Afonso Natasha S, Ninemire Margaret R, Gowda Sharada H, Jump Jaime L, Lantin-Hermoso Regina L, Johnson Karen E, Puri Kriti, Hope Kyle D, Kritz Erin, Achuff Barbara-Jo, Gurganious Lindsey, Bhat Priya N
Sections of Critical Care Medicine and Cardiology, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, TX 77030, USA.
Section of Neonatology, Department of Pediatrics, Texas Children's Hospital and Baylor College of Medicine, Houston, TX 77030, USA.
Children (Basel). 2021 Jun 25;8(7):548. doi: 10.3390/children8070548.
Patients with perinatal and neonatal congenital heart disease (CHD) represent a unique population with higher morbidity and mortality compared to other neonatal patient groups. Despite an overall improvement in long-term survival, they often require chronic care of complex medical illnesses after hospital discharge, placing a high burden of responsibility on their families. Emerging literature reflects high levels of depression and anxiety which plague parents, starting as early as the time of prenatal diagnosis. In the current era of the global COVID-19 pandemic, the additive nature of significant stressors for both medical providers and families can have catastrophic consequences on communication and coping. Due to the high prognostic uncertainty of CHD, data suggests that early pediatric palliative care (PC) consultation may improve shared decision-making, communication, and coping, while minimizing unnecessary medical interventions. However, barriers to pediatric PC persist largely due to the perception that PC consultation is indicative of "giving up." This review serves to highlight the evolving landscape of perinatal and neonatal CHD and the need for earlier and longitudinal integration of pediatric PC in order to provide high-quality, interdisciplinary care to patients and families.
与其他新生儿患者群体相比,患有围产期和新生儿先天性心脏病(CHD)的患者是一个独特的群体,其发病率和死亡率更高。尽管长期生存率总体有所提高,但他们出院后往往需要对复杂的内科疾病进行长期护理,给其家庭带来了沉重的责任负担。新出现的文献表明,早在产前诊断时起,困扰父母的抑郁和焦虑情绪就很严重。在当前全球新冠疫情的时代,医疗服务提供者和家庭面临的重大压力源具有叠加性,可能会对沟通和应对产生灾难性后果。由于先天性心脏病的预后不确定性很高,数据表明,早期儿科姑息治疗(PC)咨询可能会改善共同决策、沟通和应对,同时尽量减少不必要的医疗干预。然而,儿科姑息治疗的障碍在很大程度上仍然存在,因为人们认为姑息治疗咨询意味着“放弃”。这篇综述旨在强调围产期和新生儿先天性心脏病不断变化的情况,以及儿科姑息治疗早期和长期整合的必要性,以便为患者及其家庭提供高质量的跨学科护理。