In January 2019, Elizabeth Lowenthal, MD, will travel to Botswana, the sub-Saharan African country where she lived and worked for years before joining Children’s Hospital of Philadelphia, to meet with a unique team of collaborators united by a single mission: Better understand and address the cognitive and neurodevelopmental impairments observed more commonly in youth living with human immunodeficiency virus (HIV). In order to support these youth, Dr. Lowenthal will co-lead the research project alongside J Cobb Scott, PhD, an Associate Professor of Clinical Psychology at Penn, with a multidisciplinary team that harnesses the expertise of the Neuropsychiatry section at Perelman School of Medicine and the Botswana-Baylor Children’s Clinical Centre of Excellence.
Despite its high rates of perinatal exposure to HIV, Botswana currently has limited neurocognitive assessment tools and expertise, according to Dr. Lowenthal, who is the Research Director for CHOP’s Global Health Center. Botswana has just a single educational psychologist in the public sector with the skills needed to identify, support, and advocate for these youth. With that psychologist’s waiting list often numbering in the thousands, Dr. Lowenthal hopes that her latest research project, funded by the National Institutes of Health, will give health clinics and schools in Botswana the tools they need to better detect which children and adolescents have neurocognitive issues early on to help identify the appropriate supports.
“People living with HIV, particularly those who were diagnosed late, and who have poorly controlled HIV, can often have deficits in certain aspects of their ability to function,” said Dr. Lowenthal. “They’re often subtle, things like attention problems and problems with what we call executive function. For some people, it’s not a major issue, but what we’ve seen with kids who’ve grown up with HIV — especially in limited resource-settings — is that a lot of them end up not succeeding in school because their disorder, whether they’re mild or moderate or severe, went unrecognized and unsupported.”
“In all of the projects that we’re taking on through CHOP Global Health, we aim to identify the challenges in resource-limited settings where we have some strengths here at CHOP,” Dr. Lowenthal said.
Validating Culturally-Adapted and Feasible Tools for Limited Resource Settings
When Dr. Lowenthal moved to Botswana in 2004 as clinic director for the Botswana-Baylor Children’s Clinical Centre of Excellence, she got to know, and eventually love, a population of patients who grew into healthy, vibrant young children over the course of a few years. But despite receiving treatment for HIV, these children often had unrecognized problems with their ability to learn and function. When they had to pass tests to continue their education in secondary school, the students often weren’t prepared.
The impact of these setbacks can be devastating: “We see a lot of kids who do very well on their HIV treatment and really have the potential to live to be as old as their non-HIV-infected peers, but who kind of give up on taking their medications because they feel like they don’t have things to live for,” Dr. Lowenthal said. “They can’t move forward in school and can’t get a job and don’t really have skills.”
Through the new grant, Dr. Lowenthal and her team are assessing the impact of a set of tools designed to detect neurodevelopmental problems and deficits: the Penn Computerized Neurocognitive Battery (CNB) and the Pediatric Symptoms Checklist (PCS).
Designed by Ruben Gur, PhD, director of the Brain Behavior Laboratory at Penn, and his team, the CNB is a series of neurocognitive tests that assess all major domains of cognitive functioning in adults and children as young as five. The CNB, already well-validated in the United States, has been translated into 15 different languages and adapted for a number of different cultures. With the help of colleagues in Botswana, Dr. Lowenthal’s team has begun to adapt the CNB to Botswana culture. They will then administer that version of the CNB to 200 children infected by HIV, 200 children exposed to HIV in utero but uninfected, and 240 children not exposed or infected by HIV in Botswana, followed by a series of analyses to examine the battery’s reliability in those populations.
Expanding Access to Neurocognitive Testing
Dr. Lowenthal believes that the CNB holds promise for clinics in Botswana by bringing assessments closer to the care seen in better-resourced settings. Currently, an educational psychologist in Botswana can only test a few children each day. In contrast, patients in the pediatric HIV clinic at CHOP are tested as often as every year by a clinical neuropsychologist. Almost every child growing up with HIV in the Philadelphia area has access to a professional who could spend hours with them to truly understand their strengths and weaknesses and identify the most appropriate school supports.
“What the CNB does is it allows you to understand a lot of what you would get from that comprehensive professionally done testing with automated scoring, and it can be administered by people who don’t have very high levels of training,” Dr. Lowenthal said.
Furthermore, use of the CNB may have the added benefit of helping to understand more intricate brain behavior: Dr. Gur’s team at Penn has conducted work comparing scores on the CNB with functional neuroimaging, essentially allowing them to understand what certain patterns on the CNB might mean when it comes to which areas of a child’s brain are not functioning optimally.
But while it would be ideal to have every child in a limited-resource setting assessed with the CNB, Dr. Lowenthal says a one-hour cognitive evaluation for every child might not be feasible in busy clinics. Thus, the team is also adapting the Pediatric Symptom Checklist, a brief screening instrument with a more limited job of helping clinicians prioritize which children are more likely to benefit from further cognitive assessments. Unlike the CNB, the PSC has previously been validated for use in Botswana.
“The idea for this grant is that perhaps there are some questions on the PSC that would be much more likely to be answered in the way that would indicate a potential problem among kids who end up having abnormal scores on the CNB,” Dr. Lowenthal said. “And that further, once we look at the kids with abnormalities on the CNB and talk with their caregivers, we might identify additional questions that would help us to make a revised version of the PSC that can be used when we can’t get the CNB to everybody.”
With January coming up soon, much of the legwork involved in adapting the CNB — including translating the tests’ texts — has been completed by collaborators in Botswana prior to Dr. Lowenthal and her team’s arrival.
“When we travel in January, we’re going to have a room full of people who come from a variety of areas within Botswana, including people in the Ministry of Education, some clinical psychologists, some adolescents themselves, who are going to come together and go through the materials with us and help us make sure we’re capturing the subtleties of differences within the culture,” Dr. Lowenthal said.
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