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Published on: November 28, 2018
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.
Abstract:
Trisomy 18 is an autosomal trisomy condition characterized by minor to major birth defects, severe disabilities, and high rates of pre- and postnatal mortality. Interventions for these infants have traditionally been withheld with focus instead on palliative support. The issues and attitudes surrounding corrective surgery of congenital heart defects, which is a birth defect that occurs in approximately 90% of infants with trisomy 18, is of our study's interest as recent literature has indicated that cardiac surgery is being performed and may lead to improved survival compared to palliative care. Thus, our study aimed to describe clinician attitudes toward cardiac surgery and trisomy 18. We surveyed 378 clinicians from multiple specialties, including genetic counselors, involved in the pre- and postnatal care of infants with trisomy 18. Descriptive statistics were performed to describe all clinicians' responses, and a secondary analysis with stratifications by clinician type was also performed. Forty-eight percent (n = 378) of clinicians felt it was appropriate to discuss the option of cardiac surgery. Ethical concerns and insufficient outcome data were the most agreed upon reasons for not offering cardiac surgery. Trisomy 18 not being uniformly lethal and expressed parental wishes were the most agreed upon justifications for offering surgery. Clinicians felt the discussion of the option of cardiac surgery is appropriate, however are hesitant due to ethical concerns and insufficient outcome data. Results from this study aim to promote discussion and collaboration among clinicians to improve consistency in patient care.
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