The Calgary Movement Disorders Advanced Care Pilot Program
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 100
- 试验地点
- 1
- 主要终点
- Changes in 12-Item Zarit Burden Interview (ZBI-12)
研究概览
简要总结
The goal of this clinical trial is to analyse the effect of palliative care interventions on quality of life, patient satisfaction, carepartner burden and health care utilization patterns in patients living with parkisonism and their carepartners.
Participants will:
- Receive multidisciplinary palliative care.
- Answer questions related to the quality of life, patient satisfaction, carepartner burden and health care utilization patterns.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 20 Years 至 100 Years（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •Participants who have a PD diagnosis or another PDRD diagnosis (multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, or Lewy body dementia)
- •Participants who have moderate to high PC needs based on the Palliative Care Needs Assessment Tool (PC-NAT)
- •Participants who are between 20 and 100 years old
排除标准
- •Immediate and urgent palliative care needs. These patients will be offered appropriate services immediately
- •Participants who have other illnesses that could require PC e.g. metastatic cancer
- •Participants already receiving PC and/or hospice
- •Patients with a diagnosis of severe cognitive impairment (Montreal Cognitive Assessment <10). These patients will be offered appropriate services. Care partners can participate.
研究组 & 干预措施
Palliative care
Participants will receive palliative care.
干预措施: Palliative care (Behavioral)
结局指标
主要结局
Changes in 12-Item Zarit Burden Interview (ZBI-12)
时间窗: Every 3 months for 2 years
ZBI-12 is validated as a screening tool for advanced illness. The ZBI-12 is rated on a 12 items scale, with the severity of burden using a range of responses from 0 to 4 points per item and a total score range of 0 to 48. Scoring 0-10 is considered as a no to mild burden; 10-20, a mild to moderate burden and \>20, a high burden. It measures changes in physical, emotional, social, and financial problems that can be experienced by family caregivers.
Changes in Health Care Utilization survey
时间窗: Every 3 months for 2 years
We will perform a Health Service Utilization Survey to measure changes in the number of hospitalizations, emergency room visits, home health services, and nursing home placement.
Changes in Quality of Life Alzheimer's Disease (QOL-AD)
时间窗: Every 3 months for 2 years
The QOL-AD is a 13-item questionnaire designed to provide both a patient and a caregiver report of the quality of life (QOL), it uses a scale of 1-4 (poor, fair, good, or excellent) to rate a variety of life domains, including the patient's physical health, mood, relationships, activities, and ability to complete tasks.
次要结局
- Changes in the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT- Sp-12)(Every 3 months for 2 years)
- Semi-structured Qualitative Interview to receive Patient and Care Partner recommendations(Every 3 months for 2 years)
- Changes in Edmonton Symptom Assessment Scale revised for Parkinson's Disease (ESAS-PD)(Every 3 months for 2 years)
研究者
Veronica Bruno
MD, MPH
University of Calgary