We’re happy to have Dr. Rachel Vreeman join us for a Member Spotlight next week from April 9th to the 13th.
Dr. Vreeman is an Assistant Professor of Pediatrics at the Indiana University School of Medicine. She is also the Co-Director of Pediatric Research for AMPATH, a partnership between the Indiana University School of Medicine and Moi University School of Medicine in Kenya. AMPATH was started in 2001 to combat the HIV epidemic in western Kenya and currently provides comprehensive care for over 130,000 HIV-infected adults and children through 25 clinics and 40 satellite clinics across Kenya.
Dr. Vreeman was kind enough to answer a few of my initial questions below, and has expanded on some of her responses in a video which can be viewed at the attached link. She looks forward to questions from the community about pediatric adherence, and hopes to hear suggestions on monitoring adherence for pediatric and adolescence populations, and how care systems can best implement disclosure for children.
Tell us about your work in this space, when did you first become interested in pediatric adherence and retention and how did you come to work with AMPATH?
As a pediatrician and a health services researcher, my big interest is how we can best provide high-quality care for children within clinical systems with very limited resources. When I started working with AMPATH and with the Indiana University School of Medicine in 2006, it was very clear in our clinical system that adherence was one of our biggest, long-term challenges. Every clinician I spoke with and every family I saw in clinic wrestled with the complicated task of having children take the HIV medicines every day for the rest of their lives and what this looked like in place like Kenya.
What do you see as the biggest barriers in pediatric adherence?
While many families struggle with every day challenges such as forgetting to give the medicines when they are busy, missing a dose because the parent is away from the child and working, or a child not wanting to take the medicines because they have grown tired of taking medicines that they are taking for reasons they do not understand, the biggest barriers underlying pediatric adherence are the much deep ones of disclosure and stigma. Parents are very hesitant to tell any other people about their child’s medicines or to enlist the help of others in caring for the children because they fear stigma and discrimination. This often creates barriers to adherence where they delay doses because others are in the home or they do not have anyone to help give the child the medicines when the primary caretaker is away. The fear of stigma also creates a deep culture of secrecy and isolation for the family. In addition to disclosure to other people, not disclosing HIV status to children is another huge barrier to pediatric adherence.
What role does disclosure play in pediatric adherence? How have you see families in Kenya approach this issue?
Disclosure plays a critical role for pediatric adherence as children age. As HIV-infected children reach adulthood, they need to be informed of their HIV status. Disclosure is central to transition children into self-care, maintain medication adherence, prevent HIV transmission, and deal with the psychosocial implications of HIV infection. The collected research from both resource-limited settings and resource-rich settings suggests that disclosure to children ultimately improves their ART adherence.
Families in Kenya are typically very reluctant to disclose HIV status to children, even children who are 13 or 14-years old and have primary responsibility for taking their own medications. Families fear that children will tell others about their HIV status, resulting in discrimination for the family. They also fear that disclosure will cause make the children depressed or cause them to lose hope. Nonetheless, families typically recognize that disclosure may improve adherence, and we have found that they appreciate a gradual process of disclosure with a lot of support from the clinic.
Reducing the number of patients lost to follow up (LTFU) has been a frequent topic of discussion in our community - are there strategies you've found particularly effective at addressing LTFU in pediatric settings?
Our program in Kenya struggles with LTFU, especially among HIV-exposed children for whom we are trying to provide PMTCT care and ongoing monitoring. For both HIV-exposed and HIV-infected children, disclosure and stigma also play an important role in understanding LTFU. In our evaluations, we have found many children become LTFU when a caregiver dies and no other responsible adults know about their need for HIV treatment or when the fear of stigma becomes too much for the family to overcome and they can no longer maintain their HIV care. Individual case management, with active patient follow-up after missed appointments using both phone contact and home visits, seems to be crucial to re-connecting families to the clinic, dispelling false beliefs about what treatment may or may not be needed, and overcoming the challenges of not having the financial, emotional, or social resources to remain in clinical care.
What are the most exciting developments in pediatric adherence you’ve come across recently?
I love thinking about the ways that technology can undergird our measurement and improvement of pediatric adherence. Appropriate technologies may be able to assist us in our need to provide individualized case management for children on ART. Things like real-time monitoring of dosing; tailored, automated reminders for clinical care; and mobile technologies to measure and prompt patients to improve adherence are all important for us to continue to evaluate. And affordable alternatives to the existing technologies would be really great for resource-limited settings!