Helping Youth Transition to Adult Care

Every child born with HIV who has survived into young adulthood thanks to antiretroviral therapy (ART) will need to transition from pediatric care to adult care, but many face challenges during this important phase of life, and their health and well-being often suffer.

Launched in 2020, the Thai PAPAYA (Program to Actively follow Perinatal Adolescents and Young Adults living with HIV) study set out to characterize the medical and psychosocial needs of this popu­lation and the barriers to care they experience.

Co-led by Linda Aurpibul, MD, MPH, of the Research Institute for Health Sciences (RIHES) at Chiang Mai University, and Annette Sohn, MD, PhD, vice president and director of amfAR’s TREAT Asia program, the study documented long-term HIV treatment outcomes for Thai young adults aged 18–25.

Supported by a grant from ViiV Healthcare, the study also focused on mental health, sexual and reproductive health, behavioral outcomes, and risks of age-related non-communicable diseases, such as hypertension and diabetes. Study participants, who all had started ART during childhood, were recruited from five pediatric HIV clinics across Thailand.

Most who transitioned into adult care did so successfully, with 78% achieving suppression of their HIV virus, the study found. However, 7% died, many of them only a few years after the transition, and 88% of these deaths were AIDS-related. Dr. Aurpibul noted that those who died often shared similar stories: “being severely immunosuppressed at their last clinic follow-up, then lost to follow-up, then hospitalized due to opportunistic infection or passing away at home.”

To counter the high mortality rate, one thing became clear—the need for better support systems for the transition to adult care.

Support can mean pre-transition assessments and possibly deferring transition based on a low CD4 count, poor adherence, or the presence of co-morbidities, she explained. Or it can mean re-engaging youth who had stopped taking their medications and providing them with guidance to promote treatment adherence.

Support can also mean post-transition coordination among HIV providers. “More cooperation among pediatricians, adolescent medicine specialists, and adult doctors is needed to ensure continuing HIV care and proper management of other health conditions. We [also] need help from other experts for more complicated health issues,” said Dr. Aurpibul.

“Meanwhile, the existing consultation system with multiple visits or long waiting times might not be the answer for young people; a shortcut or one-stop service is required,” she added. “Some ad­olescents with HIV have neurocognitive problems superimposed on psychosocial issues—we cannot expect them to be like other adults with HIV. These young people have been struggling with HIV dis­closure since they were children, as well as having low self-advocacy while attending health services. Providers should better understand their circum­stances and limitations.”

The research team also recommends regular screening for alcohol use and mental health, including suicidality, to identify young adults with perinatally acquired HIV who might need more intensive psychosocial support or referral services to ensure they can achieve and maintain a high quality of life into adulthood.

Tracking young people after transition or relocation to other clinics is an essential practice.

“As many of those who are in their second or third decade of life today were orphaned after their biological parents passed away with AIDS, social support from healthcare providers is extremely important, as they might have no one else they can rely on in their lives,” Dr. Aurpibul shared.

“Transition to adult clinics should not be consider-ed as a one-time event, but a process that we need to follow. We have encouraged our colleagues and other providers in our network to do the same things…just a few words from someone who cares might change their life stories.”

Chael Needle is amfAR’s senior staff writer.

Click Here to read more from the May 2025 issue of amfAR INNOVATIONS.

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