WeCareToFeedDysphagia to Reduce Care-partner Burden Full-scale RCT
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: WeCareToFeedDysphagia web tool.
- Who it may be relevant to
- Registry conditions: Caregiver Burden, Alzheimer's Disease, Dementia, Oropharyngeal Dysphagia. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
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 study aims to answer are: * How effective is the WeCareToFeedDysphagia tool in reducing feelings of burden in care partners? * Does the WeCareToFeed Dysphagia tool help improve patient outcomes? * Does care partner age, gender, and patient dysphagia severity impact the strength of the effect of the WeCareToFeedDysphagia tool? * Is the strength of the effect of the WeCareToFeedDysphagia tool impacted by care partner's beliefs in being able to manage behavior and stress (self-efficacy)? 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.
Interventions
- Behavioral WeCareToFeedDysphagia web tool
The web tool uses written and video content, care-partner testimonials, frequently asked questions, and resource links to provide accurate information (e.g., dysphagia diets), set realistic expectations, identify/support feeding goals (quality of life considerations), acknowledge/support care-partner feelings, and provide competencies/skills for oropharyngeal dysphagia (OD) management.
Primary outcome measures
- Mean Care Partner Burden at 3 Months Post Hospital Discharge [Time frame: 3 months from hospital discharge]
Secondary outcome measures (4)
- Mean Care Partner Burden at 1 Month Post Hospital Discharge [Time frame: 1 month from hospital discharge]
- Mean Care Partner Quality of Life at 1 Month Post Hospital Discharge [Time frame: 1 month from hospital discharge]
- Mean Care Partner Quality of Life at 3 Months Post Hospital Discharge [Time frame: 3 months from hospital discharge]
- Percent Engagement with the WeCareToFeedDysphagia Tool [Time frame: 3 months from hospital discharge]
Eligibility criteria
Inclusion criteria
- Self-identifies as the primary care partner of an older adult patient (patient age ≥ 65 years) with AD/ADRD and oropharyngeal dysphagia (OD) admitted to the Northwell medicine service
- Age ≥ 18 years
- 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. PEG, 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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Allocation
- Randomized
- Model
- Parallel assignment
- Masking
- Double blind
- Primary purpose
- Supportive care
Study locations
United States · 1 center
- The Feinstein Institutes for Medical Research — Manhasset
Identifiers
NCT: NCT07250113 · 25-0388 · R33AG079930