June 22, 2020

African-Americans are more likely to develop lupus than Caucasians, but less likely to take part in clinical trials of the disease. However, a new study showed that several simple steps, such as providing transportation and flexible scheduling, may allow more African-Americans to participate in trials. The study was conducted by top lupus experts including Dr. S. Sam Lim of Emory University School of Medicine who serves on the Steering Committee for the Lupus Clinical Investigators Network (LuCIN) managed by Lupus Therapeutics, an affiliate of the Lupus Research Alliance..

Dr. Lim and colleagues are conducting a five-year study, Women Empowered to Live with Lupus (WELL), in Atlanta to see if a group self-management program is helpful for patients. The program involves six classes for African-American women to learn about dealing with pain and fatigue, managing medications, eating a healthy diet, and other approaches for coping with the disease. Participants must attend at least four meetings to complete the program.

Historically, recruiting and retaining African-Americans in trials has been difficult. In the first six months of the study, 65% of the women completed the program, below the national average of 75% for similar programs. In talking with those who took part, the researchers found a number of obstacles that had made it hard to attend and so changed the study’s procedures to lessen these barriers.

For instance, weekday morning sessions were often hard for women who had full-time jobs, medical appointments, or childcare obligations, so the researchers offered afternoon and Saturday sessions as well. Dr. Lim and colleagues also increased the number of class sites, adding locations that were more convenient and familiar for the participants. To help the women keep attending, the team sent reminders the day before classes and a small gift to those who finished the third meeting. Because transportation to the sessions was also a stumbling block, researchers offered more options, including Uber or Lyft rides and subway cards.

Dr. Lim and his colleagues found that their efforts paid off. In the second six months of the trial, 80% of the women finished at least four classes, and the overall completion rate was 75%. Similar strategies could help retain African-American patients in other studies.

The researchers published their results this month in the journal Lupus Science and Medicine.