Electronic Theses and Dissertations

Kelly Pimenta

Date

2025

Document Type

Dissertation

Degree Name

Doctor of Philosophy

Department

Epidemiology

Committee Chair

Matthew Smeltzer

Committee Member

Abu Mohammed Naser Titu

Committee Member

Jane Hankins

Committee Member

Meredith Ray

Abstract

Sickle cell disease (SCD) is an inherited hemoglobinopathy that remains a major contributor to global morbidity and mortality. While advances in neonatal screening, therapeutic interventions, and supportive care have significantly improved survival rates, individuals with SCD continue to experience challenges, particularly during pediatric to adult healthcare. Health care transition (HCT) represents a critical period associated with increased healthcare utilizations and a heightened risk of mortality. Although structured transition programs have been implemented in high-income countries (HICs), transition readiness remains largely unaddressed in low- and middle-income countries (LMICs), including Brazil. The dissertation aims to assess the burden of SCD, identify the key determinants influencing HCT in Brazil, and evaluate predictors to transition readiness in both Brazil and the United States. The overarching objective is to understand the cultural context of transition readiness in an LMIC setting to inform scalable interventions. In the first aim examined the contemporary burden of SCD among individuals under-5 and under-20, revealing an overall prevalence of 0.9%, with 0.9% among children under-5 and a proportion of 1.8% among those under-20. The second aim identified key determinants for HCT, including structural and systematic challenges, the emotional impact of transition, and the need for improved patient-provider communication. The third aim assessed transition readiness in two Brazilian institutions, with a comparative analysis to the United States. Results indicated that Brazilian patients and US share some of the same predictors to transition readiness (e.g. age) although Brazilian patients score, on average, 4.58 points lower than their US counterparts highlighting the potential benefits of implementing a formalized transition program. As individuals with SCD reach adulthood, the establishment of a structured program is essential to ensuring continuity of care and improve health outcomes. However, transition models effective in HICs may not be directly transferable to LMIs, emphasizing the need for context-specific adaptations. Understanding the cultural and systemic factors influencing transition readiness is critical to developing sustainable and effective HCT programs in resource-limited settings.

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Embargoed until 04-22-2026

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Available for download on Wednesday, April 22, 2026

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