Division of Geriatrics, University of California, San Francisco, USA.
Philip R. University of California, San Francisco, USA.
Prion. 2022 Dec;16(1):23-39. doi: 10.1080/19336896.2022.2043077.
We aimed to identify targets for neuropalliative care interventions in sporadic Creutzfeldt-Jakob disease by examining characteristics of patients and sources of distress and support among former caregivers. We identified caregivers of decedents with sporadic Creutzfeldt-Jakob disease from the University of California San Francisco Rapidly Progressive Dementia research database. We purposively recruited 12 caregivers for in-depth interviews and extracted associated patient data. We analysed interviews using the constant comparison method and chart data using descriptive statistics. Patients had a median age of 70 (range: 60-86) years and disease duration of 14.5 months (range 4-41 months). Caregivers were interviewed a median of 22 (range 11-39) months after patient death and had a median age of 59 (range 45-73) years. Three major sources of distress included (1) the unique nature of sporadic Creutzfeldt-Jakob disease; (2) clinical care issues such as difficult diagnostic process, lack of expertise in sporadic Creutzfeldt-Jakob disease, gaps in clinical systems, and difficulties with end-of-life care; and (3) caregiving issues, including escalating responsibilities, intensifying stress, declining caregiver well-being, and care needs surpassing resources. Two sources of support were (1) clinical care, including guidance from providers about what to expect and supportive relationships; and (2) caregiving supports, including connection to persons with experience managing Creutzfeldt-Jakob disease, instrumental support, and social/emotional support. The challenges and supports described by caregivers align with neuropalliative approaches and can be used to develop interventions to address needs of persons with sporadic Creutzfeldt-Jakob disease and their caregivers.
我们旨在通过考察散发性克雅氏病患者的特征以及前照护者的痛苦和支持来源，确定神经姑息治疗干预的目标。我们从加利福尼亚大学旧金山分校快速进展性痴呆症研究数据库中确定了散发性克雅氏病死者的照护者。我们有目的地招募了 12 名照顾者进行深入访谈，并提取了相关的患者数据。我们使用恒比法分析访谈，使用描述性统计分析图表数据。患者的中位年龄为 70 岁（范围：60-86 岁），疾病持续时间为 14.5 个月（范围 4-41 个月）。照顾者在患者去世后中位时间为 22 个月（范围 11-39 个月）接受访谈，中位年龄为 59 岁（范围 45-73 岁）。痛苦的三个主要来源包括：（1）散发性克雅氏病的独特性质；（2）临床护理问题，如诊断过程困难、缺乏散发性克雅氏病专业知识、临床系统存在差距以及临终关怀困难；（3）照护问题，包括责任加重、压力加剧、照顾者健康状况恶化以及照护需求超过资源。两个支持来源是：（1）临床护理，包括提供者提供的有关预期的指导和支持性关系；（2）照护支持，包括与管理克雅氏病经验丰富的人建立联系、提供物质支持和社会/情感支持。照顾者描述的挑战和支持与神经姑息治疗方法一致，可以用来开发干预措施，以满足散发性克雅氏病患者及其照护者的需求。
