For children born with HIV, adhering to medication gets harder with age

The study is one of the first to examine why different age groups stop adhering to treatment (nonadherence). While the factors related to nonadherence varied by age group, youth who were concerned about side effects of the drugs were less likely to be adherent at most ages.

"As they approach adulthood, many youth face challenges, such as entering new relationships, managing disclosure of their HIV status, and changing to an adult HIV care provider. Ensuring successful HIV medication adherence before and throughout adolescence is critical," said lead author Deborah Kacanek, research scientist in Harvard Chan School's Department of Biostatistics. "We found that the factors that either supported adherence and a suppressed (undetectable) viral load, or made it harder for youth to adhere to treatment, varied depending on their age."

The study was published online ahead of print in AIDS.

In the U.S., approximately 12,000 children, adolescents, and young adults are living with perinatally acquired HIV, meaning that they have lived with HIV since birth. Globally, 1.8 million adolescents live with HIV. Adhering to regimens of antiretroviral therapy (ART) is key to managing the disease and reducing the risk of transmission. Sticking to a daily regimen of medicine, however, is especially challenging for adolescents and young adults, who are navigating a range of physical, cognitive, social, and emotional changes.

Adherence can be more complicated for youth growing up with perinatal HIV, whose lifelong experiences with HIV, stigma, and multiple antiretroviral medications may pose challenges to achieving viral suppression that are different from youth who acquire HIV later in life.

To better understand these challenges and why young people may not adhere to their medications, researchers followed 381 youth with perinatally acquired HIV for an average of 3.3 years. The youth were participants in the Pediatric HIV/AIDS Cohort Study, which follows children and youth born with HIV or born exposed at birth to HIV to determine the impact of lifelong HIV and the long-term safety of antiretroviral regimens.

The preadolescents, adolescents, and young adults in the study ranged from age 8 to 22 and were recruited from 15 different clinical sites in the U.S, including Puerto Rico. As part of the study, the researchers examined results from blood tests that measured viral loads, and they examined nearly 1,200 adherence evaluations in which study participants or their caregivers self-reported any missed doses of medication in the prior seven days.

The researchers found that from preadolescence to young adulthood, the prevalence of nonadherence increased from 31% to 50%. In addition, the prevalence of detectable viral load among the same age groups increased from 16% to 40%.

For each age group, different factors were associated with nonadherence. For example, during middle adolescence (15-17 years old), alcohol use, having an unmarried caregiver, indirect exposure to violence, stigma, and stressful life events were all associated with nonadherence.

"It is important to talk with youth about how to take medications properly, but our study highlights the need for those who care for these youths to focus also on age-related factors that may influence adherence," Kacanek said. "Services to help support adherence need to address both the age-related risks and build on the sources of strength and resilience among youth at different stages of development."