Trial Outcomes & Findings for Peer Approaches to Lupus Self-management (NCT NCT03734055)

NCT ID: NCT03734055

Last Updated: 2025-08-20

Results Overview

Quality of life will be assessed by using The LUP-QOL (Lupus Quality of Life Questionnaire), which assesses areas of the participant's life that may be affected by lupus. The score ranges from 0-100. A score of '0' indicates the lowest quality of life, and a score of 100 indicates the best quality of life. The 'Overall Impact' field reported has a scale of 0-700. Higher values represent a better outcome.

Recruitment status

ACTIVE_NOT_RECRUITING

Study phase

NA

Target enrollment

314 participants

Primary outcome timeframe

Baseline to 12 months post-intervention

Results posted on

2025-08-20

Participant Flow

Participant milestones

Participant milestones
Measure
Peer Mentoring
The program will consist of 12 sessions of peer mentoring that will include one standard educational session by telephone or video for approximately 60 minutes every 2 weeks. Additional interaction will be discouraged, but mentees and mentors will be asked to report any additional social interaction should it occur. The bi-weekly educational session will be generally structured in three parts: introduction, structured education, and problem solving. 60-minute calls are necessary for the delivery of educational content and mentors and mentees to be able to discuss their own experiences and potential solutions. Peer Mentoring: Manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management.
Social Support Group
Mentees randomized to the social support control group will be enrolled in a lupus support group designed specifically for this project. Social Support Group: Social support controls will participate in a lupus support group created for this project, on the same schedule as peer mentoring sessions.
Overall Study
STARTED
182
132
Overall Study
Mentors
44
0
Overall Study
Mentees
138
132
Overall Study
COMPLETED
161
129
Overall Study
NOT COMPLETED
21
3

Reasons for withdrawal

Withdrawal data not reported

Baseline Characteristics

Peer Approaches to Lupus Self-management

Baseline characteristics by cohort

Baseline characteristics by cohort
Measure
Peer Mentoring
n=138 Participants
The program will consist of 12 sessions of peer mentoring that will include one standard educational session by telephone or video for approximately 60 minutes every 2 weeks. Additional interaction will be discouraged, but mentees and mentors will be asked to report any additional social interaction should it occur. The bi-weekly educational session will be generally structured in three parts: introduction, structured education, and problem solving. 60-minute calls are necessary for the delivery of educational content and mentors and mentees to be able to discuss their own experiences and potential solutions. Peer Mentoring: Manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management.
Social Support Group
n=132 Participants
Mentees randomized to the social support control group will be enrolled in a lupus support group designed specifically for this project. Social Support Group: Social support controls will participate in a lupus support group created for this project, on the same schedule as peer mentoring sessions.
Mentors
n=44 Participants
Peer mentors administered the peer mentoring intervention and were not involved in social support groups.
Total
n=314 Participants
Total of all reporting groups
Age, Continuous
45 years
STANDARD_DEVIATION 2.82 • n=99 Participants
48 years
STANDARD_DEVIATION 2.82 • n=107 Participants
49 years
STANDARD_DEVIATION 2.82 • n=206 Participants
47 years
STANDARD_DEVIATION 2.82 • n=7 Participants
Sex: Female, Male
Female
138 Participants
n=99 Participants
132 Participants
n=107 Participants
44 Participants
n=206 Participants
314 Participants
n=7 Participants
Sex: Female, Male
Male
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Ethnicity (NIH/OMB)
Hispanic or Latino
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Ethnicity (NIH/OMB)
Not Hispanic or Latino
138 Participants
n=99 Participants
132 Participants
n=107 Participants
44 Participants
n=206 Participants
314 Participants
n=7 Participants
Ethnicity (NIH/OMB)
Unknown or Not Reported
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Race (NIH/OMB)
American Indian or Alaska Native
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Race (NIH/OMB)
Asian
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Race (NIH/OMB)
Black or African American
138 Participants
n=99 Participants
132 Participants
n=107 Participants
44 Participants
n=206 Participants
314 Participants
n=7 Participants
Race (NIH/OMB)
White
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Race (NIH/OMB)
More than one race
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Race (NIH/OMB)
Unknown or Not Reported
0 Participants
n=99 Participants
0 Participants
n=107 Participants
0 Participants
n=206 Participants
0 Participants
n=7 Participants
Region of Enrollment
United States
138 participants
n=99 Participants
132 participants
n=107 Participants
44 participants
n=206 Participants
314 participants
n=7 Participants

PRIMARY outcome

Timeframe: Baseline to 12 months post-intervention

Quality of life will be assessed by using The LUP-QOL (Lupus Quality of Life Questionnaire), which assesses areas of the participant's life that may be affected by lupus. The score ranges from 0-100. A score of '0' indicates the lowest quality of life, and a score of 100 indicates the best quality of life. The 'Overall Impact' field reported has a scale of 0-700. Higher values represent a better outcome.

