肺动脉高压(PAH)的死亡率仍然很高,建议在适当时转诊姑息或支持治疗(P/SC)专科服务。然而,对于诊断为非癌症的患者来说,获得P/SC通常是一个挑战,很少有PAH患者报告P/SC参与其治疗.由多学科小组(N=15)完成的三份问卷的改良Delphi过程用于制定有关使用P/SC支持PAH患者的专家共识声明。小组成员在李克特量表上对每个陈述的协议进行了评级。强烈的共识是,当疾病症状变得难以控制或临终关怀时,患者应转诊至P/SC。达成共识的服务是疼痛管理技术,临终关怀,和社会心理建议。姑息或支持治疗应与患者讨论,最好是当面,当疾病症状变得难以控制时,开始治疗时,当治疗相关不良事件发生或对初始干预无效时。护理伙伴和患者支持小组被认为对改善患者的整体健康结果很重要,治疗依从性,和对护理的感知。大多数PAH患者经历认知和/或心理社会变化,接受心理社会管理的患者对治疗的持久性和/或依从性更好。这些共识声明为医疗保健提供者提供了关于转诊姑息治疗服务的“谁和何时”的指导,以及关注患者护理和生活质量的社会心理方面的重要性。
Mortality in pulmonary arterial hypertension (PAH) remains high and referral to palliative or supportive care (P/SC) specialist services is recommended when appropriate. However, access to P/SC is frequently a challenge for patients with a noncancer diagnosis and few patients living with PAH report P/SC involvement in their care. A modified Delphi process of three questionnaires completed by a multidisciplinary panel (N = 15) was used to develop expert
consensus statements regarding the use of P/SC to support patients with PAH. Panelists rated their agreement with each statement on a Likert scale. There was a strong
consensus that patients should be referred to P/SC when disease symptoms become unmanageable or for end-of-life care. Services that achieved
consensus were pain management techniques, end-of-life care, and psychosocial recommendations. Palliative or supportive care should be discussed with patients, preferably in-person, when disease symptoms become unmanageable, when starting treatment, when treatment-related adverse events occur or become refractory to initial intervention. Care partners and patient support groups were considered important in improving a patient\'s overall health outcomes, treatment adherence, and perception of care. Most patients with PAH experience cognitive and/or psychosocial changes and those who receive psychosocial management have better persistence and/or compliance with their treatment. These
consensus statements provide guidance to healthcare providers on the \"who and when\" of referral to palliative care services, as well as the importance of focusing on the psychosocial aspects of patient care and quality of life.