Reducing Burden in Care Partners of Community-Dwelling Persons With Dementia and Oropharyngeal Dysphagia
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Caregiver Burden
- Sponsor
- Northwell Health
- Enrollment
- 80
- Locations
- 1
- Primary Endpoint
- Change from Baseline in Mean Care Partner Burden at 3 Months Post Hospital Discharge
- Status
- Completed
- Last Updated
- 7 months ago
Overview
Brief Summary
The goal of this clinical trial is to learn if a newly-created website tool, called WeCareToFeedDysphagia, helps to reduce feelings of burden in care partners of patients with Alzheimer's disease and related dementias (AD/ADRD) who were diagnosed with trouble swallowing (oropharyngeal dysphagia). The main questions this first test (pilot) study aims to answer are:
- With the data this pilot study will collect, how do we best measure how strong a relationship is between care partners who use WeCareToFeedDysphagia and reduced feelings of burden (effect size estimates)?
- Is it possible (feasible) to successfully repeat this study in a larger clinical trial with more research participants?
Researchers will compare a group of care partners who have access to the WeCareToFeedDysphagia tool (intervention) to a group of care partners who do not have access to the tool. Both groups will receive contact information for help from a speech language pathologist expert (enhanced usual care).
Participants will:
- be given access to the web tool and receive 3 text message reminders over 3 weeks to use the tool (intervention group only).
- be asked to complete a remote, web-based survey three times: when enrolled in the study, at 1 month following patient leaving the hospital, and at 3 months following patient leaving the hospital.
Investigators
Liron Sinvani
Associate Professor
Northwell Health
Eligibility Criteria
Inclusion Criteria
- •Self identifies as the primary care partner of an older adult patient (patient aged 65 years or older) with Alzheimer's disease and related dementias (AD/ADRD) and oropharyngeal dysphagia (OD) admitted to the Northwell Health medicine service
- •Care partner age 18 years or older
- •Designated as the legally authorized representative (LAR) or health care proxy (HCP), or designated by the LAR or HCP to participate
- •Proficient in English
- •Has access to a device (e.g. smartphone, iPad, computer) capable of accessing a web browser
Exclusion Criteria
- •Care partner of patient with a percutaneous feeding tube \[i.e. percutaneous endoscopic gastrostomy (PEG) tube, percutaneous endoscopic jejunostomy (PEJ) used exclusively\]
- •Care partner of patient who will not be discharged to the home or community setting (e.g., home, assisted living, independent living)
- •Care partner will not be involved with OD management (e.g. buying or making food, feeding, supervising) after hospital discharge
Outcomes
Primary Outcomes
Change from Baseline in Mean Care Partner Burden at 3 Months Post Hospital Discharge
Time Frame: Baseline and 3 months
Burden will be measured using the Zarit Burden Scale (ZBI-22), a validated measure that assesses 22 statements related to personal strain accompanying caring for another person, which is rated with 5 frequency-related response categories, scored 0 (never) to 4 (nearly always). The total score ranges between 0 and 88 (higher scores indicating higher burden). A score less than 21 has been suggested to indicate care-partner burden. Outcome measures will be captured through a link to an online questionnaire which will be sent to the care partner's smart phone/device via text message. Change will be calculated as the mean value at 3 months minus the mean value at baseline.
Secondary Outcomes
- Percent Care Partner Attrition at 1 Month Post Hospital Discharge(1 Month Post Hospital Discharge.)
- Change from Baseline in Mean Care Partner Burden at 1 Month Post Hospital Discharge(Baseline and 1 Month Post Hospital Discharge)
- Percent Consented in Pilot Study(Study completion, up to 1 year)
- Percent Care Partner Attrition at 3 Months Post Hospital Discharge(3 Months Post Hospital Discharge.)
- Change from Baseline in Care Partner Quality of Life at 1 Month Post Hospital Discharge(Baseline and 1 Month Post Hospital Discharge)
- Change from Baseline in Care Partner Quality of Life at 3 Months Post Hospital Discharge(Baseline and 3 Months Post Hospital Discharge)
- Percent Engagement with the WeCareToFeedDysphagia Tool(3 Months Post Hospital Discharge)