February 10, 2015

The CATCH Study Focuses on the Children Who Miss Diagnosis

The Kenya Pediatric Studies (KPS) team has been working hard on an important study called CATCH (Counseling and Testing for Children at Home). The CATCH study does just what the name says by “catching” children ages 12 and under who have fallen through the cracks in HIV diagnosis systems.

There are 3.3 million children in the world living with HIV.  Half of HIV-infected children that go untreated will die by the age of two. There are some great programs in place to help prevent mother-to-child transmission (PMTCT) during pregnancy, birth, and breastfeeding; but going through all the steps in these systems can be challenging, and medication is not always successful at preventing infection in babies.

Children born before PMTCT systems were widely available may not have had the chance to be tested. Additionally, if a mother finds out that she has HIV after her child has been born, there may be a missed opportunity to test her child. Many HIV-infected young children with a missed diagnosis are admitted to the hospital when they are already very sick and they don’t respond well to HIV treatment.  The CATCH team aims to find children who may have missed diagnosis in PMTCT and get them the care they need before it’s too late.

CATCH is working to bridge the gap by approaching parents already in treatment and asking if they have any children who have not been tested and would like to have these children tested. CATCH offers testing both in clinics and at the home for those parents who prefer not to bring their children to the clinic. HIV-infected children are then linked to an HIV care clinic of choice, which ensures that children can live happy and healthy lives because of much needed care.

One issue that the CATCH team has run into is the issue of disclosure of HIV status to children. “Telling a child they have HIV is hard because you’re also potentially exposing the parents’ status as well. Kids also have a difficult time processing the news and will sometimes talk with friends, which can lead to possible stigma for the family,” says Anjuli Wagner, a PhD candidate in the Department of Epidemiology and member of the CATCH study team. Still, studies suggest that disclosure does seem to improve outcomes for infected children.

The CATCH study originally intended to focus on all children ages 0-18, but they discovered through discussions with bioethicists and their community advisory board that adolescents have a unique set of needs that are quite different from those of younger children. With adolescents, it’s challenging to decide who can give permission for the HIV test, who should receive the results of the test, and how best to support  a young person who is gaining independence to cope with their diagnosis. To address these challenges inherent in adolescent HIV testing, another study called ‘DASH’ was created. DASH (Developing Adolescent Strategies for HIV testing) is focusing on voluntary counseling and testing for adolescents and is just another way the Kenya Pediatric Studies and Global WACh teams are making sure all the bases are covered for appropriate testing and treatment for children and adolescents.

CATCH currently has funding for 7 different sites in Nairobi and one in Western Kenya and we’re looking forward to seeing those results!