DeRose Lesje, Godfrey Sarah, Peyvandi Shabnam, Cresalia Nicole M, Steiner Jill M, Morell Emily
University of California San Francisco Benioff Children's Hospitals, San Francisco, CA, USA.
University of Texas Southwestern Medical Center, Dallas, TX, USA.
Pediatr Cardiol. 2025 Jun 22. doi: 10.1007/s00246-025-03926-1.
With advances in treatment options for severe congenital heart disease, there is a growing population of children and adults living with advanced heart disease, many of whom experience significant long-term comorbidities and uncertain disease trajectories. Although palliative care (PC) plays an integral role in the care of children with advanced heart disease, there is a lack of PC education in pediatric cardiology fellowship training. We distributed a cross-sectional survey to pediatric cardiology fellowship program directors (PDs) nationally (n = 58). Survey response rate was 48.3% (28/58). PDs reported PC didactic education in 71.4% (20/28) of programs, with 95% (19/20) reporting this education came from PC specialists, 35% (7/20) from pediatric cardiologists, 25% (5/20) from cardiac intensivists, and 10% (2/20) from general pediatric intensivists. Simulation was used by 10.7% (3/28) of programs. Only one program utilized online modules. Informal bedside teaching occurred in 92.9% (26/28) of programs, and dedicated PC rotations in 25% (7/28). Most programs endorsed annual formal didactics on various PC topics, although some topics were covered more frequently and some never covered by individual programs. Only 53.8% (14/26) of PDs were satisfied with the amount of PC education while 76.9% (20/26) were satisfied with the quality of PC education. Barriers included "too much other content to cover" (77%) and "lack of faculty expertise" (27%). A subset of PDs rated graduating fellows' skills as less than competent in advance care planning (38.5%), criticall illness communication (15.4%), and complex symptom management (15.4%). With a wide range of PC education practices and high rate of PD dissatisfaction with PC education in their programs, there is a need for standardized PC training recommendations and curriculum.
随着重症先天性心脏病治疗方案的进步,患有晚期心脏病的儿童和成人数量不断增加,其中许多人经历着严重的长期合并症且疾病发展轨迹不明。尽管姑息治疗(PC)在晚期心脏病患儿的护理中发挥着不可或缺的作用,但儿科心脏病学 fellowship 培训中缺乏姑息治疗教育。我们向全国的儿科心脏病学 fellowship 项目主任(PDs)发放了一份横断面调查问卷(n = 58)。调查回复率为48.3%(28/58)。项目主任报告称,71.4%(20/28)的项目有姑息治疗的理论教育,其中95%(19/20)报告称这种教育来自姑息治疗专家,35%(7/20)来自儿科心脏病学家,25%(5/20)来自心脏重症监护医生,10%(2/20)来自普通儿科重症监护医生。10.7%(3/28)的项目使用了模拟教学。只有一个项目使用了在线模块。92.9%(26/28)的项目有非正式的床边教学,25%(7/28)的项目有专门的姑息治疗轮转。大多数项目认可就各种姑息治疗主题进行年度正式教学,不过有些主题某些项目更频繁涉及,有些主题则从未涉及。只有53.8%(14/26)的项目主任对姑息治疗教育的量感到满意,而76.9%(20/26)对姑息治疗教育的质量感到满意。障碍包括“要涵盖的其他内容太多”(77%)和“缺乏教员专业知识”(27%)。一部分项目主任认为毕业学员在预先护理计划(38.5%)、危重病沟通(15.4%)和复杂症状管理(15.4%)方面的技能不足。鉴于姑息治疗教育实践范围广泛且项目主任对其项目中的姑息治疗教育不满率较高,需要有标准化的姑息治疗培训建议和课程。