Clinical trial NCT05599659: The Calgary Movement Disorders Advanced Care Pilot Program
Official title: The Calgary Movement Disorders Advanced Care Pilot Program
Study type: INTERVENTIONAL
Overall status: UNKNOWN
Phase: NA
Conditions: Parkinson's Disease and Parkinsonism
Keywords: Palliative Care
Lead sponsor: University of Calgary
Sponsor class: OTHER
First posted: 2022-10-31
Enrollment: 100
Sex: ALL
Minimum age (years): 20
Maximum age (years): 100
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: The clinical trial is a prospective cohort study analysing 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.
Primary purpose: SUPPORTIVE_CARE

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.


Eligibility criteria: Inclusion Criteria:

* 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

Exclusion Criteria:

* 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.

Primary outcomes:
measure: Changes in Quality of Life Alzheimer's Disease (QOL-AD)
timeFrame: Every 3 months for 2 years
measure: Changes in 12-Item Zarit Burden Interview (ZBI-12)
timeFrame: Every 3 months for 2 years
measure: Changes in Health Care Utilization survey
timeFrame: Every 3 months for 2 years
Secondary outcomes:
measure: Changes in Edmonton Symptom Assessment Scale revised for Parkinson's Disease (ESAS-PD)
timeFrame: Every 3 months for 2 years
measure: Changes in the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT- Sp-12)
timeFrame: Every 3 months for 2 years
measure: Semi-structured Qualitative Interview to receive Patient and Care Partner recommendations
timeFrame: Every 3 months for 2 years
Other outcomes:
Locations:
city: Calgary
country: Canada
facility: Movement Disorder Program, Foothills Medical Center, Alberta Health Services
state: Alberta
Study officials:
References: