Reducing Burden in Care Partners of Community-Dwelling Persons With Dementia and Oropharyngeal Dysphagia

Northwell Health80 enrolled

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 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.

Study Type

INTERVENTIONAL

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

DOUBLE

Enrollment

Conditions

Caregiver Burden

Interventions

WeCareToFeedDysphagia web toolBEHAVIORAL

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.

Eligibility

Sex: ALLMin age: 18 Years

Medical Language ↔ Plain English

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

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.

Time frame: Baseline and 3 months

Secondary Outcomes

Change from Baseline in Mean Care Partner Burden at 1 Month Post Hospital Discharge

Time frame: Baseline and 1 Month Post Hospital Discharge

Change from Baseline in Care Partner Quality of Life at 1 Month Post Hospital Discharge

Care Partner Quality of Life (CarerQol) will be measured using the validated Care-Related Qol-7D. The Care-Related Qol-7D measures well-being (CarerQol-VAS or visual analog scale) and subjective burden. The CarerQol-VAS measures happiness, using endpoints between 'completely unhappy' (0) and 'completely happy' (10). Subjective burden is measured on 7 dimensions (fulfillment, relational problems, mental health, daily activities problems, physical health, and support), and rated as (i) no, (ii) some, and (iii) a lot. The weighted score ranges from 0-100 (worst to best caregiving situation). Higher scores indicate higher quality of life. 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 1 month minus the mean value at baseline.

Time frame: Baseline and 1 Month Post Hospital Discharge

Change from Baseline in Care Partner Quality of Life at 3 Months Post Hospital Discharge

Time frame: Baseline and 3 Months Post Hospital Discharge

Percent Engagement with the WeCareToFeedDysphagia Tool

Engagement with WeCareToFeedDysphagia will be defined as percent of care partners viewing 2 or more pages within the tool. Success will be defined as greater than or equal to 45% of care partners engaging with the tool. Data will be captured via Google Analytics data to assess program usage in the domains of time/date of login, duration of page views, and document downloaded Engagement with the tool will be reported for the intervention arm only.

Time frame: 3 Months Post Hospital Discharge

Percent Consented in Pilot Study

Percent consented will be calculated as care partners consented over eligible and approached. Success will be defined as greater than or equal to 40% of care partners approached will volunteer to enroll in the study.

Time frame: Study completion, up to 1 year

Percent Care Partner Attrition at 1 Month Post Hospital Discharge

Percent attrition will be calculated as the total number of consented participants who did not complete the 1 month assessment over the total number of consented participants. Success will be defined as less than or equal to 30% attrition at 1 month post hospital discharge.

Time frame: 1 Month Post Hospital Discharge.

Percent Care Partner Attrition at 3 Months Post Hospital Discharge

Percent attrition will be calculated as the total number of consented participants who did not complete the 3 month assessment over the total number of consented participants. Success will be defined as less than or equal to 30% attrition at 3 months post hospital discharge.

Time frame: 3 Months Post Hospital Discharge.