C, Brosig C, Gaynor JW, Mahle WT, Miller T, et al. Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome. Pediatrics. 2019 Nov;144(5).
Goldberg, Caren S., et al. “Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome.Pediatrics, vol. 144, no. 5, Nov. 2019. Pubmed, doi:10.1542/peds.2019-1010.
Goldberg CS, Hu C, Brosig C, Gaynor JW, Mahle WT, Miller T, Mussatto KA, Sananes R, Uzark K, Trachtenberg F, Pizarro C, Pemberton VL, Lewis AB, Li JS, Jacobs JP, Cnota J, Atz AM, Lai WW, Bellinger D, Newburger JW, PHN INVESTIGATORS. Behavior and Quality of Life at 6 Years for Children With Hypoplastic Left Heart Syndrome. Pediatrics. 2019 Nov;144(5).

Published In

Pediatrics

DOI

EISSN

1098-4275

Publication Date

November 2019

Volume

144

Issue

5

Location

United States

Related Subject Headings

  • Surveys and Questionnaires
  • Quality of Life
  • Prospective Studies
  • Pediatrics
  • Male
  • Hypoplastic Left Heart Syndrome
  • Humans
  • Female
  • Child Behavior Disorders
  • Child Behavior