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Health-related quality of life in surgical children and adolescents with congenital heart disease compared with their age-matched healthy sibling: a cross-sectional study from a lower middle-income country, Pakistan
  1. Laila Akbar Ladak1,
  2. Babar S Hasan2,
  3. Janice Gullick3,
  4. Khadija Awais4,
  5. Ahmed Abdullah4,
  6. Robyn Gallagher1
  1. 1Charles Perkins Centre and Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, University of Sydney, Camperdown, New South Wales, Australia
  2. 2Department of Pediatrics and Child Health, The Aga Khan University, Karachi, Pakistan
  3. 3Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, University of Sydney—Mallett Street Campus, Camperdown, New South Wales, Australia
  4. 4Medical College, The Aga Khan University, Karachi, Pakistan
  1. Correspondence to Laila Akbar Ladak, Charles Perkins Centre, Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, The University of Sydney, Camperdown NSW 2006, Australia; llad8915{at}uni.sydney.edu.au

Abstract

Objective Inconsistencies have been reported in health-related quality of life (HRQOL) in postoperative congenital heart disease (CHD). Despite the need for lifelong care due for residual symptoms, only a few studies have explored cardiac-related HRQOL but none in lower middle-income countries (LMIC). This study therefore addresses the gap by exploring HRQOL and its associated predictors in postoperative CHD in Pakistan.

Outcome measures General and cardiac-related HRQOL, associated predictors.

Methods This cross-sectional study recruited patients with CHD and age-matched healthy siblings as controls (n=129 each) at a single centre in Pakistan. Patients and their siblings completed HQROL surveys (PedsQL 4.0 Generic Core, PedsQL Cognitive Functioning). Patients only completed PedsQL 3.0 Cardiac module. Generalised linear models identified predictors.

Results The sample mean age was 8.84±3.87 years and 70% were below the poverty line for an LMIC. The majority (68%) had their first surgery after 1 year of age and were interviewed at a mean 4.08±1.91 years postoperatively.

Patients with CHD had lower HRQOL in all domains compared with their age-matched siblings, with the biggest differences for total HRQOL (effect size, d=−1.35). Patients with complex CHD had lower HRQOL compared with simple to moderate CHDs in cardiac-related HRQOL. The lowest scores were for treatment problems (effect size, d=−0.91). HRQOL was worse for patients who were on cardiac medications, had complex CHD, longer cardiopulmonary bypass time, re-operations and were female.

Conclusions HRQOL issues persist in postoperative patients with CHD in LMIC, Pakistan. Solutions are needed to address poor HRQOL and lifelong concerns of patients and their parents.

  • Cardiac Surgery
  • Patient Perspective
  • Paediatric Surgery
  • Outcomes Research

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Footnotes

  • Contributors LAL is a PhD candidate who conceived the study, contributed to the study design, conducted the data collection, data analysis, drafted and revised the manuscript. BSH contributed to the study design, provided critical feedback on the manuscript drafts. JG contributed to the study design, provided critical feedback on the manuscript drafts. KA contributed to the study design, provided critical feedback on the manuscript drafts. AA contributed to the study design, provided critical feedback on the manuscript drafts. RG contributed to the study design, mentored in data analysis, provided critical feedback on the manuscript drafts. All authors approved the final manuscript as submitted and agreed to be accountable for all aspects of the work.

  • Funding This study is part of a PhD thesis. LAL received an International Postgraduate Research Scholarship (IPRS) and Australian Postgraduate Award (APA) from The University of Sydney, Australia to pursue Doctoral studies. This study has been endorsed by the International Society of Adult Congenital Heart Disease (ISACHD). However, no funding was secured for this study.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Ethics Review Committe, The Aga Khan University, Pakistan (3737-Ped-ERC-15).

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

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