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Attitudes of clinicians toward cardiac surgery and trisomy 18.
Kaulfus, Meagan E; Gardiner, Helena; Hashmi, S Shahrukh; Mendez-Figueroa, Hector; Miller, Victoria J; Stevens, Blair; Carter, Rebecca.
Affiliation
  • Kaulfus ME; Clinical 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.
  • Gardiner H; Department of Obstetrics, Gynecology and Reproductive Sciences, McGovern Medical School at Houston, Houston, Texas.
  • Hashmi SS; Department of Pediatrics, McGovern Medical School at Houston, Houston, Texas.
  • Mendez-Figueroa H; Obstetrics and Gynecology, Baylor College of Medicine, Houston, Texas.
  • Miller VJ; Trisomy 18 Foundation, Dale City, Virginia.
  • Stevens B; Department of Obstetrics, Gynecology and Reproductive Sciences, McGovern Medical School at Houston, Houston, Texas.
  • Carter R; Department of Obstetrics, Gynecology and Reproductive Sciences, McGovern Medical School at Houston, Houston, Texas.
J Genet Couns ; 28(3): 654-663, 2019 06.
Article in En | MEDLINE | ID: mdl-30688390
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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Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Attitude of Health Personnel / Trisomy 18 Syndrome / Heart Defects, Congenital / Cardiac Surgical Procedures Type of study: Qualitative_research Aspects: Ethics Limits: Adolescent / Adult / Female / Humans / Infant / Male / Middle aged / Newborn Language: En Journal: J Genet Couns Journal subject: GENETICA MEDICA Year: 2019 Document type: Article

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Attitude of Health Personnel / Trisomy 18 Syndrome / Heart Defects, Congenital / Cardiac Surgical Procedures Type of study: Qualitative_research Aspects: Ethics Limits: Adolescent / Adult / Female / Humans / Infant / Male / Middle aged / Newborn Language: En Journal: J Genet Couns Journal subject: GENETICA MEDICA Year: 2019 Document type: Article