Department of Statistics and Data Sciences, (L.P.) University of Texas, Austin, Texas, USA; RAND Corporation, Santa Monica, (M.E.) California, USA.
RAND Corporation, Pittsburgh, (A.H.) Pennsylvania, USA.
J Pain Symptom Manage. 2022 Jul;64(1):70-79. doi: 10.1016/j.jpainsymman.2022.02.342. Epub 2022 Mar 6.
Little is known about the hospice care experiences of those with Huntington's Disease (HD).
Our objective is to provide the first national characterization of hospice care quality for patients with HD and their families.
We used national Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey data to examine caregiver-reported experiences of hospice care. We analyzed data from 550 caregivers of patients with HD and 1,098,819 caregivers of patients without HD who died January 2016-June 2019 while receiving hospice care from 3,845 hospices nationwide. Outcomes (on a 0-100 scale) were eight publicly-reported quality of care measures, and four individual survey items about receiving help for specific symptoms. Analyses were propensity-score weighted and adjusted for patient and caregiver characteristics.
Experiences of care among patients with HD were similar to or better than for patients without HD. Across all hospice and care settings, the only significant difference was for Providing Emotional, and Spiritual Support (90.9 [HD] vs. 88.2 [non-HD], a medium effect size, P < 0.01). However, patients with HD more often received care in settings with worse experiences for all patients; within the same hospice and same setting of care, measure scores were significantly higher for patients with HD compared to those without HD (2.3-4.6 points higher on a 0-100 scale) for all measures except Getting Hospice Care Training.
Our findings highlight the benefits of hospice care for those with HD and their families and may be useful for patients with HD when making decisions regarding options for end-of-life care.
关于亨廷顿病（HD）患者的临终关怀体验，人们知之甚少。
我们的目的是首次对接受临终关怀的 HD 患者及其家属的临终关怀质量进行全国性描述。
我们使用全国消费者评估医疗保健提供者和系统（CAHPS）临终关怀调查数据来评估护理人员报告的临终关怀体验。我们分析了 2016 年 1 月至 2019 年 6 月期间在全国范围内 3845 家临终关怀机构接受临终关怀的 550 名 HD 患者的护理人员和 1098819 名非 HD 患者的护理人员的数据。结果（0-100 分制）是八项公开报告的护理质量措施和四项关于特定症状的个别调查项目。分析采用倾向评分加权，并根据患者和护理人员的特征进行调整。
HD 患者的护理体验与非 HD 患者相似或更好。在所有临终关怀和护理环境中，唯一显著的差异是提供情感和精神支持（90.9[HD]与 88.2[非 HD]，中等效应量，P<0.01）。然而，HD 患者更经常在所有患者体验较差的环境中接受护理；在同一临终关怀机构和相同的护理环境中，除了接受临终关怀培训外，HD 患者的测量得分明显高于非 HD 患者（0-100 分制的 2.3-4.6 分）。
我们的研究结果突出了临终关怀对 HD 患者及其家属的益处，并且在 HD 患者做出有关生命末期护理选择的决策时可能对其有用。
