Trial Outcomes & Findings for Building a Bridge (BAB) Between Clinical and Community Care (NCT NCT03932812)

NCT ID: NCT03932812

Last Updated: 2022-12-16

Results Overview

Caregiver burden 12 item self report questionnaire; Minimum score 0, maximum score 36 with low scores showing less burden

Recruitment status

COMPLETED

Study phase

NA

Target enrollment

82 participants

Primary outcome timeframe

Change over time from baseline to 6-month

Results posted on

2022-12-16

Participant Flow

Participant milestones

Participant milestones
Measure
Options Counselor Health Educator Intervention Group
These individuals will receive the Options Counselor Health Educator Intervention Options Counselor Health Educator (OC-HE) Intervention: The OC-HE will meet in person with the participant one time and five times via telephone to provide options counseling based on modules developed by the research team
Control
These individuals will receive the typical standard of care treatment from clinics
Overall Study
STARTED
42
40
Overall Study
Baseline Interview
42
40
Overall Study
3 Month Survey
29
26
Overall Study
6 Month Survey
25
25
Overall Study
COMPLETED
25
25
Overall Study
NOT COMPLETED
17
15

Reasons for withdrawal

Reasons for withdrawal
Measure
Options Counselor Health Educator Intervention Group
These individuals will receive the Options Counselor Health Educator Intervention Options Counselor Health Educator (OC-HE) Intervention: The OC-HE will meet in person with the participant one time and five times via telephone to provide options counseling based on modules developed by the research team
Control
These individuals will receive the typical standard of care treatment from clinics
Overall Study
Lost to Follow-up
12
14
Overall Study
Death of care partner (person living with dementia)
5
1

Baseline Characteristics

Building a Bridge (BAB) Between Clinical and Community Care

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Options Counselor Health Educator Intervention Group
n=42 Participants
These individuals will receive the Options Counselor Health Educator Intervention Options Counselor Health Educator (OC-HE) Intervention: The OC-HE will meet in person with the participant one time and five times via telephone to provide options counseling based on modules developed by the research team
Control
n=40 Participants
These individuals will receive the typical standard of care treatment from clinics
Total
n=82 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
Age, Categorical
Between 18 and 65 years
11 Participants
n=5 Participants
12 Participants
n=7 Participants
23 Participants
n=5 Participants
Age, Categorical
>=65 years
31 Participants
n=5 Participants
28 Participants
n=7 Participants
59 Participants
n=5 Participants
Sex: Female, Male
Female
26 Participants
n=5 Participants
29 Participants
n=7 Participants
55 Participants
n=5 Participants
Sex: Female, Male
Male
16 Participants
n=5 Participants
11 Participants
n=7 Participants
27 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
1 Participants
n=5 Participants
1 Participants
n=7 Participants
2 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
41 Participants
n=5 Participants
37 Participants
n=7 Participants
78 Participants
n=5 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
0 Participants
n=5 Participants
2 Participants
n=7 Participants
2 Participants
n=5 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Asian
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 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
Race (NIH/OMB)
Black or African American
0 Participants
n=5 Participants
2 Participants
n=7 Participants
2 Participants
n=5 Participants
Race (NIH/OMB)
White
41 Participants
n=5 Participants
37 Participants
n=7 Participants
78 Participants
n=5 Participants
Race (NIH/OMB)
More than one race
0 Participants
n=5 Participants
0 Participants
n=7 Participants
0 Participants
n=5 Participants
Race (NIH/OMB)
Unknown or Not Reported
1 Participants
n=5 Participants
1 Participants
n=7 Participants
2 Participants
n=5 Participants
FAST Score
2.5 units on a scale
STANDARD_DEVIATION 13.9 • n=5 Participants
3.5 units on a scale
STANDARD_DEVIATION 13.3 • n=7 Participants
3.0 units on a scale
STANDARD_DEVIATION 13.5 • n=5 Participants

PRIMARY outcome

Timeframe: Change over time from baseline to 6-month

Population: All participants who completed baseline. Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

Caregiver burden 12 item self report questionnaire; Minimum score 0, maximum score 36 with low scores showing less burden

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=42 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=40 Participants
These individuals received the typical standard of care treatment from clinics
Modified Zarit Burden Interview
Baseline
19.429 Burden score
Standard Deviation 9.399
17.950 Burden score
Standard Deviation 8.348
Modified Zarit Burden Interview
3-month
32.207 Burden score
Standard Deviation 7.466
27.160 Burden score
Standard Deviation 6.811
Modified Zarit Burden Interview
6-month
31.375 Burden score
Standard Deviation 6.864
28.615 Burden score
Standard Deviation 8.208

SECONDARY outcome

Timeframe: Change over time from baseline to 6-month

Population: Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

Established measure of the extent to which caregiver knows about formal services available in their communities. Participants answer the extent to which (on a five-point Likert scale from "not at all true of me" to "completely true of me") they are informed about federal programs, that they know what to do to get help, that they know how to get the person they care for into a nursing home, that they are aware of how to pay for a nursing home, that they can get information about different options for getting care, that they know which home health care agencies are active in their area, that they know which nursing facilities are available in their area, and how to get assistance due to COVID (added later). The scale ranges from "Not True at all of me" to "Completely true of me", where these answers and those in between score 1-5. The scale is scored by adding up these scores of the 8 questions. Thus, the range is 8-40, with a 40 being the highest knowledge of formal services.

