||5R21CA236531-02 Interpret this number
||SUUBI4CANCER: an Innovative Combination Intervention to Improve Access to Pediatric Cancer Services and Treatment Adherence Among Children Living with HIV/AIDS in Uganda
Worldwide, there are ~2.1 million HIV-infected children <15 years old with over 90% living in sub-Saharan
Africa (SSA). Cancer risk in youth living with HIV/AIDS (YLWHIV) is markedly increased relative to HIV
negative youth and pediatric cancer survival is low in SSA. Cancer studies in YLWHIV in SSA are rare with
only one large scale South African study reported to date. In Uganda, where this study will take place, there
are no prevalence data available for pediatric cancer among YLWHIV. In response to PAR-18-018, and in line
with the current HIV comorbidities priority area at the National Institutes of Health, the goal for the proposed
R21 study is to tailor and explore the short-term preliminary outcomes of an existing evidence-based Economic
Empowerment (EE) Intervention, Suubi (hope in Luganda -local Ugandan language), on access to pediatric
cancer diagnosis, care, and treatment adherence in CLWHIV with suspected cancers. The study will enhance
the Suubi EE intervention, titled Suubi4Cancer, through incorporation of cancer education addressing cultural
misconceptions regarding cancer tumors. In the proposed Suubi4Cancer study, we will test the theory that
youth and their families’ cognitive and behavioral change is influenced by economic stability. In addition, we will
examine if enhanced cancer knowledge through intra-familial support and communication will help maintain
positive behavioral health functioning and reinforce engagement in care and treatment. Suubi4Cancer will
leverage a 5-year NIH-funded R01 clinical trial of perinatally HIV-infected children in 39 Ugandan health clinics
to collect pilot data needed to explore acceptability and short-term preliminary outcomes of the enhanced
intervention. Using medical records (MRs), we will recruit at least 78 youth (ages 10-21) years with suspected
malignancies from ~3000 HIV+ youth receiving care in 39 clinics (~ 2 youth/clinic over a 6 month period). We
propose three specific aims: Aim 1. Identify confirmed and suspected cancer cases in a cohort of >3000 HIV+
youth (ages 10-21) seen at 39 clinics in 5 districts heavily affected by HIV/AIDS in southern Uganda; Aim 2.
Enhance the Suubi EE intervention by including a component addressing misconceptions regarding cancer
and explore the acceptability and preliminary impact of Suubi4Cancer on short-term outcomes; and Aim 3.
Explore multi-level factors (individual, family, cultural) impacting participants’ participation in and experiences
with the Suubi4Cancer. Our study findings will contribute to: 1) the initiation of a regional registry for YLWHIV
for cancer research; and 2) our understanding of the short-term impact of combination interventions addressing
access to cancer diagnosis, care, and treatment adherence among YLWHIV in SSA. The study will advance
knowledge about pediatric cancer in the context of HIV infection and will inform the design of an R01 study
allowing for better understanding of the role of combination interventions in addressing low pediatric cancer
survival rates in YLWHIV and potentially all youth in SSA.
Suubi4Cancer: A protocol for an innovative combination intervention to improve access to pediatric cancer services and treatment adherence among children living with HIV/AIDS in Uganda.
, Sensoy Bahar O.
, Johnson K.J.
, Katumba R.G.N.
Contemporary clinical trials communications, 2019 Dec; 16, p. 100459.