Steiner Jill M, Stout Karen, Soine Laurie, Kirkpatrick James N, Curtis J Randall
Division of Cardiology, School of Medicine, University of Washington, Seattle, Washington.
Cambia Palliative Care Center of Excellence, University of Washington, Seattle, Washington.
Congenit Heart Dis. 2019 May;14(3):403-409. doi: 10.1111/chd.12735. Epub 2018 Dec 21.
Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined.
We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions.
The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions.
Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.
患有成人先天性心脏病（ACHD）的患者报告称，预先护理计划（ACP）很重要，且他们希望了解预后信息。然而，认识到其重要性和愿意参与是不同的概念，以及如何及何时开始进行ACP和姑息治疗讨论仍不明确。
我们对150名连续门诊患者进行了横断面调查，以评估其参与ACP的意愿、希望与谁进行讨论以及这些讨论的重要障碍和促进因素。
大多数参与者（69%）报告愿意参与ACP；79%愿意参加会议讨论目标和护理偏好；91%愿意与专门从事姑息治疗的临床医生交谈。已婚和预期寿命较短与报告的参与ACP意愿增加有关。大多数参与者希望与之进行这些讨论的医疗服务提供者是他们的ACHD临床医生。参与者确定了这些讨论的重要障碍和促进因素。
患有ACHD的患者报告愿意参与ACP和姑息治疗讨论。患者更喜欢与他们的ACHD临床医生进行这些讨论，因此ACHD临床医生需要准备好将解决这些问题作为常规护理的一部分。
