Our Care Wishes - Dementia

Alzheimer Disease Clinical Trial

Official title:

Adaptation of the OurCareWishes.Org ACP Platform for Persons With Dementia in NHs and Their Caregivers

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT05033262
• Other study ID #: 834878
• Secondary ID: P30AG064105-01
• Status: Completed
• Phase: N/A
• Start date: October 7, 2020
• Est. completion date: September 8, 2021

Study information

• Verified date: June 2023
• Source: University of Pennsylvania
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial Summary

This Our Care Wishes- Dementia pilot study is adapting an existing successful online advance care planning platform to the specific needs of persons living with dementia and shared decision-makers (SDMs) and testing the usability and acceptability among nursing home residents and SDMs.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 14
• Est. completion date: September 8, 2021
• Est. primary completion date: September 8, 2021
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 21 Years and older

Eligibility

Inclusion Criteria:

• Eligible PLWD will be receiving short-or long-term care at a participating NH, have documented moderate to severe cognitive impairment as measured by the Cognitive Function Scale included in the Minimum Data Set 3.0, 65 and have an identified SDM.

Exclusion Criteria:

• Participants are not eligible discharged from participating NHs, or do not have access to a telephone or video chat.

Related Conditions & MeSH terms

• Alzheimer Disease
• Dementia
• Memory Impairment

Intervention

Other:
• Our Memory Care Wishes
Our Memory Care Wishes is a web-based advance care planning platform designed for persons living with dementia in nursing homes to discuss and document healthcare and daily life preferences with the help of shared decision-makers. Penn researchers meet via Zoom with PLWD and their SDMS and nursing home staff to facilitate website completion.

Locations

Country	Name	City	State
United States	University of Pennsylvania	Philadelphia	Pennsylvania

Sponsors (2)

Lead Sponsor	Collaborator
University of Pennsylvania	National Institute on Aging (NIA)

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Other	COVID-19 Impact Questionnaire	Participants were asked if their healthcare preferences changed due to the COVID-19 pandemic. Items included: Since COVID, planning for the future is: (1) less important (2) more important, or (3) the same; Since COVID, the sense of urgency to name a supportive decision maker has: (1) increased (2) decreased, or (3) remained the same.; Since COVID, my preferences for decisions about breathing machines (ventilators) have: (1) changed or (2) remained the same.; Since COVID, my preferences for going to the hospital for care versus receiving treatment in place have:(1) changed, or (2) remained the same.	1 week
Primary	Adapted Decision Making Confidence Scale	Items from the Surrogate Decision-Making Confidence Scale and 9-item ACP Engagement Survey were used and adapted to capture the confidence in advanced care planning decision-making from both persons living with dementia and their shared decision-maker' points of view. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).	Baseline
Primary	Post Adapted Decision Making Confidence Scale	Items from the Surrogate Decision-Making Confidence Scale and 9-item ACP Engagement Survey were used and adapted to capture the confidence in advanced care planning decision-making from both persons living with dementia and their shared decision-maker' points of view. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident). This is the second time point the measure was collected.	1 week
Primary	Website Ease of Use	This scale measures the ease of use of the website. This scale uses a Likert scale from 0 (very hard) to 10 (very easy). These data were collected from PLWDs and SDMs in the intervention group.	1 week
Primary	Rate of ACP Website Completion - Time	This tool measured total time spent by participants on the advance care planning website. Total time in minutes spent on the website were collected. Because SDMs navigated the website with the PLWD alongside them, this measure was only used to SDMs in the intervention group.	1 week
Primary	Rate of ACP Website Completion - Questions Completed	This tool measured what percentage of the website was completed by participants. Because SDMs navigated the website with the PLWD alongside them, this measure was only associated with SDMs in the intervention group.	1 week