Health-Related Quality of Life After Neonatal Treatment of Symptomatic Tetralogy of Fallot: Insights from the Congenital Cardiac Research Collaborative

To evaluate the association between initial management strategy of neonatal symptomatic Tetralogy of Fallot (sTOF) and later health-related quality of life (HRQOL) outcomes. We performed a multicenter, cross-sectional evaluation of a previously assembled cohort of infants with sTOF who underwent initial intervention at ≤ 30 days of age, between 2005 and 2017. Eligible patients' parents/guardians completed an age-appropriate Pediatric Quality of Life Inventory, a Pediatric Quality of Life Inventory Cardiac Module Heart Disease Symptoms Scale, and a parental survey. The association between treatment strategy and HRQOL was evaluated, and the entire sTOF cohort was compared to published values for the healthy pediatric population and to children with complex congenital heart disease and other chronic illness. The study cohort included 143 sTOF subjects, of which 59 underwent a primary repair, and 84 had a staged repair approach. There was no association between initial management strategy and lower HRQOL. For the entire cohort, in general, individual domain scores decreased as age sequentially increased. Across domain measurements, mean scores for the sTOF cohort were significantly lower than the healthy pediatric population and comparable to those with other forms of complex CHD and other chronic health conditions. The presence of a genetic syndrome was significantly associated with a poor HRQOL (p = 0.003). Initial treatment strategy for sTOF was not associated with differences in late HRQOL outcomes, though the overall HRQOL in this sTOF cohort was significantly lower than the general population, and comparable to others with chronic illness.

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Publication Details

Journal
Pediatric Cardiology
Published
2024-09-21
DOI
https://doi.org/10.1007/s00246-024-03650-2
Citations
3
Primary Topic
Congenital Heart Disease Studies
Type
article
Field-Weighted Citation Impact
1.16
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article

Health-Related Quality of Life After Neonatal Treatment of Symptomatic Tetralogy of Fallot: Insights from the Congenital Cardiac Research Collaborative

Asaad G. Beshish, Courtney McCracken, Mark A. Law, R. Allen Ligon et al.
3 citations
Pediatric Cardiology
Congenital Heart Disease Studies
1.16
article

Health-Related Quality of Life After Neonatal Treatment of Symptomatic Tetralogy of Fallot: Insights from the Congenital Cardiac Research Collaborative

Asaad G. Beshish, Courtney McCracken, Mark A. Law, R. Allen Ligon, Shabana Shahanavaz, Hala Q Khan, Michael L. O’Byrne, Andrew C. Glatz, Sarosh Percy Batlivala, Shalin Parekh, Bryan H. Goldstein, Dawn Ilardi, Caren S. Goldberg, Jeffrey D. Zampi, Jeffery Meadows, Shiraz A. Maskatia, George T. Nicholson, Kathryn O. Stack, Christopher J. Petit, Athar M. Qureshi, Yun Liang Zhang, Jennifer C. Romano
article en
3 citations

Abstract

To evaluate the association between initial management strategy of neonatal symptomatic Tetralogy of Fallot (sTOF) and later health-related quality of life (HRQOL) outcomes. We performed a multicenter, cross-sectional evaluation of a previously assembled cohort of infants with sTOF who underwent initial intervention at ≤ 30 days of age, between 2005 and 2017. Eligible patients' parents/guardians completed an age-appropriate Pediatric Quality of Life Inventory, a Pediatric Quality of Life Inventory Cardiac Module Heart Disease Symptoms Scale, and a parental survey. The association between treatment strategy and HRQOL was evaluated, and the entire sTOF cohort was compared to published values for the healthy pediatric population and to children with complex congenital heart disease and other chronic illness. The study cohort included 143 sTOF subjects, of which 59 underwent a primary repair, and 84 had a staged repair approach. There was no association between initial management strategy and lower HRQOL. For the entire cohort, in general, individual domain scores decreased as age sequentially increased. Across domain measurements, mean scores for the sTOF cohort were significantly lower than the healthy pediatric population and comparable to those with other forms of complex CHD and other chronic health conditions. The presence of a genetic syndrome was significantly associated with a poor HRQOL (p = 0.003). Initial treatment strategy for sTOF was not associated with differences in late HRQOL outcomes, though the overall HRQOL in this sTOF cohort was significantly lower than the general population, and comparable to others with chronic illness.

Pediatric CardiologyVol. 46(8)
Cincinnati Children's Hospital Medical Center (US), Morgan Stanley Children's Hospital (US), Children's Hospital of Philadelphia (US), Kaiser Permanente (US), Emory University (US), University of Pittsburgh (US), University of Alabama (US), University of California, San Francisco (US), Baylor College of Medicine (US), Vanderbilt University (US), Washington University in St. Louis (US), University of Michigan (US), Children's of Alabama (US), Connecticut Children's Medical Center (US), NeuroDevelopment Center (US), Children's Hospital of Pittsburgh (US), Children's Healthcare of Atlanta (US), Texas Children's Hospital (US), C. S. Mott Children's Hospital (US), University of Cincinnati (US), Columbia University (US), Vanderbilt University Medical Center (US), Stanford University (US)
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Congenital Heart Disease Studies
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