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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.

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).

SUBMITTER: Ssewamala FM

PROVIDER: S-EPMC6804585 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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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.

Ssewamala Fred M FM Sensoy Bahar Ozge O Johnson Kimberly J KJ Katumba Ruth G N RGN

Contemporary clinical trials communications 20191001

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 lo ...[more]

PMID: 31650077

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Project description:Uganda is among the first to use the Washington Group Short Set of Questions on Disability to identify persons with disabilities in its Demographic and Health Survey. In this paper, we review the HIV Knowledge, Attitudes and Behaviour component of the 2011 Ugandan Demographic and Health Survey, analysing a series of questions comparing those with and without disabilities in relation to HIV/AIDS knowledge, attitudes and practices. We found comparable levels of knowledge on HIV/AIDS for those with and those without disabilities in relation to HIV transmission during delivery (93.89%, 93.26%) and through breastfeeding (89.91%, 90.63%), which may reflect increased attention to reaching the community of persons with disabilities. However, several gaps in the knowledge base of persons with disabilities stood out, including misconceptions of risk of HIV infection through mosquito bites and caring for a relative with HIV in own household (34.39%, 29.86%; p<0.001; 91.53%, 89.00%; p = 0.001, respectively). The issue is not just access to appropriate information but also equitable access to HIV/AIDS services and support. Here we found that persons with multiple disabilities were less likely than individuals without disabilities to return to receive results from their most recent HIV test (0.60[0.41-0.87], p<0.05). HIV testing means little if people do not return for follow-up to know their HIV status and, if necessary, to be connected to available services and supports. Additional findings of note were that persons with disabilities reported having a first sexual encounter at a slightly younger age than peers without disabilities; and persons with disabilities also reported having a sexually transmitted disease (STD) within the last 12 months at significantly higher rates than peers without disabilities (1.38[1.18-1.63], p<0.01), despite reporting comparable knowledge of the need for safer sex practices. This analysis is among the first to use HIV/AIDS-related questions from Demographic Health Surveys to provide information about persons with disabilities in Uganda in comparison to those without disabilities. These findings present a more complex and nuanced understanding of persons with disabilities and HIV/AIDS. If persons with disabilities are becoming sexually active earlier, are more likely to have an STD within the preceding 12 month period and are less likely to receive HIV test results, it is important to understand why. Recommendations are also made for the inclusion of disability measures in Uganda's AIDS Indicator Survey to provide cyclical and systematic data on disability and HIV/AIDS, including HIV prevalence amongst persons with disabilities.

Project description:BackgroundPeople living with HIV often struggle with mental health comorbidities that lower their antiretroviral therapy (ART) adherence. There is growing evidence that depression treatment may improve ART adherence and result in improved HIV outcomes. Given that mental health services are severely underequipped in low-resource settings, including in Uganda, new solutions to increase access to mental health care and close the treatment gap are urgently needed. This protocol paper presents the Suubi-Mhealth study, which proposed to develop a mobile health (mHealth) intervention for use among Ugandan youths (14-17 years) with comorbid HIV and depression, taking into account their unique contextual, cultural, and developmental needs.ObjectiveThe proposed study is guided by the following objectives: (1) to develop and iteratively refine an intervention protocol for Suubi-Mhealth based on formative work to understand the needs of youths living with HIV; (2) to explore the feasibility and acceptability of Suubi-Mhealth on a small scale to inform subsequent refinement; (3) to test the preliminary impact of Suubi-Mhealth versus a waitlist control group on youths' outcomes, including depression and treatment adherence; and (4) to examine barriers and facilitators for integrating Suubi-Mhealth into health care settings.MethodsYouths will be eligible to participate in the study if they are (1) 14-17 years of age, (2) HIV-positive and aware of their status, (3) receiving care and ART from one of the participating clinics, and (4) living within a family. The study will be conducted in 2 phases. In phase 1, we will conduct focus group discussions with youths and health care providers, for feedback on the proposed intervention content and methods, and explore the feasibility and acceptability of the intervention. In phase II, we will pilot-test the preliminary impact of the intervention on reducing depression and improving ART adherence. Assessments will be conducted at baseline, 1-, 2-, and 6-months post intervention completion.ResultsParticipant recruitment for phase 1 is completed. Youths and health care providers participated in focus group discussions to share their feedback on the proposed Suubi-Mhealth intervention content, methods, design, and format. Transcription and translation of focus group discussions have been completed. The team is currently developing Suubi-Mhealth content based on participants' feedback.ConclusionsThis study will lay important groundwork for several initiatives at the intersection of digital therapeutics, HIV treatment, and mental health, especially among sub-Saharan African youths, as they transition through adolescence and into adult HIV care settings.Trial registrationClinicalTrials.gov NCT05965245; https://clinicaltrials.gov/study/NCT05965245.International registered report identifier (irrid)DERR1-10.2196/54635.

Dataset Information

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.

Publications

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.

Similar Datasets

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