Cousino Melissa K, Schumacher Kurt R, Magee John C, Wolfe Joanne, Yu Sunkyung, Eder Sally J, Fredericks Emily M
Department of Pediatrics, Michigan Medicine, Ann Arbor, Michigan.
University of Michigan Transplant Center, Ann Arbor, Michigan.
Pediatr Transplant. 2019 May;23(3):e13373. doi: 10.1111/petr.13373. Epub 2019 Feb 7.
Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of this growing population of young people. This study characterized current practices, beliefs, and challenges specific to the disclosure of prognosis and end-of-life care topics among providers caring for pediatric organ failure and transplant populations.
This cross-sectional study included 144 healthcare providers actively caring for children, adolescents, and young adults with organ failure or solid organ transplant history. Participants completed an electronic survey measuring frequency and comfort in discussing the following topics with patients and parents: prognosis/survival statistics, re-transplantation, advance care planning (ACP), and death/dying. Descriptive statistics, two-sample t tests, and analysis of variance were used.
Fewer than half of respondents regularly discuss prognosis/survival statistics and potential need for re-transplantation with their pediatric and young adult patients. Less than 20% of providers engage their pediatric patients in ACP discussions, and approximately 30% facilitate such discussions with young adult patients. Pediatric organ failure and transplant providers endorse a number of barriers specific to discussing these topics.
Pediatric organ failure and transplant providers do not regularly discuss prognosis or end-of-life care topics with this patient population. Communication-focused intervention research is needed to improve honest and compassionate discussion of these topics that is aligned with both patients' and parents' needs and preferences.
尽管在治疗和生存方面取得了进展，但小儿器官衰竭和移植人群仍然面临着显著的发病和死亡风险。对于满足这一不断增长的年轻人群的临终关怀需求，科学界关注甚少。本研究描述了在照顾小儿器官衰竭和移植人群的医疗服务提供者中，关于预后披露和临终关怀主题的当前做法、信念及挑战。
这项横断面研究纳入了144名积极照顾患有器官衰竭或有实体器官移植史的儿童、青少年和青年的医疗服务提供者。参与者完成了一项电子调查，测量与患者及其父母讨论以下主题的频率和舒适度：预后/生存统计、再次移植、预先护理计划（ACP）以及死亡/临终。使用了描述性统计、双样本t检验和方差分析。
不到一半的受访者会定期与他们的儿科和青年患者讨论预后/生存统计以及再次移植的潜在需求。不到20%的医疗服务提供者会与儿科患者进行ACP讨论，约30%的人会促进与青年患者的此类讨论。小儿器官衰竭和移植医疗服务提供者认可在讨论这些主题时存在一些特定障碍。
小儿器官衰竭和移植医疗服务提供者不会定期与该患者群体讨论预后或临终关怀主题。需要开展以沟通为重点的干预研究，以改善对这些主题的坦诚且富有同情心的讨论，使其符合患者及其父母的需求和偏好。
