Attitudes of clinicians toward cardiac surgery and trisomy 18

Meagan E Kaulfus1, Helena Gardiner2, S Shahrukh Hashmi3

  • 1Clinical Cancer Genetics Program, MD Anderson Cancer Center, University of Texas Genetic Counseling Training Program, The University of Texas MD Anderson Cancer Center UT Health Graduate School of Biomedical Sciences, Houston, Texas.

Insights

Clinicians find discussing cardiac surgery for Trisomy 18 infants appropriate but hesitate due to ethical concerns and limited outcome data. This study explores these attitudes to improve care consistency for infants with Trisomy 18.

Area of Science:

  • Genetics
  • Pediatric Cardiology
  • Bioethics

Background:

  • Trisomy 18 (Edwards syndrome) is a genetic disorder with severe birth defects and high mortality.
  • Congenital heart defects occur in ~90% of Trisomy 18 infants, traditionally managed with palliative care.
  • Emerging evidence suggests cardiac surgery may improve survival in Trisomy 18.

Purpose of the Study:

  • To investigate clinician attitudes towards offering corrective cardiac surgery for infants with Trisomy 18.
  • To identify factors influencing decisions for or against surgical intervention.

Main Methods:

  • A survey was distributed to 378 clinicians involved in Trisomy 18 care.
  • Descriptive statistics and stratified analyses by clinician type were performed.

Main Results:

  • 48% of clinicians deemed discussing cardiac surgery appropriate.
  • Ethical concerns and insufficient outcome data were primary barriers to offering surgery.
  • Non-uniform lethality and parental wishes were key justifications for offering surgery.

Conclusions:

  • Clinicians acknowledge the appropriateness of discussing cardiac surgery for Trisomy 18.
  • Hesitancy stems from ethical considerations and a lack of robust outcome data.
  • Further discussion and collaboration are needed to standardize care for these infants.

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