The Calgary Movement Disorders Advanced Care Pilot Program
ACT for PD
1 other identifier
interventional
100
1 country
1
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for not_applicable
Started Nov 2022
Typical duration for not_applicable
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
October 12, 2022
CompletedFirst Posted
Study publicly available on registry
October 31, 2022
CompletedStudy Start
First participant enrolled
November 4, 2022
CompletedPrimary Completion
Last participant's last visit for primary outcome
November 4, 2024
CompletedStudy Completion
Last participant's last visit for all outcomes
November 4, 2024
CompletedOctober 31, 2022
October 1, 2022
2 years
October 12, 2022
October 28, 2022
Conditions
Keywords
Outcome Measures
Primary Outcomes (3)
Changes in Quality of Life Alzheimer's Disease (QOL-AD)
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.
Every 3 months for 2 years
Changes in 12-Item Zarit Burden Interview (ZBI-12)
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.
Every 3 months for 2 years
Changes in Health Care Utilization survey
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.
Every 3 months for 2 years
Secondary Outcomes (3)
Changes in Edmonton Symptom Assessment Scale revised for Parkinson's Disease (ESAS-PD)
Every 3 months for 2 years
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
Study Arms (1)
Palliative care
EXPERIMENTALParticipants will receive palliative care.
Interventions
It is a pilot model of outpatient clinical care for patients in advanced stages of PDRD that will allow earlier access to PC in this population. PC visits will be in person or by telemedicine every three months and complemented with phone calls by different team members when needed as defined by the PC team. The typical visit duration will be 2 to 2.5 hours and address nonmotor symptoms, goals of care, anticipatory guidance, difficult emotions, and carepartner support. Providers will communicate in-person or via notes during the clinic visit to increase interdisciplinary coordination and meet at the end of the day for discussion including follow-up plans. The team will consist of a neurologist, a registered nurse with palliative care experience and training, a psychology counselor, a social worker, spiritual counselor and a research assistant.
Eligibility Criteria
You may qualify if:
- 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
You may not qualify if:
- 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.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Movement Disorder Program, Foothills Medical Center, Alberta Health Services
Calgary, Alberta, T2N 4N1, Canada
MeSH Terms
Conditions
Interventions
Condition Hierarchy (Ancestors)
Intervention Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- NA
- Masking
- NONE
- Purpose
- SUPPORTIVE CARE
- Intervention Model
- SINGLE GROUP
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- MD, MPH
Study Record Dates
First Submitted
October 12, 2022
First Posted
October 31, 2022
Study Start
November 4, 2022
Primary Completion
November 4, 2024
Study Completion
November 4, 2024
Last Updated
October 31, 2022
Record last verified: 2022-10
Data Sharing
- IPD Sharing
- Will not share