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Related Experiment Video

Updated: Jun 13, 2025

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Hypoplastic Left Heart Syndrome Practice Variation Across 31 Centres From 20 European Countries. An AEPC Imaging

Massimiliano Cantinotti1, Inga Voges2, Giovanni di Salvo3

  • 1Fondazione CNR-Regione Toscana G. Monasterio (FTGM), National Research Institute (CNR), Pisa, Italy.

European Journal of Pediatrics
|May 31, 2025
PubMed
Summary

Management of hypoplastic left heart syndrome (HLHS) varies significantly across European centers. This study reveals wide disparities in pre-operative assessment, surgical strategies, and follow-up care for single ventricle palliation.

Keywords:
Congenital heart diseaseHypoplastic left heart syndromeImagingManagementPracticeVariation

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Area of Science:

  • Pediatric Cardiology
  • Congenital Heart Disease Management

Background:

  • Hypoplastic left heart syndrome (HLHS) is a complex congenital cardiac defect requiring specialized management.
  • Existing knowledge and guidelines have not led to standardized treatment approaches for HLHS across Europe.

Purpose of the Study:

  • To evaluate current practices in the pre-operative assessment, surgical management, and follow-up of children with HLHS across European centers.
  • To identify variations in medical treatment regimens and diagnostic evaluations for HLHS patients.

Main Methods:

  • A structured questionnaire was distributed to 31 centers affiliated with the European Association of Paediatric & Congenital Cardiology (AEPC) across 20 countries.
  • Data collected included details on delivery planning, initial palliation strategies, timing of surgical stages, diagnostic imaging, medication use, and follow-up protocols.

Main Results:

  • Significant variability was observed in all aspects of HLHS management, including delivery planning, initial palliation choices (RV-PA conduit, mBTTS, hybrid), and timing of surgical stages.
  • Pre-operative investigations showed wide disparities, with only 65% performing cardiac catheterization and 19% using cardiac magnetic resonance. Follow-up protocols were employed by only 60% of centers.
  • There was considerable variation in the use of fenestration, anticoagulation, antiplatelet therapy, and heart failure medications.

Conclusions:

  • This survey highlights substantial practice variations in the management of hypoplastic left heart syndrome (HLHS) throughout single ventricle palliation stages.
  • Major discrepancies exist in pre- and post-surgical investigations, surgical strategies for Stage I and III palliation, medical treatment, and follow-up programs.
  • Standardization of diagnostic evaluations, medical treatments, and surveillance may improve outcomes for HLHS patients.