1Division of Pulmonary, Allergy, and Critical Care Medicine.
2Health Services, Outcomes, and Effectiveness Research Training Program.
Ann Am Thorac Soc. 2019 Aug;16(8):1024-1033. doi: 10.1513/AnnalsATS.201902-112OC.
Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD). We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV]/FVC < 70% and FEV < 80%-predicted) and their family caregivers. Validated surveys on quality of life, anxiety and depressive symptoms, and social isolation quantified symptom severity. Semi-structured interviews were analyzed for major themes on early palliative care and needs in patients and family caregivers and across COPD severity stages. Patients ( = 10) were a mean (±SD) age of 60.4 (±7.5) years, 50% African American, and 70% male, with 30% having moderate COPD, 30% severe COPD, and 40% very severe COPD. Family caregivers ( = 10) were a mean age of 58.3 (±8.7) years, 40% African American, and 10% male. Overall, 30% ( = 6) of participants had poor quality of life, 45% ( = 9) had moderate-severe anxiety symptoms, 25% ( = 5) had moderate-severe depressive symptoms, and 40% ( = 8) reported social isolation. Only 30% had heard of palliative care, and most participants had misconceptions that palliative care was end-of-life care. All participants responded positively to a standardized description of early palliative care and were receptive to its integration as early as moderate stage. Five broad themes of early palliative care needs emerged: ) coping with COPD; ) emotional symptoms; ) respiratory symptoms; ) illness understanding; and ) prognostic awareness. Coping with COPD and emotional symptoms were commonly shared early palliative care needs. Patients with very severe COPD and their family caregivers prioritized illness understanding and prognostic awareness compared with those with moderate-severe COPD. Patients with moderate to very severe COPD and their family caregivers found early palliative care acceptable and felt it should be integrated before end-stage. Of the five broad themes of early palliative care needs, coping with COPD and emotional symptoms were the highest priority, followed by respiratory symptoms, illness understanding, and prognostic awareness.
关于如何将早期姑息治疗整合到慢性阻塞性肺疾病（COPD）中，目前几乎没有指导意见。我们试图确定处于 COPD 严重程度不同阶段的患者及其家属的早期姑息治疗需求。作为干预措施开发医学研究委员会框架发展阶段的一部分，我们对中重度至非常重度 COPD 患者（1 秒用力呼气量/用力肺活量 [FEV]/FVC<70%和 FEV<80%-预计值）及其家属进行了形成性评估。经过验证的生活质量、焦虑和抑郁症状以及社会隔离调查量表量化了症状的严重程度。对患者和家属以及 COPD 严重程度各个阶段的早期姑息治疗和需求的半结构化访谈进行了主要主题分析。患者（n=10）的平均年龄（±SD）为 60.4（±7.5）岁，50%为非裔美国人，70%为男性，30%为中度 COPD，30%为重度 COPD，40%为非常重度 COPD。家属（n=10）的平均年龄（±SD）为 58.3（±8.7）岁，40%为非裔美国人，10%为男性。总体而言，30%（n=6）的参与者生活质量差，45%（n=9）有中度至重度焦虑症状，25%（n=5）有中度至重度抑郁症状，40%（n=8）报告有社会隔离。只有 30%的人听说过姑息治疗，大多数参与者对姑息治疗是临终关怀的误解。所有参与者对标准化的早期姑息治疗描述都做出了积极的反应，并表示愿意在中度阶段尽早接受姑息治疗。早期姑息治疗需求出现了五个广泛的主题：）应对 COPD；）情绪症状；）呼吸症状；）疾病理解；和）预后意识。应对 COPD 和情绪症状是共同存在的早期姑息治疗需求。与中度至重度 COPD 患者及其家属相比，非常重度 COPD 患者及其家属更关注疾病理解和预后意识。中重度至非常重度 COPD 患者及其家属认为早期姑息治疗是可以接受的，并认为应该在终末期之前进行整合。在早期姑息治疗需求的五个广泛主题中，应对 COPD 和情绪症状是最高优先级，其次是呼吸症状、疾病理解和预后意识。
