Pediatric Cardiology

, Volume 35, Issue 3, pp 536–541

Health-Related Quality of Life Experienced by Children With Chromosomal Abnormalities and Congenital Heart Defects

  • Gonzalo Garcia Guerra
  • Ari R. Joffe
  • Charlene M. T. Robertson
  • Joseph Atallah
  • Gwen Alton
  • Reg S. Sauve
  • Irina A. Dinu
  • David B. Ross
  • Ivan M. Rebeyka
  • Western Canadian Complex Pediatric Therapies Follow-up Group
Original Article

DOI: 10.1007/s00246-013-0820-3

Cite this article as:
Garcia Guerra, G., Joffe, A.R., Robertson, C.M.T. et al. Pediatr Cardiol (2014) 35: 536. doi:10.1007/s00246-013-0820-3

Abstract

Long-term outcomes are fundamental in advising parents about the potential future of their children with congenital heart disease (CHD). No published reports have described the health-related quality of life (HRQL) experienced by children with chromosomal abnormalities who had surgery in early infancy for CHD. A study was undertaken to assess HRQL among children with chromosomal abnormalities and CHD. The authors hypothesized that these children have a worse HRQL than healthy children or a cohort of children matched for CHD diagnosis. Infants with chromosomal abnormalities undergoing cardiac surgery for CHD at 6 weeks of age or younger at the Stollery Children’s Hospital between July 2000 and June 2005 were included in the study. The HRQL of these infants was assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales completed by their parents at a 4-year follow-up evaluation. The study compared the scores for 16 children with normative data. The children with chromosomal abnormalities and CHD had significantly lower mean total PedsQL (71.3 vs. 87.3; p < 0.0001), Psychosocial Summary (70.3 vs. 86.1; p < 0.0001), and Physical Summary (74.3 vs. 89.2; p = 0.0006) scores. Compared with the matched children, those with chromosomal abnormalities had a significantly lower median total PedsQL (75.0 vs. 84.6; p = 0.03), Physical Summary (79.5 vs. 96.9; p = 0.007), and School Functioning (68.5 vs. 83.0; p = 0.03) scores. A better understanding of the mechanisms and determinants of HRQL in these children has the potential to yield important implications for clinical practice including clarity for treatment decision making as well as determination of targeted supports and services to meet the needs of these children and their families differentially.

Keywords

Congenital heart disease Chromosomal abnormalities Pediatric cardiac surgery Health-related quality of life 

Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Gonzalo Garcia Guerra
    • 1
  • Ari R. Joffe
    • 1
  • Charlene M. T. Robertson
    • 1
    • 2
  • Joseph Atallah
    • 1
  • Gwen Alton
    • 1
    • 2
  • Reg S. Sauve
    • 3
  • Irina A. Dinu
    • 4
  • David B. Ross
    • 5
  • Ivan M. Rebeyka
    • 1
    • 5
  • Western Canadian Complex Pediatric Therapies Follow-up Group
  1. 1.Department of PediatricsUniversity of Alberta, 3A3.07 Stollery Children’s HospitalEdmontonCanada
  2. 2.Pediatric Rehabilitation Outcomes Evaluation and Research UnitGlenrose Rehabilitation HospitalEdmontonCanada
  3. 3.Department of Community Health SciencesUniversity of CalgaryCalgaryCanada
  4. 4.School of Public HealthUniversity of AlbertaEdmontonCanada
  5. 5.Department of SurgeryUniversity of AlbertaEdmontonCanada

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