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Initial Counseling Prior to Palliation for Hypoplastic Left Heart Syndrome: 2021 vs 2011
Deipanjan Nandi1, Stacey Culp2, Andrew R Yates3
1Nationwide Children's Hospital, Ohio State University, Columbus, OH, USA. deipanjan.nandi@nationwidechildrens.org.
Pediatric Cardiology
|April 26, 2023
Summary
Initial counseling for hypoplastic left heart syndrome (HLHS) has shifted. The right ventricle to pulmonary artery conduit (RVPA) is now preferred for standard risk HLHS, while hybrid procedures are increasingly recommended for low birth-weight infants.
Area of Science:
- Pediatric Cardiology
- Congenital Heart Disease
- Surgical Practices
Background:
- Hypoplastic left heart syndrome (HLHS) requires complex initial management decisions.
- Counseling options for HLHS have evolved with advancements in treatment and outcomes.
- Understanding current practices in HLHS patient counseling is crucial for families and healthcare providers.
Purpose of the Study:
- To examine current practices and changes in initial counseling for families of HLHS patients.
- To compare 2021 counseling practices with those from 2011, reflecting treatment evolution.
- To identify preferred palliative strategies for HLHS based on patient risk and characteristics.
Main Methods:
- A questionnaire survey of pediatric care professionals in 2021, identical to one used in 2011.
- Data collected on preferred initial counseling strategies for HLHS, including Norwood with Blalock-Taussig-Thomas shunt (NW-BTT), NW with right ventricle to pulmonary artery conduit (NW-RVPA), hybrid palliation, heart transplantation, and non-intervention/hospice (NI).
- Analysis of 322 respondents in 2021 and 200 respondents in 2011, primarily cardiologists and cardiothoracic surgeons from North America.
Main Results:
- The NW-RVPA procedure was the preferred palliation for standard-risk HLHS patients in 2021 (61%), showing an increase from 2011 (52%).
- Non-intervention/hospice (NI) was offered by 71.4% of respondents for standard-risk patients and was the predominant strategy for patients with end-organ dysfunction, chromosomal abnormality, and prematurity.
- The hybrid procedure was increasingly recommended for low birth-weight infants in 2021 (51%) compared to 2011 (21%).
Conclusions:
- The NW-RVPA operation is the most recommended strategy in the US for infants with HLHS.
- The hybrid procedure is increasingly favored for low birth-weight infants.
- Non-intervention/hospice remains a considered option, even for standard-risk HLHS patients.
Keywords:
Hypoplastic left heart syndrome
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