The Quality of Life of Children With Heart Disease in Tanzania: a Single Center Study

Abstract

Background The demand for managing congenital heart disease (CHD) exceeds the available resources in low- and middle-income countries (LMICs). This has resulted in a growing population of children with CHD, with only few receiving surgical interventions, while many more are waiting for intervention. Health-related quality of life (HRQOL) and its impact on the pediatric CHD population in these settings have been largely overlooked, and limited research has been conducted. Therefore, this study aimed to explore HRQOL in the pediatric CHD population in Tanzania by comparing unoperated and operated patients, thus bridging the knowledge gap. Methods This cross-sectional study included patients with CHD aged 2 to 18 years, without severe comorbidities, at the outpatient department of the Jakaya Kikwete Cardiac Institute, either pre- or postoperatively, with follow-up of at least six months after cardiac surgery. The Pediatric HRQoL Generic Core Scale (PedsQL™ 4.0 SF15, Swahili Version) was used. The main outcomes were general HRQoL, as reported by parents and patients, and clinical and sociodemographic variables. Questions were scored on a Likert linear analogue scale; a higher score indicated a better HRQoL. The means of the HRQoL scores are summarized. The between-group scores were compared with Student’s t test or the Mann‒Whitney U test. Generalized linear models were used to identify predictors of HRQOL. Results The mean age of the children was 6.3 ± 3.7 years, with a female predominance (n = 110, 53.9%). Operated patients had a greater socioeconomic status (0.71/1 vs 0.66/1) and more frequent early diagnosis (< 1 year; 67.8% vs 47.1%). The complexity of cardiac diagnosis was similar between the groups. Operated patients had significantly higher parent-reported HRQOL scores (90.8 ± 10.2 vs 80.5 ± 16.7), with the most noticeable difference in the physical domain (effect size d=-0.813). Operation and higher socioeconomic status were found to be significant predictors of better HRQOL. HRQoL significantly decreased with increasing severity of heart failure symptoms. Conclusions The QoL of operated Tanzanian children with CHD differed significantly from that of their unoperated counterparts. Reducing symptoms for those on the waiting list can improve their QoL. In this setting, health-related QoL in children with CHD is strongly predicted and influenced by socioeconomic status, emphasizing the need for interventions to address socioeconomic disparities and improve patient outcomes.