Utilizing Palliative Leaders In Facilities to Transform Care for Alzheimer's Disease
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 1,322
- 试验地点
- 1
- 主要终点
- Change in End-of-Life Dementia - Comfort Assessment In Dying scale (EOLD-CAD)
研究概览
简要总结
The purpose of this study is to evaluate a comprehensive model for integrating both primary and specialty Palliative Care for older adults with dementia into nursing facilities. Palliative Care is a supportive care approach that aims to improve the quality of life of patients and their families facing serious or life-threatening illnesses, through the prevention and relief of suffering through the treatment of pain and other problems, using physical, psychosocial and spiritual approaches. Palliative care is specialized medical care for people who are living with a serious illness. This type of care is focused on providing relief from the symptoms and from the stress of the illness. The goal is to improve quality of life for both patient and family.
The UPLIFT-AD model will include providing education on primary Palliative Care for residents with dementia to nursing facility staff, training nursing facility staff in providing primary Palliative Care, and providing access to specialty Palliative Care consultations for residents. To help understand the impact of these interventions, this study will also collect information about resident health, the care they receive, and perceptions of their quality of life according to both family members and nursing facility staff.
详细描述
The objective of this proposal is to evaluate the effectiveness of the UPLIFT-AD (Utilizing Palliative Leaders In Facilities to Transform care for Alzheimer's Disease) intervention and to assess the implementation context of the intervention using a hybrid 1 trial design. The UPLIFT-AD intervention includes 1) in-house PC champions trained to facilitate goals of care conversations with residents with Alzheimer's Disease and Related Dementias (ADRD) and their surrogate decision-makers, screen residents for symptoms and other PC needs, provide symptom management and serve as a liaison to external PC consultants; 2) specialty PC consultants who provide consults for complex residents and families; and 3) primary PC education for nursing home (NH) staff. The study will use a randomized, stepped wedge design involving 16 diverse NHs in Indiana and Maryland and 640 residents, 640 family members and/or surrogate decision-makers, and 320 nursing facility staff.
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Crossover
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •NURSING HOME RESIDENTS:
- •Long-stay resident in an enrolled nursing home defined as not paying through Medicare Part A at the enrolled facility.
- •Has a diagnosis of moderate to severe ADRD, as measured on the Minimum Data Set (MDS)
- •Length of stay >30 days
- •FAMILY MEMBERS/SURROGATE DECISION MAKERS:
- •Family member and/or surrogate decision maker for an eligible resident in an enrolled nursing home
- •English-speaking
- •NURSING HOME STAFF:
- •Staff, nurse, or nurse assistant in an enrolled nursing facility
- •English-speaking
排除标准
- •NURSING HOME RESIDENTS:
- •Short-stay resident, defined as paying through Medicare Part A at the enrolled facility and/or receiving respite care
- •FAMILY MEMBERS/SURROGATE DECISION MAKERS:
- •Non-English-speaking
- •NURSING FACILITY STAFF:
- •Non-English-speaking
研究组 & 干预措施
Nursing Home-level UPLIFT-AD intervention
The UPLIFT-AD intervention consists of three major components delivered at the level of the nursing home: 1) in-house PC champions trained to a) facilitate advance care planning conversations with residents with Alzheimer's Disease and Related Dementias and their surrogate decision-makers, b) screen and follow up on residents' Palliative Care needs and c) serve as a liaison to Palliative Care consultants; 2) specialty Palliative Care consultant support providing individual consults for residents with complex Palliative Care needs; and 3) education on primary Palliative Care offered to all clinical NH staff.
干预措施: UPLIFT-AD (Behavioral)
Usual Care
Usual nursing home care.
结局指标
主要结局
Change in End-of-Life Dementia - Comfort Assessment In Dying scale (EOLD-CAD)
时间窗: Baseline (prior to intervention) and12 months (post intervention implementation)
Nursing home staff and family members reported symptom frequency and intensity for 18 symptoms in the past 30 days. Symptom assessment was derived from the End-of-Life in Dementia Comfort Assessment in Dying (EOLD-CAD) and End-of-Life in Dementia Symptom Management (EOLD-SM) instruments. These symptoms included pain, discomfort, shortness of breath, choking, gurgling, difficulty swallowing, skin breakdown, restlessness, agitation, anxiety, depression, fear, crying, moaning, resistiveness to care, calm, serenity, peace. If the symptom did occur, respondents were asked if it had occurred once a month, 2-3 days a month, once a week, several days a week, or every day (ranging 0-5) and asked if the symptom was not at all intense, somewhat intense or very intense (ranging 1-3). Frequency and intensity were multiplied together for a score of 0-15 per symptom. A total score was derived by calculating the sum score and dividing by number of items. Higher scores indicate greater symptom burden.
次要结局
- Change in End of Life Dementia - Satisfaction with Care (EOLD-SWC) scale(Baseline (prior to intervention) and 12 months (post intervention implementation))
- Change in Family Distress in Advanced Dementia Scale (Modified)(Baseline (prior to intervention) and 12 months (post intervention implementation))
- Change in Quality-of-life (QOL)(Baseline (prior to intervention) and 12 months (post intervention implementation))
- Change in staff palliative care knowledge(Baseline and 6 months (post intervention implementation))
- Quality of Dying in Long-Term Care (QOD-LTC)(Collected post-death)
研究者
Kathleen T. Unroe
Associate Professor of Medicine
Indiana University