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

Fred M Ssewamala, Ozge Sensoy Bahar, Kimberly J Johnson, Ruth G N Katumba, Fred M Ssewamala, Ozge Sensoy Bahar, Kimberly J Johnson, Ruth G N Katumba

Abstract

Youth Living with HIV (YLWHIV) are at high risk for cancer. Sub-Saharan Africa (SSA) has some of the worst pediatric cancer survival rates due to barriers to accessing cancer services and treatment adherence. This protocol describes a study that aims at: 1) Identifying confirmed and suspected cancer cases in a cohort of >3000 HIV positive youth; 2) Examining the short-term preliminary outcomes of an evidence-based Economic Empowerment (EE) intervention, Suubi ("hope" in a local Ugandan language), on access to pediatric cancer diagnosis and care, and treatment adherence among YLWHIV with suspected cancers in Uganda; and 3) Exploring multi-level factors impacting intervention participation and experiences. The proposed Suubi4Cancer intervention combines savings-led EE through family development accounts (FDA) with financial literacy and management (FLM) and cancer education (CE). The study will review medical charts in 39 clinics in Southwest Uganda to identify confirmed and suspected cancer cases. Subsequently, Suubi4Cancer will be evaluated via a randomized-controlled trial design (FDA + FLM + CE versus Usual Care) targeting a total of 78 youth ages 10-to-24 and their caregivers. Assessments at baseline and 9 months will examine change in cancer treatment access; cancer treatment adherence; and knowledge, attitudes, and beliefs about cancer and cancer treatment. Semi-structured interviews with the intervention group will explore their intervention experiences. To our knowledge, Suubi4Cancer will be the first study to test the preliminary impact and acceptability of a combination intervention to increase access to cancer diagnosis and treatment services for YLWHIV.

Trial registration: Clinical Trials NCT03916783 (Registered: 04/16/19).

Keywords: Access to treatment services; Children and youth; Economic empowerment; HIV/AIDS; Pediatric cancer; Sub-saharan africa.

© 2019 The Author(s).

Figures

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Fig. 1
Impacting long-term change among HIV positive youth with a potential cancer diagnosis.

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