Trial Outcomes & Findings for Our Care Wishes - Dementia (NCT NCT05033262)
NCT ID: NCT05033262
Last Updated: 2023-06-22
Results Overview
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).
Recruitment status
COMPLETED
Study phase
NA
Target enrollment
14 participants
Primary outcome timeframe
Baseline
Results posted on
2023-06-22
Participant Flow
Dyads (i.e., persons living with dementia (PLWD) and their shared decision-makers (SDMS) were initially recruited by nursing home staff. Then, study staff read an assent script to and reviewed study procedures with interested SDMs. SDMs who agreed to participate were sent a copy of the study summary and assent script. After verbal assent was acquired, dyads (PLWDs and SDMs) were assigned to the intervention group or control arm.
Enrolled participants are organized into 4 individual groups: PLWDs \& SDMs in the intervention and control arms. Dyads in all study arms who stopped answering study team calls after initial verbal telephone consent and did not complete the baseline interview were not considered enrolled and are excluded from the "Baseline \& Follow Up Surveys" period below. Demographics were collected during the baseline interview. Nursing home staff were not enrolled in the study.
Participant milestones
| Measure |
PLWD: Control
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWD: Intervention
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, PLWDs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
SDMs: Intervention
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Overall Study
STARTED
|
3
|
3
|
4
|
4
|
|
Overall Study
COMPLETED
|
2
|
3
|
4
|
3
|
|
Overall Study
NOT COMPLETED
|
1
|
0
|
0
|
1
|
Reasons for withdrawal
| Measure |
PLWD: Control
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWD: Intervention
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, PLWDs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
SDMs: Intervention
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Overall Study
Lost to Follow-up
|
1
|
0
|
0
|
1
|
Baseline Characteristics
Our Care Wishes - Dementia
Baseline characteristics by cohort
| Measure |
PLWD: Control
n=3 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
n=3 Participants
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWD: Intervention
n=4 Participants
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, PLWDs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
SDMs: Intervention
n=4 Participants
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
Total
n=14 Participants
Total of all reporting groups
|
|---|---|---|---|---|---|
|
Age, Categorical
<=18 years
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
0 Participants
n=21 Participants
|
|
Age, Categorical
Between 18 and 65 years
|
0 Participants
n=5 Participants
|
1 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
2 Participants
n=4 Participants
|
3 Participants
n=21 Participants
|
|
Age, Categorical
>=65 years
|
3 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
4 Participants
n=5 Participants
|
2 Participants
n=4 Participants
|
11 Participants
n=21 Participants
|
|
Age, Continuous
|
78.6 years
n=5 Participants
|
64 years
n=7 Participants
|
89.3 years
n=5 Participants
|
65.5 years
n=4 Participants
|
74.8 years
n=21 Participants
|
|
Sex: Female, Male
Female
|
1 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
2 Participants
n=5 Participants
|
3 Participants
n=4 Participants
|
8 Participants
n=21 Participants
|
|
Sex: Female, Male
Male
|
2 Participants
n=5 Participants
|
1 Participants
n=7 Participants
|
2 Participants
n=5 Participants
|
1 Participants
n=4 Participants
|
6 Participants
n=21 Participants
|
|
Ethnicity (NIH/OMB)
Hispanic or Latino
|
1 Participants
n=5 Participants
|
1 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
2 Participants
n=21 Participants
|
|
Ethnicity (NIH/OMB)
Not Hispanic or Latino
|
2 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
4 Participants
n=5 Participants
|
4 Participants
n=4 Participants
|
12 Participants
n=21 Participants
|
|
Ethnicity (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
0 Participants
n=21 Participants
|
|
Race (NIH/OMB)
American Indian or Alaska Native
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
0 Participants
n=21 Participants
|
|
Race (NIH/OMB)
Asian
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
1 Participants
n=5 Participants
|
1 Participants
n=4 Participants
|
2 Participants
n=21 Participants
|
|
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
0 Participants
n=21 Participants
|
|
Race (NIH/OMB)
Black or African American
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
0 Participants
n=21 Participants
|
|
Race (NIH/OMB)
White
|
2 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
3 Participants
n=5 Participants
|
3 Participants
n=4 Participants
|
10 Participants
n=21 Participants
|
|
Race (NIH/OMB)
More than one race
|
1 Participants
n=5 Participants
|
1 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
2 Participants
n=21 Participants
|
|
Race (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
0 Participants
n=5 Participants
|
0 Participants
n=4 Participants
|
0 Participants
n=21 Participants
|
|
Region of Enrollment
United States
|
3 participants
n=5 Participants
|
3 participants
n=7 Participants
|
4 participants
n=5 Participants
|
4 participants
n=4 Participants
|
14 participants
n=21 Participants
|
PRIMARY outcome
Timeframe: BaselinePopulation: SDMs and PLWDs in all study arms that completed the baseline interview were analyzed.
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).
Outcome measures
| Measure |
PLWD: Control
n=3 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
n=3 Participants
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWDs: Intervention
n=4 Participants
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
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.
|
SDMs: Intervention
n=4 Participants
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Adapted Decision Making Confidence Scale
|
4.8 score on a scale
Interval 4.5 to 5.0
|
4.7 score on a scale
Interval 4.2 to 5.0
|
3.7 score on a scale
Interval 1.0 to 5.0
|
5 score on a scale
Interval 5.0 to 5.0
|
PRIMARY outcome
Timeframe: 1 weekPopulation: 1 PLWD from the control group and 1 SDM from the Intervention group were lost to follow up. Data was not collected at this timepoint and so were not analyzed.
