The Calgary Movement Disorders Advanced Care Pilot Program
- Conditions
- Parkinson's Disease and Parkinsonism
- Interventions
- Behavioral: Palliative care
- Registration Number
- NCT05599659
- Lead Sponsor
- University of Calgary
- Brief Summary
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.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- NOT_YET_RECRUITING
- Sex
- All
- Target Recruitment
- 100
- 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
- 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.
Study & Design
- Study Type
- INTERVENTIONAL
- Study Design
- SINGLE_GROUP
- Arm && Interventions
Group Intervention Description Palliative care Palliative care Participants will receive palliative care.
- Primary Outcome Measures
Name Time Method Changes in 12-Item Zarit Burden Interview (ZBI-12) 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 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) 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.
- Secondary Outcome Measures
Name Time Method Changes in the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT- Sp-12) Every 3 months for 2 years The 12-item Spiritual Well-Being Scale (FACIT-Sp-12) is the most widely used measure of spiritual well-being among those with long-term illness. The FACIT-Sp comprises 12 statements, or items, each of which is rated on a 5-point scale by the respondent based on how true the item was during the past week, 0 for not at all, 1 for a little bit, 2 for somewhat, 3 for quite a bit and 5 for very much.
Semi-structured Qualitative Interview to receive Patient and Care Partner recommendations Every 3 months for 2 years It will be performed on patients and care partners for optimizing the palliative care services provided and delivery methods.
Changes in Edmonton Symptom Assessment Scale revised for Parkinson's Disease (ESAS-PD) Every 3 months for 2 years The ESAS is a comprehensive, yet brief and practical self-reporting tool of symptom severity (intensity) for nine common symptoms of advanced cancer (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, shortness of breath), with the option of adding a tenth patient-specific symptom. It rates the severity of each symptom on a 0 to 10 scale, where 0 represents the absence (or best possible intensity) of the symptom and 10 represents the worst possible severity.
Trial Locations
- Locations (1)
Movement Disorder Program, Foothills Medical Center, Alberta Health Services
🇨🇦Calgary, Alberta, Canada