Would people living with HIV be willing to self-report on daily substance use and antiretroviral therapy (ART) adherence using a smartphone app?
That was a question researchers from the University at Buffalo set out to answer in a recent study. They were pleased to find that participants not only found the app easy and convenient to use, but they were also willing to provide honest responses.
“Reporting was actually high — we had 95 percent compliance with daily report completion. A key finding of our study was the ability for people living with HIV to feel comfortable reporting on sensitive health behaviors,” said Sarahmona Przybyla, the study’s lead author and clinical assistant professor of community health and health behavior in UB’s School of Public Health and Health Professions.
A willingness to report the use of alcohol or drugs was significant because substance use is one of the most reliable predictors of poor adherence to ART, the researchers note.
Participants were recruited from two Buffalo-area clinics and were asked to use the app — named Daily Reports of Using Medications, or DRUM — to complete their reports, which took three to five minutes, between 4 p.m. and 6 p.m. each day for two weeks.
Every afternoon, the 26 study participants received a text message reminder asking them to fill out their report. If they missed that day’s report, they were given the option to do a make-up when they logged into the app the next day.
Researchers were deliberate in their wording of the questions. “People living with HIV continue to be a stigmatized population, so we didn’t want any of the questions we developed to draw attention to their disease. We never used ‘HIV’ or ‘ART’ — anything that would inadvertently out someone as having HIV,” Przybyla said.
A sample medication question was, “Did you take your first dose?” A change in daily routine was the most commonly reported reason participants didn’t take their medication, followed by simply forgetting. Use of alcohol or drugs was the third most common reason.
Participants who confirmed they had used alcohol or drugs in the past 24 hours were given a series of follow-up questions that asked why they used the substance and where they were when they used it, with a dropdown menu of answer choices.
Each participant was provided with a five-digit passcode to access the app, ensuring privacy and confidentiality. Data from the completed reports was sent in real time directly to UB’s Research Institute on Addictions, which helped develop the app along with Przybyla.
In the future, the app could aid in users’ decision to use alcohol since some participants in this study reported that it helped them understand exactly how much they were drinking.
Participants completed 347 out of 364 possible daily reports over the two-week span. They reported drinking alcohol on 51.6 percent and marijuana use on 35.4 percent of reporting days.
In follow-up interviews after the two weeks, researchers asked study members about their experience using the app. “Many said it was a piece of cake and that they actually looked forward to doing their daily reports,” Przybyla said. “We also asked people where they were when they completed their reports. A lot of them said they were out and about. They never felt like they had to go hide in a bathroom to fill out the survey each day.”
Przybyla said it’s important to note that the average time since diagnosis among study participants was 17 years and that many of their friends and relatives were likely aware they had HIV. As a result, participants probably felt more comfortable completing the reports around others than someone who was more recently diagnosed and may not have been open about disclosing their disease status to others.
Three-quarters of the sample was male, and slightly more than half were African American. The average age was 48.
The app could help lead to quicker intervention in cases where a patient has missed a number of doses.
