Trial Outcomes & Findings for Twitter Based Social Support for Hispanic and Black Dementia Caregivers (NCT NCT03865498)
NCT ID: NCT03865498
Last Updated: 2025-01-15
Results Overview
Macro level: The number of participants who do not engage in Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers
Recruitment status
COMPLETED
Study phase
NA
Target enrollment
966 participants
Primary outcome timeframe
12 months
Results posted on
2025-01-15
Participant Flow
Participants were recruited based on flyer distribution via community outreach offline (10 brain and Alzheimer's disease community events, community outreach) and online (Twitter advertisement, emails to 920+ community leaders) between January 2022 and June 2023. The first participant was enrolled on January 12, 2022, and the last was enrolled on June 14, 2023.
Participant milestones
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
Participants in the African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Message ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
Participants in the Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Message ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
|---|---|---|
|
Overall Study
STARTED
|
506
|
460
|
|
Overall Study
Per Protocol 6m (186 Days)
|
463
|
400
|
|
Overall Study
Per Protocol 9m (274 Days)
|
435
|
352
|
|
Overall Study
Per Protocol 12m
|
359
|
291
|
|
Overall Study
COMPLETED
|
367
|
312
|
|
Overall Study
NOT COMPLETED
|
139
|
148
|
Reasons for withdrawal
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
Participants in the African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Message ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
Participants in the Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Message ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
|---|---|---|
|
Overall Study
Lack of Efficacy
|
12
|
11
|
|
Overall Study
Lost to Follow-up
|
125
|
133
|
|
Overall Study
Withdrawal by Subject
|
2
|
4
|
Baseline Characteristics
Twitter Based Social Support for Hispanic and Black Dementia Caregivers
Baseline characteristics by cohort
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
n=506 Participants
African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
n=460 Participants
Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Total
n=966 Participants
Total of all reporting groups
|
|---|---|---|---|
|
Age, Continuous
|
46.7 years
STANDARD_DEVIATION 15.6 • n=5 Participants
|
49.1 years
STANDARD_DEVIATION 15.6 • n=7 Participants
|
47.9 years
STANDARD_DEVIATION 15.7 • n=5 Participants
|
|
Sex/Gender, Customized
Female
|
333 Participants
n=5 Participants
|
313 Participants
n=7 Participants
|
646 Participants
n=5 Participants
|
|
Sex/Gender, Customized
Male
|
172 Participants
n=5 Participants
|
145 Participants
n=7 Participants
|
317 Participants
n=5 Participants
|
|
Sex/Gender, Customized
Prefer not to answer
|
1 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
3 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Hispanic or Latino
|
247 Participants
n=5 Participants
|
460 Participants
n=7 Participants
|
707 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Not Hispanic or Latino
|
255 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
255 Participants
n=5 Participants
|
|
Ethnicity (NIH/OMB)
Unknown or Not Reported
|
4 Participants
n=5 Participants
|
0 Participants
n=7 Participants
|
4 Participants
n=5 Participants
|
|
Race (NIH/OMB)
American Indian or Alaska Native
|
0 Participants
n=5 Participants
|
18 Participants
n=7 Participants
|
18 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Asian
|
0 Participants
n=5 Participants
|
3 Participants
n=7 Participants
|
3 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
|
399 Participants
n=5 Participants
|
57 Participants
n=7 Participants
|
456 Participants
n=5 Participants
|
|
Race (NIH/OMB)
White
|
0 Participants
n=5 Participants
|
63 Participants
n=7 Participants
|
63 Participants
n=5 Participants
|
|
Race (NIH/OMB)
More than one race
|
107 Participants
n=5 Participants
|
317 Participants
n=7 Participants
|
424 Participants
n=5 Participants
|
|
Race (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=5 Participants
|
2 Participants
n=7 Participants
|
2 Participants
n=5 Participants
|
|
Region of Enrollment
United States
|
506 participants
n=5 Participants
|
460 participants
n=7 Participants
|
966 participants
n=5 Participants
|
|
Number of participants who do not engage in Twitter activities
|
471 Participants
n=5 Participants
|
447 Participants
n=7 Participants
|
918 Participants
n=5 Participants
|
|
Emotional Valence Score
|
0.149 score on a scale
STANDARD_DEVIATION 1.054 • n=5 Participants
|
0.073 score on a scale
STANDARD_DEVIATION 0.713 • n=7 Participants
|
0.113 score on a scale
STANDARD_DEVIATION 0.908 • n=5 Participants
|
PRIMARY outcome
Timeframe: 12 monthsMacro level: The number of participants who do not engage in Twitter activities (i.e., retweet, reply, like, post) within the Twitter network for dementia caregivers
Outcome measures
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
n=506 Participants
African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
n=460 Participants
Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
|---|---|---|
|
Number of Participants Who do Not Engage in Twitter Activities
|
246 Participants
|
226 Participants
|
PRIMARY outcome
Timeframe: 12 monthsEmotional valence (macro level) detected from text data (e.g., "This is so helpful": emotion score +4; "I am sad": emotion score -6). Emotional valence score ranges from -10 to +10; -10 indicates negative valence and +10 indicates positive valence.
Outcome measures
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
n=506 Participants
African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
n=460 Participants
Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
|---|---|---|
|
Emotional Valence Score
|
1.404 score on a scale
Standard Deviation 2.412
|
1.483 score on a scale
Standard Deviation 2.229
|
SECONDARY outcome
Timeframe: 12 monthsMeso level: number of small group automatically detected based on Twitter activities (i.e., retweet); for example 0 means no small-group activity detected, 7 small groups mean seven distinct cliques/grouping activities detected where the users are communicating, supporting and responding within our Twitter network.
Outcome measures
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
n=506 Participants
African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
n=460 Participants
Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
|---|---|---|
|
Number of Auto-detected Small Groups
Pre
|
259 Auto-detected Small Groups
|
231 Auto-detected Small Groups
|
|
Number of Auto-detected Small Groups
Post
|
262 Auto-detected Small Groups
|
239 Auto-detected Small Groups
|
SECONDARY outcome
Timeframe: 12 monthsPopulation: Triad census: Counts of each triad type within a network are determined by analyzing all possible combinations of connections of 16 possible communication styles among three nodes (a triad) in each conversation.
Micro level: % balanced communication triad, 2 or 3 people responding and communicating with equal or similar frequency; 0 reflects non-optimal communication indicating domination, avoidance or ignorance. 8 means there are 8% triads who maintain healthy communication.
Outcome measures
| Measure |
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
n=6608580 Triads
African American caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to African American family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
n=4064785 Triads
Hispanic caregiving Twitter community received a multimedia Tweet message daily for 365 days and was asked to use (i.e., retweet, reply, like) our network community; Group message started on November 1, 2022 until October 31, 2023.
Ingredient: an evidence-based social support Tweet message tailored to Hispanic family members of persons with ADRD \[dosage: 1 group message, dosage form: video and text, frequency: 1 group message daily, administration duration: a short video 20-50 seconds, a group message length 280 characters reading time 3 seconds\]
|
|---|---|---|
|
Percentage of Balanced Triads
Pre
|
0.00 percentage of balanced triads
|
0.00 percentage of balanced triads
|
|
Percentage of Balanced Triads
Post
|
0.21 percentage of balanced triads
|
0.34 percentage of balanced triads
|
Adverse Events
African American Family Members of Persons With Alzheimer's Disease and Related Dementias
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Hispanic Family Members of Persons With Alzheimer's Disease and Related Dementias
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
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place