Key result
Uncorrected congenital heart disease in children and adolescents was associated with significantly lower self-reported total generic HRQOL compared to controls (adjusted median difference -20.6; P<0.001).
Why the study?
Data on health-related quality of life for children and adolescents with uncorrected congenital heart disease from low- and middle-income countries where late presentation is common are limited.
Does uncorrected congenital heart disease reduce health-related quality of life in children and adolescents compared to community controls?
Cross-Sectional (n=1,027)
Does uncorrected congenital heart disease reduce health-related quality of life in children and adolescents compared to community controls?
Mean Difference: -20.6 (95% CI -24.9–-16.3)
Absolute Event Rate: 71.7% vs 91.3%
p-value: p=<0.001
Children and adolescents with uncorrected congenital heart disease in low- and middle-income countries experience significantly lower health-related quality of life compared to healthy peers.
Lower HRQOL in uncorrected CHD supports routine screening in LMICs; leaves open whether timely correction improves scores.
OBJECTIVE: There are limited data on health-related quality of life (HRQOL) for children and adolescents with uncorrected congenital heart disease (CHD) from low-income and middle-income countries where late presentation is common. We sought to compare HRQOL of children and adolescents with uncorrected CHD to that of controls using the Pediatric Quality of Life Inventory (PedsQL 4.0). METHODS: The study design is a cross-sectional analytical survey. The study setting was (1) Hospital-based survey of patients with CHD and their parents. (2) Community survey of controls and their parents. Subjects included (1) Children/adolescents with CHD between the ages of 2 years and 18 years and their parents enrolled in a previous study (n=308). (2) Unmatched community controls (719 children/adolescents, aged 2-18 years) and their parents. Participants were given PedsQL 4.0 to fill out details. Parents assisted children 5-7 years of age in filling the questionnaires. Children younger than 5 years had only parent-reported HRQOL and those above 5 years had both self-reported and parent-reported HRQOL. RESULTS: The median (IQR) total generic HRQOL from self-reports for CHD subjects and controls were 71.7 (62.0, 84.8) and 91.3 (82.6, 95.7), respectively. The corresponding figures for parent-reports were 78.3 (63.0, 90.5) and 92.4 (87.0, 95.7) respectively. The adjusted median difference was -20.6 (99% CI -24.9 to -16.3, p<0.001) for self-reported and -14.1 (99% CI -16.7 to -11.6, p<0.001) for parent-reported total HRQOL between patients with CHD and controls. Cardiac-specific HRQOL by self-reports was 75.0 (53.6, 92.9) for heart problems, 95.0 (73.8, 100.0) for treatment barriers, 83.3 (66.7, 100.0) for physical appearance, 87.5 (62.5, 100.0) for treatment-related anxiety, 91.7 (68.8, 100.0) for cognitive problems and 83.3 (66.7, 100.0) for communication. The values for parent-reports were 71.4 (53.6, 85.7), 100.0 (75.0, 100.0), 100.0 (75.0, 100.0), 81.3 (50.0, 100.0), 100.0 (81.2, 100.0) and 83.3 (50.0, 100.0), respectively. CONCLUSIONS: Children and adolescents with uncorrected CHD reported significant reductions in overall quality of life compared with controls.
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Raj et al. (2019) conducted a cross-sectional in Uncorrected congenital heart disease (n=1,027). Uncorrected congenital heart disease vs. Community controls was evaluated on Total generic HRQOL (self-reported) (MD -20.6, 95% CI -24.9 to -16.3, p=<0.001). Uncorrected congenital heart disease in children and adolescents was associated with significantly lower self-reported total generic HRQOL compared to controls (adjusted median difference -20.6; P<0.001).
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