Outcome measures

Outcome measures
Measure
Peer Mentoring
n=122 Participants
The program will consist of 12 sessions of peer mentoring that will include one standard educational session by telephone or video for approximately 60 minutes every 2 weeks. Additional interaction will be discouraged, but mentees and mentors will be asked to report any additional social interaction should it occur. The bi-weekly educational session will be generally structured in three parts: introduction, structured education, and problem solving. 60-minute calls are necessary for the delivery of educational content and mentors and mentees to be able to discuss their own experiences and potential solutions. Peer Mentoring: Manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management.
Social Support Group
n=129 Participants
Mentees randomized to the social support control group will be enrolled in a lupus support group designed specifically for this project. Social Support Group: Social support controls will participate in a lupus support group created for this project, on the same schedule as peer mentoring sessions.
Satisfaction in Quality of Life as Assessed by the LUP-QOL (Lupus Quality of Life Questionnaire
330.50 units on a scale
Standard Error 15.76
332.34 units on a scale
Standard Error 15.75

PRIMARY outcome

Timeframe: Baseline to 12 months post-intervention

The Patient Activation Measure (PAM) assesses an individual's knowledge, skill, and confidence for managing their health and healthcare. Individuals who measure high on this assessment typically understand the importance of taking a proactive role in managing their health and have the skills and confidence to do so. The PAM survey measures patients on a 0-100 scale and can segment patients into one of four activation levels along an empirically derived continuum, including "Believes Active Role Important", "Confidence and Knowledge to Take Action", "Taking Action", and "Staying Course Under Stress". Each activation level reveals insight into an array of health-related characteristics, including attitudes, motivators, behaviors, and outcomes. A high score represents a better outcome.

Outcome measures

Outcome measures
Measure
Peer Mentoring
n=122 Participants
The program will consist of 12 sessions of peer mentoring that will include one standard educational session by telephone or video for approximately 60 minutes every 2 weeks. Additional interaction will be discouraged, but mentees and mentors will be asked to report any additional social interaction should it occur. The bi-weekly educational session will be generally structured in three parts: introduction, structured education, and problem solving. 60-minute calls are necessary for the delivery of educational content and mentors and mentees to be able to discuss their own experiences and potential solutions. Peer Mentoring: Manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management.
Social Support Group
n=129 Participants
Mentees randomized to the social support control group will be enrolled in a lupus support group designed specifically for this project. Social Support Group: Social support controls will participate in a lupus support group created for this project, on the same schedule as peer mentoring sessions.
Change in Self-management
33.16 units on a scale
Standard Error 0.40
33.12 units on a scale
Standard Error 0.39

SECONDARY outcome

Timeframe: Baseline to 12 months post-intervention

To assess for differences in outcome expectancy, a modified treatment credibility scale developed by Borkovec and Nau (1972) will be used. Four of the questions will be used for this study, with 10-point Likert scales. These include questions regarding how logical the treatment seems, how confident participants are about treatment, and their expectancy of success

Outcome measures

Outcome data not reported

SECONDARY outcome

Timeframe: Baseline to 12 months post-intervention

Satisfaction with Care will be measured with a previously validated general scale to measure satisfaction/dissatisfaction with health care. The 2-item scale ranges from 1 (Strongly Agree) to 5 (Strongly Disagree).

Outcome measures

Outcome data not reported

SECONDARY outcome

Timeframe: Baseline to 12 months post-intervention

The Systemic Lupus Activity Questionnaire (SLAQ) asks a single Patient Global Assessment (PGA) question about presence and severity of lupus activity over the past month, questions on 24 specific symptoms of disease activity and a single Numerical Rating Scale (NRS) asking the patient to rate disease activity on a scale of 0-10 over the past three months. The reported patient global assessment has a scale of 0-3. A higher score represents a better outcome.

Outcome measures

Outcome measures
Measure
Peer Mentoring
n=122 Participants
The program will consist of 12 sessions of peer mentoring that will include one standard educational session by telephone or video for approximately 60 minutes every 2 weeks. Additional interaction will be discouraged, but mentees and mentors will be asked to report any additional social interaction should it occur. The bi-weekly educational session will be generally structured in three parts: introduction, structured education, and problem solving. 60-minute calls are necessary for the delivery of educational content and mentors and mentees to be able to discuss their own experiences and potential solutions. Peer Mentoring: Manualized peer mentorship program designed to provide modeling and reinforcement by peers (mentors) to other African American women with SLE (mentees) to encourage them to engage in activities that promote disease self-management.
Social Support Group
n=129 Participants
Mentees randomized to the social support control group will be enrolled in a lupus support group designed specifically for this project. Social Support Group: Social support controls will participate in a lupus support group created for this project, on the same schedule as peer mentoring sessions.
Disease Activity Measured by the Systemic Lupus Activity Questionnaire (SLAQ)
1.13 units on a scale
Standard Error 0.08
1.19 units on a scale
Standard Error 0.08

Adverse Events

Peer Mentoring

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

Social Support Group

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

Peer Mentoring: Peer Mentors

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

Dr. Edith Williams

University of Rochester

Phone: 5856020802

Results disclosure agreements

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