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=42 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=40 Participants
These individuals received the typical standard of care treatment from clinics
Knowledge of Formal Services
Baseline
25.381 score on a scale
Standard Deviation 8.704
25.350 score on a scale
Standard Deviation 8.678
Knowledge of Formal Services
3-month
29.690 score on a scale
Standard Deviation 7.607
28.154 score on a scale
Standard Deviation 7.953
Knowledge of Formal Services
6-month
29.520 score on a scale
Standard Deviation 9.315
28.222 score on a scale
Standard Deviation 7.567

SECONDARY outcome

Timeframe: Change over time from baseline to 6-month

Population: Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

Ten item measure assessing the extent to which the individual is experiencing depressive symptoms. Questions ask about how often feelings or events happen in a week on a scale from None of the time, where less than one day receives 0 points, to Most of the time, where 5 to 7 days receives 3 points. The lowest score is a 0, indicating no depression. The highest score is 30, indicating high depression.

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=39 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=36 Participants
These individuals received the typical standard of care treatment from clinics
Center for Epidemiologic Studies Depression
Baseline
4.051 score on a scale
Standard Deviation 4.751
2.806 score on a scale
Standard Deviation 3.710
Center for Epidemiologic Studies Depression
3-month
19.517 score on a scale
Standard Deviation 7.740
19.640 score on a scale
Standard Deviation 7.804
Center for Epidemiologic Studies Depression
6-month
7.240 score on a scale
Standard Deviation 6.741
5.815 score on a scale
Standard Deviation 4.261

SECONDARY outcome

Timeframe: Change over time from baseline to 6-month

Population: Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

Self-reported measure of the number of times participants have visited a doctor or other health care provider unexpectedly in the past 6 months. The lowest score could be 0, indicating no emergency care use and the highest score for each could be 180 days, indicating that the participant visited a doctor or health care provider every day for the past six months

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=42 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=40 Participants
These individuals received the typical standard of care treatment from clinics
Emergency Care Use
Baseline
0.714 Visits
Standard Deviation 1.255
0.750 Visits
Standard Deviation 1.296
Emergency Care Use
3-months
0.207 Visits
Standard Deviation 0.491
0.320 Visits
Standard Deviation 0.476
Emergency Care Use
6-months
0.292 Visits
Standard Deviation 0.908
0.346 Visits
Standard Deviation 0.562

SECONDARY outcome

Timeframe: Change over time from baseline to 6-month

Population: Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

Count of network members engaging in supportive interactions (Uplift) for each caregiver. Each caregiver had network members providing different levels of support. There are 8 survey questions to indicate whether network members engaged in uplifting interactions in any way. A network member with at least one interaction is counted. At each time point, the questions are asked again and reevaluated.

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=41 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=40 Participants
These individuals received the typical standard of care treatment from clinics
Social Network-Uplift
Baseline
11.439 Count of support network members for a c
Standard Deviation 6.786
10.750 Count of support network members for a c
Standard Deviation 5.088
Social Network-Uplift
3-month
8.448 Count of support network members for a c
Standard Deviation 5.494
12.400 Count of support network members for a c
Standard Deviation 5.331
Social Network-Uplift
6-month
7.880 Count of support network members for a c
Standard Deviation 5.102
9.889 Count of support network members for a c
Standard Deviation 5.423

SECONDARY outcome

Timeframe: Change over time from baseline to 6-month

Population: Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

Count of network members engaging in negative caregiving social interactions (Malfeasant) for each caregiver. Each caregiver had network members providing different levels of support. There are 7 survey questions to indicate whether network members engaged in malfeasant interactions in any way. A network member with at least one interaction is counted. At each time point, the questions are asked again and reevaluated.

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=41 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=40 Participants
These individuals received the typical standard of care treatment from clinics
Social Network-Malfeasant
6-month
1.520 Count of support network members for a c
Standard Deviation 1.418
0.852 Count of support network members for a c
Standard Deviation 1.027
Social Network-Malfeasant
Baseline
2.098 Count of support network members for a c
Standard Deviation 2.035
1.800 Count of support network members for a c
Standard Deviation 1.436
Social Network-Malfeasant
3-month
4.966 Count of support network members for a c
Standard Deviation 4.395
8.360 Count of support network members for a c
Standard Deviation 5.992

OTHER_PRE_SPECIFIED outcome

Timeframe: Change over time from baseline to 6-month

Population: Note that the discrepancies in the number analyzed at different time points are due to patients dropping out of the study.

5-item self-reported measure assessing caregivers' confidence to use community-based services. The scale ranges on level of certainty from "not at all certain" to "very certain." The responses are scored on a scale of 0-10. These scores are summed up for a final score of 0-50, with a 50 being the highest knowledge of formal services. Questions include how certain the caregiver can get answers to all questions about services in the community, find organizations or agencies that provide services in need, arrange for services themselves, get answers to all questions about the individual's care, and get answers to changes in services due to the COVID-19 pandemic.

Outcome measures

Outcome measures
Measure
Options Counselor Health Educator Intervention Group
n=42 Participants
These individuals received the Options Counselor Health Educator (OC-HE) Intervention: The OC-HE met in person or over the telephone with the participant up to 6 times to provide options counseling based on modules developed by the research team.
Control
n=40 Participants
These individuals received the typical standard of care treatment from clinics
Caregiving Self-Efficacy
Baseline
29.524 score on a scale
Standard Deviation 12.814
31.775 score on a scale
Standard Deviation 10.666
Caregiving Self-Efficacy
3-month
35.345 score on a scale
Standard Deviation 12.995
34.600 score on a scale
Standard Deviation 10.528
Caregiving Self-Efficacy
6-month
33.667 score on a scale
Standard Deviation 13.157
33.481 score on a scale
Standard Deviation 7.992

Adverse Events

Options Counselor Health Educator Intervention Group

Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths

Control

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

Sato Ashida

University of Iowa

Phone: 319-384-1477

Results disclosure agreements

  • Principal investigator is a sponsor employee
  • Publication restrictions are in place