Higgins S S, Paul S M, Hardy C E, Ternullo-Retta C, Affonso D
Division of Pediatric Cardiology, Children's Hospital, Oakland, CA 94609.
J Heart Lung Transplant. 1994 Jan-Feb;13(1 Pt 1):59-65.
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.
婴儿心脏移植已成为小儿心脏移植领域中发展最快的领域。对于父母而言，婴儿心脏移植带来了极为复杂的决策情况。医生的观念与他们向父母介绍心脏移植选项的方式之间存在关联。本研究的目的是：（1）确定医生对新生儿心脏移植的看法；（2）明确他们对自己在为父母提供心脏移植咨询方面所扮演角色的认知；（3）评估不同医生专业（儿科心脏病专家、新生儿科医生和儿科医生）以及不同执业环境（大学、私立机构、健康维护组织）下观念的差异。设计了一份问卷来调查117名医生对心脏移植的看法。研究结果显示，在观念方面存在显著差异：（1）婴儿心脏移植仍处于试验阶段（儿科心脏病专家，56%；新生儿科医生，85%；儿科医生，63%；p<0.05）；（2）对于致命性心脏病，新生儿心脏移植是可接受的（儿科心脏病专家，86%；新生儿科医生，73%；儿科医生，63%；p<0.05）；（3）新生儿心脏移植应以消极方式呈现，以保护父母免受其生活质量可能受到的负面影响（儿科心脏病专家，14%；新生儿科医生，33%；儿科医生，48%；p<0.05）；（大学，25%；私立机构，18%；健康维护组织，61%；p<0.05）；以及（4）患有左心发育不全综合征的婴儿不应接受治疗（大学，28%；私立机构，23%；健康维护组织，55%；p<0.05）。尽管向父母公正地介绍婴儿心脏移植的信息至关重要，但我们得出结论，许多接受调查的医生对婴儿心脏移植的当前技术水平存在知识欠缺或偏见。
