From Early detection to Outcome: Transforming Congenital Heart Disease Care in Tanzania: An Evidence Based-Perspective

This thesis investigates the burden, diagnosis, and management of congenital heart disease (CHD) in Tanzania, emphasising the critical importance of early detection through pulse oximetry (POX) screening. The findings are presented in three thematic parts that collectively offer a comprehensive understanding of the CHD landscape and practical strategies to improve outcomes.

Part 1: Global Perspective and Burden of CHD in Tanzania (Chapters 1–3)
The first section explores global and regional CHD burden, noting CHD affects 1 in 100 live births globally, with CCHD accounting for 2.5–3 per 1,000 and contributing to nearly 10% of neonatal deaths. In Tanzania, an estimated 13,600 children are born annually with CHD, around 4,000 of whom have CCHD. Chapter 2 analyzes echocardiographic data from over 6,000 children referred to JKCI, revealing that 80% of diagnosed heart defects were CHDs, mostly detected late (median age: 1 year). Ventricular septal defects (VSD), patent ductus arteriosus (PDA), and Tetralogy of Fallot (TOF) were predominant. Challenges include late referrals, a 40% hospitalization rate, and poor referral systems. Chapter 3 details the Tanzanian POX Study, which screened over 10,000 newborns and found a CCHD birth prevalence of 3.27 per 1,000—higher than previously reported. Surgical intervention significantly improved survival (88% vs. 40%). These chapters advocate for integrating POX screening and strengthening referral pathways.

Part 2: Surgical Outcomes and Quality of Life (Chapters 4–6)
This section highlights Tanzania’s growing surgical capacity at JKCI, where annual pediatric surgeries rose from 34 in 2015 to 350 in 2023, with 70% performed by local teams. Chapter 4 focuses on TOF repairs, showing most surgeries occur after age 1, with underweight status and severe cyanosis linked to poorer outcomes. In-hospital mortality was 5.9%, but no deaths occurred in children operated on before one year. Chapter 5 shows significant improvement in children’s health-related quality of life (HRQoL) after surgery, with financial hardship as a major barrier. Chapter 6 examines caregiver QoL using the Swahili PedsQL Family Impact Module, revealing improved emotional well-being post-surgery but persistent family stress, underscoring the need for psychosocial support.

Part 3: Feasibility and Impact of POX Screening (Chapters 7–12)
This section assesses POX screening’s feasibility and cost-effectiveness. Chapter 7 describes a prospective cohort study enrolling 30,000 newborns at two hospitals. Chapter 8 reports high specificity (99.5%) and moderate sensitivity (50%), improving with dual screening and mandatory physical exams. Chapter 9’s systematic review confirms that combining POX and physical exams increases sensitivity to 93%. Chapter 10 shows POX also detects non-cardiac neonatal conditions like sepsis and PPHN. Chapter 11 shares healthcare workers’ positive views on scalability. Chapter 12 confirms POX’s affordability (USD 6–8 per newborn) and cost-effectiveness (USD 264.87 per QALY), with a return of USD 20 for every USD 1 invested.

Altogether, this thesis demonstrates that early CHD detection via POX is feasible, life-saving, and economically sound, offering a scalable strategy to improve child survival in Tanzania and similar settings.