Division of Palliative Medicine, QEII Health Science Centre and Dalhousie University, Halifax, Nova Scotia, Canada.
J Palliat Med. 2013 Jan;16(1):67-73. doi: 10.1089/jpm.2012.0285.
Patients and caregivers living with advanced chronic obstructive pulmonary disease (COPD) have complex care needs and may benefit from palliative care intervention. Little is known about how best to implement and evaluate such initiatives.
To determine the feasibility of: 1) implementing a customized home-based palliative care service for patients and caregivers living with advanced COPD and 2) measuring outcomes of providing such services.
Single-centre cohort longitudinal observational study.
SETTING/SUBJECTS: Patients with advanced COPD and their caregivers were followed in their homes for 6 months.
Health-related quality of life (HRQoL), caregiver burden, symptom severity, patient/caregiver satisfaction, utilization of acute care services, end-of-life (EOL) outcomes.
30 patients and 18 caregivers were enrolled over 33 months. 25 patients (83%) and 14 caregivers (77%) reached our study endpoint. 13 patients (52%) and 5 caregivers (36%) completed outcome measurements at baseline and endpoint. HRQoL, caregiver burden and symptom severity did not change. Palliative care services were welcomed and valued, yet, despite a stated preference to die at home, 16 patients who died within 18 months of study enrollment died in hospital.
Providing home-based palliative care services for patients with advanced COPD is feasible but completing repeated questionnaires is impractical. Despite significant palliative supports, managing terminal symptoms exceeded caregivers' capacity to cope and forced hospital admission. Insights into systemic barriers and limitations of current palliative care service models can provide opportunities for local program innovation aimed at improving care for advanced COPD.
患有晚期慢性阻塞性肺疾病（COPD）的患者和护理人员有复杂的护理需求，可能受益于姑息治疗干预。目前对于如何最好地实施和评估此类举措知之甚少。
确定以下两个方面的可行性：1）为患有晚期 COPD 的患者及其护理人员实施定制的家庭姑息治疗服务，以及 2）测量提供此类服务的结果。
单中心队列纵向观察性研究。
设置/受试者：对患有晚期 COPD 的患者及其护理人员进行了为期 6 个月的家庭随访。
健康相关生活质量（HRQoL）、护理人员负担、症状严重程度、患者/护理人员满意度、急性护理服务的利用情况、临终（EOL）结局。
在 33 个月内纳入了 30 名患者和 18 名护理人员。25 名患者（83%）和 14 名护理人员（77%）达到了我们的研究终点。13 名患者（52%）和 5 名护理人员（36%）在基线和终点完成了结果测量。HRQoL、护理人员负担和症状严重程度没有变化。姑息治疗服务受到欢迎和重视，但尽管有在家中去世的明确意愿，16 名在研究入组后 18 个月内死亡的患者仍在医院去世。
为患有晚期 COPD 的患者提供家庭姑息治疗服务是可行的，但重复填写问卷是不切实际的。尽管姑息治疗支持力度很大，但管理终末期症状超出了护理人员的应对能力，导致他们被迫住院。深入了解姑息治疗服务模式中的系统障碍和局限性，可以为旨在改善晚期 COPD 护理的本地项目创新提供机会。
