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Health-related quality of life in infants and toddlers with congenital heart disease: a cross-sectional survey from South India
  1. Manu Raj1,2,
  2. Abish Sudhakar1,
  3. Rinku Roy1,
  4. Sumi Soman2,
  5. Libin Antony2,
  6. Bhavik Champaneri1,
  7. Raman Krishna Kumar1
  1. 1Department of Pediatric Cardiology, Amrita Institute of Medical Sciences and Research Centre, Amrita Vishwa Vidyapeetham University, Cochin, India
  2. 2Department of Public Health Research, Amrita Institute of Medical Sciences and Research Centre, Amrita Vishwa Vidyapeetham University, Cochin, India
  1. Correspondence to Dr Manu Raj, Amrita Institute of Medical Sciences and research Centre, Kochi, Kerala, India,; drmanuraj{at}gmail.com

Abstract

Objective There are limited data on health-related quality of life (HRQOL) for infants and toddlers with congenital heart disease (CHD). We sought to compare generic HRQOL of infants and toddlers between CHD subjects and controls.

Design Dual-setting, cross-sectional analytical survey.

Setting We collected HRQOL data on infants and toddlers through a community survey for controls and through a hospital-based survey for those with CHD.

Patients A total of 499 subjects with confirmed CHD in the age group of 1–24 months admitted for elective surgery in the study institution were selected by consecutive sampling. In addition, we selected 628 control children in the same age group from an area within the 10 km radius of the study institution.

Main outcome measures The data contain parent proxy report of HRQOL. The Pediatric Quality of Life Inventory (PedsQL 4.0) was used to collect HRQOL data. Questionnaires were self-administered for parents.

Results The mean total proxy HRQOL scores were significantly higher in control infants compared with infants with CHD (adjusted mean difference 5.0, 99% CI 2.5 to 7.5, p<0.001). Corresponding figure for toddlers was 7.6 (95% CI 5.0 to 10.2, p<0.001). There was no significant difference in total HRQOL scores across CHD functional classes among infants and toddlers (p=0.212 and p=0.502, respectively).

Conclusions Infants and toddlers with uncorrected CHD have significant deficiency in proxy HRQOL compared with their controls. The functional class of CHD appears to have no differential impact on overall HRQOL deficiency in this age group.

  • infants
  • children
  • congenital heart disease
  • health related quality of life
  • pedsql

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Footnotes

  • Contributors MR conceived the idea and is the guarantor of the study. MR, RR, SS, LA, BC and RKK supervised the collection of the data. RR, SS, LA, BC and AS participated in data collection. MR, RKK and AS carried out data management. MR and AS analysed the data. MR and RKK drafted the manuscript. RR, SS, LA and BC read the drafts and provided feedback. All authors read and approved the final manuscript.

  • Competing interests None declared.

  • Patient consent Parental/guardian consent obtained.

  • Ethics approval Institutional Ethics Committee, Amrita Institute of Medical Sciences, Kochi, Kerala, India - Registration Number: ECR/129/Inst/KL/2013.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement The de-identified raw data collected as part of this study are available for research purpose upon request to the Head of the Department of Pediatric Cardiology, Amrita Institute of Medical Sciences, Kochi, Kerala, India.

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