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Infant heart transplantation: a survey of physician beliefs
S S Higgins1, S M Paul, C E Hardy
1Division of Pediatric Cardiology, Children's Hospital, Oakland, CA 94609.
Insights
Physician beliefs about infant heart transplantation vary significantly by specialty and practice setting. Many doctors show a knowledge deficit or bias regarding this rapidly growing area of pediatric care.
Area of Science:
- Pediatric Cardiology
- Neonatology
- Medical Ethics
Background:
- Infant heart transplantation is a rapidly expanding field within pediatric cardiac surgery.
- Parents face complex decisions regarding neonatal heart transplantation.
- Physician beliefs influence how heart transplantation options are presented to families.
Purpose of the Study:
- To ascertain physician beliefs regarding neonatal heart transplantation.
- To define physicians' perceived roles in counseling parents about infant heart transplantation.
- To evaluate belief differences across pediatric specialties and practice settings.
Main Methods:
- A questionnaire surveyed 117 physicians (pediatric cardiologists, neonatologists, pediatricians).
- Beliefs were assessed regarding the experimental nature, acceptability, and presentation of neonatal heart transplantation.
- Differences were analyzed based on physician specialty and practice setting (university, private, HMO).
Main Results:
- Significant differences emerged in physician beliefs about infant heart transplantation.
- A notable percentage of physicians viewed infant heart transplantation as experimental (56-85%).
- Acceptance for fatal heart disease varied (63-86%), as did the perceived need for negative presentation (14-48%) and treatment for hypoplastic left heart syndrome (23-55%).
Conclusions:
- Physician beliefs about infant heart transplantation are diverse and influenced by specialty and practice setting.
- A significant knowledge deficit or bias exists among surveyed physicians regarding the current state of infant heart transplantation.
- Ensuring accurate and unbiased information delivery to parents is crucial for informed decision-making.
Abstract:
Heart transplantation in infancy has become the fastest growing area in pediatric heart transplantation. Infant heart transplantation presents a profoundly complex decision-making situation for parents. There is a relationship between physician beliefs and their manner of presenting heart transplantation options to parents. The purpose of this study was (1) to determine the beliefs of physicians about neonatal heart transplantation, (2) to define their perceptions about their role in counseling parents about heart transplantation, and (3) to evaluate the differences of beliefs by physician specialties (pediatric cardiologists, neonatologists, and pediatricians) and practice settings (university, private, health maintenance organization). A questionnaire was designed to survey 117 physicians on their beliefs about heart transplantation. Findings revealed significant differences related to beliefs: (1) infant heart transplantation is still experimental (pediatric cardiologists, 56%; neonatologists, 85%; pediatricians, 63%; p < 0.05), (2) neonatal heart transplantation is acceptable for fatal heart disease (pediatric cardiologists, 86%; neonatologists, 73%; pediatricians, 63%; p < 0.05), (3) newborn heart transplantation should be presented negatively to protect parents from potential negative consequences on their quality of life (pediatric cardiologists, 14%; neonatologists, 33%; pediatricians, 48%; p < 0.05); (university, 25%; private, 18%; health maintenance organization, 61%; p < 0.05), and (4) infants with hypoplastic left heart syndrome should not be treated (university, 28%; private, 23%; health maintenance organization, 55%; p < 0.05). Though it is critical to impart information to parents with a fair representation of infant heart transplantation, we conclude that many physicians surveyed had a knowledge deficit or bias about the current state of the art of infant heart transplantation.