Our Care Wishes - Dementia

Sponsor
University of Pennsylvania (Other)
Overall Status
Completed
CT.gov ID
NCT05033262
Collaborator
(none)
14
1
2
11
1.3

Study Details

Study Description

Brief 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.

Condition or Disease Intervention/Treatment Phase
  • Other: Our Memory Care Wishes
N/A

Study Design

Study Type:
Interventional
Actual Enrollment :
14 participants
Allocation:
Randomized
Intervention Model:
Parallel Assignment
Masking:
Double (Investigator, Outcomes Assessor)
Primary Purpose:
Supportive Care
Official Title:
Adaptation of the OurCareWishes.Org ACP Platform for Persons With Dementia in NHs and Their Caregivers
Actual Study Start Date :
Oct 7, 2020
Actual Primary Completion Date :
Sep 8, 2021
Actual Study Completion Date :
Sep 8, 2021

Arms and Interventions

Arm Intervention/Treatment
No Intervention: Control

Experimental: 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.

Outcome Measures

Primary Outcome Measures

  1. Surrogate Decision Making Confidence Scale [Baseline]

    This scale measures how confident surrogate decision-makers (primary caregivers in this study) are making decisions about loved ones living with dementia. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).

  2. Post Surrogate Decision Making Confidence Scale [1 week]

    This scale measures how confident surrogate decision-makers (primary caregivers in this study) are making decisions about loved ones living with dementia. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).

  3. Adapted Decision Making Confidence Scale [Baseline]

    This scale is the surrogate decision making confidence scale adapted to measure the confidence of nursing home residents living with dementia when making decisions about their preferences. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).

  4. Post Adapted Decision Making Confidence Scale [1 week]

    This scale is the surrogate decision making confidence scale adapted to measure the confidence of nursing home residents living with dementia when making decisions about their preferences. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).

  5. 9-item ACP Engagement Survey [Baseline]

    This scale measures how confident surrogate decision-makers (primary caregivers in this study) are when communicating with healthcare teams and their loved ones (persons living with dementia) about their advance care plans. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).

  6. Post 9-item ACP Engagement Survey [1 week]

    This scale measures how confident surrogate decision-makers (primary caregivers in this study) are when communicating with healthcare teams and their loved ones (persons living with dementia) about their advance care plans. The scale utilizes a Likert scale with values ranging from 1 (not confident at all) to 5 (very confident).

  7. Website ease of use [1 week]

    This scale measures the usability of the advance care platform. This scale uses a Likert scale. The higher the score the participate chose, the easier, more helpful or comfortable the participate found the website.

  8. Rate of ACP Website Completion [1 week]

    This measure total time spent by participants on the advance care planning website and individual modules as well as total questions answered.

Secondary Outcome Measures

  1. COVID-19 Impact Questionnaire [1 week]

    This scale measures how participants' advance care planning decisions were impacted by the COVID-19 pandemic. Participants can choose whether or not the COVID-19 pandemic affected their healthcare preferences, specifically if participants prefer to receive care via a ventilator and if participants prefer to receive treatment in nursing facility over visiting the hospital.

Eligibility Criteria

Criteria

Ages Eligible for Study:
21 Years and Older
Sexes Eligible for Study:
All
Accepts Healthy Volunteers:
Yes
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.

Contacts and Locations

Locations

Site City State Country Postal Code
1 University of Pennsylvania Philadelphia Pennsylvania United States 19104-4217

Sponsors and Collaborators

  • University of Pennsylvania

Investigators

None specified.

Study Documents (Full-Text)

None provided.

More Information

Publications

None provided.
Responsible Party:
University of Pennsylvania
ClinicalTrials.gov Identifier:
NCT05033262
Other Study ID Numbers:
  • 834878
First Posted:
Sep 2, 2021
Last Update Posted:
Nov 17, 2021
Last Verified:
Nov 1, 2021
Individual Participant Data (IPD) Sharing Statement:
Undecided
Plan to Share IPD:
Undecided
Studies a U.S. FDA-regulated Drug Product:
No
Studies a U.S. FDA-regulated Device Product:
No
Keywords provided by University of Pennsylvania
Additional relevant MeSH terms:

Study Results

No Results Posted as of Nov 17, 2021