Indiana University School of Medicine, Indianapolis, IN, 46202, USA.
Regenstrief Institute, Inc, Indianapolis, IN, 46202, USA.
BMC Palliat Care. 2023 Jul 26;22(1):105. doi: 10.1186/s12904-023-01226-0.
Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes.
METHODS/DESIGN: The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer's Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki.
This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants.
The project is registered on ClinicalTrials.gov: NCT04520698.
姑息治疗是一种有效的护理模式，专注于最大限度地提高生活质量，并缓解包括痴呆症在内的重病患者的痛苦。有证据表明，许多在养老院接受护理的人都有资格并将从姑息治疗服务中受益。然而，姑息治疗在养老院的设置中并不总是可用的。需要测试实用策略，以便在养老院中实施姑息治疗计划。
方法/设计：UPLIFT-AD（利用设施中的姑息治疗领导者来改变患有阿尔茨海默病的人的护理）研究是在马里兰州和印第安纳州的 16 家养老院中进行的一项实用分步楔形试验，测试干预措施的有效性，同时评估其实施情况。拟议的干预措施是姑息治疗方案，包括 1）培训至少两名设施工作人员作为姑息治疗负责人，2）为所有工作人员提供姑息治疗一般原则的培训，3）进行姑息治疗需求的结构化筛查，以及 4）在为期一年的干预期间提供现场专业姑息治疗咨询。所有至少有中度认知障碍、在设施中至少 30 天且基线时不在临终关怀的居民都被认为有资格参加。从法律决策者处获得选择退出同意。在四个时间点从工作人员和家庭代理受访者处获得衡量症状和护理质量的结果评估：实施前（基线）、实施后六个月、12 个月（实施结束）和实施结束后六个月。通过在实施前后对一线养老院工作人员进行调查，评估姑息治疗态度和实践。还收集定性和定量实施数据，包括保真度评估和姑息治疗负责人的访谈。该研究将遵循《赫尔辛基宣言》。
这项试验评估了在 16 家不同的养老院中对中度至重度认知障碍的居民实施一项强大的姑息治疗干预措施的实施情况和效果。该干预措施代表了一种创新的、实用的方法，包括对一线养老院工作人员的内部能力建设，以及来自外部姑息治疗专业顾问的支持。
该项目在 ClinicalTrials.gov 上注册：NCT04520698。