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.
Outcome measures
| Measure |
PLWD: Control
n=2 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
n=3 Participants
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWDs: Intervention
n=4 Participants
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
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.
|
SDMs: Intervention
n=3 Participants
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Post Adapted Decision Making Confidence Scale
|
4.9 units on a scale
Interval 4.8 to 5.0
|
4.7 units on a scale
Interval 4.4 to 5.0
|
4.25 units on a scale
Interval 2.0 to 5.0
|
5 units on a scale
Interval 5.0 to 5.0
|
PRIMARY outcome
Timeframe: 1 weekPopulation: SDMs tended to navigate the website and use the website to facilitate advanced care planning discussions with PLWDs. PLWDs participated in conversations about advanced care planning decisions but often did not actively use the website and so were not always able to answer or understand the questions regarding the website. In the end, only one PLWD from the intervention group was able to answer the questions about the website's ease of use. Thus, the score below indicates that PLWD's rating.
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.
Outcome measures
| Measure |
PLWD: Control
n=1 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
n=3 Participants
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWDs: Intervention
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
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.
|
SDMs: Intervention
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Website Ease of Use
|
7 score on a scale
Interval 7.0 to 7.0
|
9 score on a scale
Interval 8.0 to 10.0
|
—
|
—
|
PRIMARY outcome
Timeframe: 1 weekPopulation: Total time SDMs spent navigating the Our Memory Care Wishes website was captured for each SDM in the intervention group.
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.
Outcome measures
| Measure |
PLWD: Control
n=4 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWDs: Intervention
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
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.
|
SDMs: Intervention
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Rate of ACP Website Completion - Time
|
42.93 minutes
Interval 35.25 to 78.75
|
—
|
—
|
—
|
PRIMARY outcome
Timeframe: 1 weekPopulation: Percentage of website completed was captured for SDMs as they were primary navigators of the website.
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.
Outcome measures
| Measure |
PLWD: Control
n=4 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWDs: Intervention
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
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.
|
SDMs: Intervention
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
Rate of ACP Website Completion - Questions Completed
|
69 percentage of website completed
Interval 21.0 to 92.0
|
—
|
—
|
—
|
OTHER_PRE_SPECIFIED outcome
Timeframe: 1 weekPopulation: 1 PLWD in the control group was lost to follow up. 1 SDM in the control group was lost to follow up. 1 PLWD in the intervention group was lost to follow up. 1 SMD in the intervention group was lost to follow up.
Participants were asked if their healthcare preferences changed due to the COVID-19 pandemic. Items included: 1. Since COVID, planning for the future is: (1) less important (2) more important, or (3) the same 2. Since COVID, the sense of urgency to name a supportive decision maker has: (1) increased (2) decreased, or (3) remained the same. 3. Since COVID, my preferences for decisions about breathing machines (ventilators) have: (1) changed or (2) remained the same. 4. Since COVID, my preferences for going to the hospital for care versus receiving treatment in place have:(1) changed, or (2) remained the same.
Outcome measures
| Measure |
PLWD: Control
n=2 Participants
Participants living with dementia randomized to the control group will receive usual advanced care planning help from nursing facility staff and will not complete the Our Memory Care Wishes website.
Participants will complete surveys that capture confidence in decision-making at baseline and 1 week. Participants will complete these surveys alongside their shared decision makers.
|
SDMs: Control
n=3 Participants
Shared decision-makers of persons living with dementia randomized to the control group will work with their care receiver to have usual advanced care planning discussions with nursing facility staff. SDMs in the control group will not complete the Our Memory Care Wishes website.
SDMs will complete surveys that capture confidence in decision-making at baseline and 1 week. SDMs will complete these surveys alongside the nursing home resident they care for.
|
PLWDs: Intervention
n=3 Participants
Persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview alongside their shared decision-maker (SDM) that collects demographics and their confidence in decision-making.
Then PLWDs will work with their SDM to complete the Our Memory Care Wishes website with the PLWD. 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.
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.
|
SDMs: Intervention
n=3 Participants
Shared decision-makers (SDMs) of persons living with dementia (PLWD) randomized to the intervention group will complete a baseline interview that collects demographics and their confidence in decision-making when it comes to being a surrogate for the PLWD.
Then, SDMs will complete the Our Memory Care Wishes website with the PLWD. 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.
1 week after completing the website, SDMs will complete a follow up interview collecting their confidence in decision-making, ratings of the website and how COVID has affected their decision-making.
|
|---|---|---|---|---|
|
COVID-19 Impact Questionnaire
Participants who reported a change in importance level for planning for the future since COVID-19.
|
1 Participants
|
1 Participants
|
1 Participants
|
1 Participants
|
|
COVID-19 Impact Questionnaire
Change in the sense of urgency to name a supportive decision maker since COVID-19
|
0 Participants
|
2 Participants
|
0 Participants
|
1 Participants
|
|
COVID-19 Impact Questionnaire
Participants who reported a change in breathing machine preferences since COVID-19.
|
0 Participants
|
1 Participants
|
0 Participants
|
1 Participants
|
|
COVID-19 Impact Questionnaire
Participants whose preferences for going to the hospital for care versus receiving treatment changed
|
0 Participants
|
1 Participants
|
0 Participants
|
1 Participants
|
Adverse Events
Control
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Intervention
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Serious adverse events
Adverse event data not reported
Other adverse events
Adverse event data not reported
Additional Information
Emily Summerhayes
The University of Pennsylvania School of Nursing
Phone: 6099233786
Email: [email protected]
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place