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.
- congenital abnormalities
- patient perspective
- paediatric practice
- adolescent health
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Contributors MR conceived the idea and is the guarantor of the study. MR, RR, RS, BC and RKK supervised the collection of the data. RR, BC and AS participated in data collection.MR, RKK, RS and AS carried out data management. MR CK and AS analysed the data. MR and RKK drafted the manuscript. AS, RR, RS, CK and BC read the drafts and provided feedback. All authors read and approved the final manuscript.
Funding The study was funded by the Indian Council of Medical Research (ICMR) under the Ministry of Health and Family Welfare, Government of India, New Delhi, India. The funders had no role in the design, conduct, data management, analysis or reporting of results related to this study.
Competing interests None declared.
Ethics approval The study was approved by the institutional ethics committee (IEC).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The additional unpublished data that is deidentified may be obtained by request submitted to the Head of the Department, Division of Pediatric Cardiology, Amrita Institute of Medical Sciences & Research Centre, Kochi, Kerala, India. This facility is available for documented and approved research projects subjected to study institutional as well as national procedures/charges as and where applicable.
Patient consent for publication Not required.
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