Feasibility, and Acceptability of Decentralizing Sickle Cell Disease Care including Hydroxyurea at Health Centre Level 3 Facilities in remote rural area in Uganda
Study design
Observational cohort study
Objectives
This study aims to generate operational evidence on the feasibility and acceptability of decentralizing Sickle Cell Disease (SCD) care, and hydroxyurea (HU) treatment, to Health Centre Level 3 (HC3) and satellite facilities in Uganda. By documenting programmatic experiences, clinical outcomes, and stakeholder perspectives, the study will contribute to:
- Improving patient care by facilitating access to comprehensive SCD management including hydroxyurea closer to patients' homes.
- Supporting policy dialogue with national health authorities on the integration of SCD care into decentralized primary healthcare models.
- Informing MSF's operational strategies for chronic disease care, building on lessons from HIV Differentiated Service Delivery Models (DSDM).
- Serve as a model for decentralization which provides evidence for advocacy to encourage resource allocation and scale-up of decentralized SCD services within Uganda's and other countries national health strategy.
This study shares objectives with a study ongoing in rural areas of Niger on care for SCD patients. The data will be aligned and results combined as possible to strengthen the conclusions on models of SCD care outside of reference centers in rural areas in resource-limited settings.
Ultimately, this study's findings could contribute to broader efforts to reduce health inequities faced by people living with SCD in resource-limited settings, while also alleviating pressure on tertiary healthcare facilities.
Our role
Coordination
Partners
- Ministry oh health, Uganda
Methodology
Quantitative: Observational cohort study of all patients in the SCD program to maximize sample size and provide a comprehensive description of patients and the program. The cohort will allow us to make several comparisons between subgroups based on their care journey: comparing before and after HU initiation, and between patients receiving care at Kasese Adolescent Clinic and those receiving care at the satellites.
Qualitative: Survey, individual interviews, and focus group discussions will be conducted among a sub-group of health care workers, caregivers and patients to have a variety of viewpoints and increased depth of analysis.