Adult congenital cardiac life-long needs evaluation in a low-middle income country, Pakistan


  • Laila Akbar Ladak Charles Perkins Centre, Sydney Nursing School, The University of Sydney, Sydney, Australia
  • Disty Pearson Department of Cardiovascular Medicine, Boston Childrens Hospital, Boston, United States of America
  • Kathy Jenkins Department of Cardiology, Harvard Medical School, Boston, United States of America
  • Muneer Amanullah Department of Pediatric Cardiac Surgery, Pediatric Cardiac Services, National Institute of Cardiovascular Diseases, Karachi, Pakistan
  • Waris Ahmad Department of Pediatrics Cardiac Surgery, The Aga Khan University, Karachi, Pakistan
  • Kaitlin Doherty Schmeck Healthcare Sector, PA Consulting Group, Cambridge, Massachusetts, United States
  • Amy Verstappen Global Health, University of Barcelona, Barcelona, Spain
  • Babar Sultan Hasan Department of Pediatrics and Child Health, The Aga Khan University, Karachi, Pakistan




Objective: Adult congenital heart diseases (ACHD) have distinct health care needs that require life-long care. Limited data is available from low-middle income countries (LMIC). This descriptive study conducted in Pakistan aimed to assess patients and health care professionals understanding of the needs for ACHD care and the perceived barriers to care.

Methods: A telephone survey was conducted of ACHD patients. An e-mail survey was sent to the pediatric and adult cardiologists of five institutions (3 public and 2 private) that provide ACHD services in Pakistan. Descriptive statistics (frequencies, mean ± SD, median) were used for data analysis.

Results: A total of 128 ACHD patients were surveyed, 65 (51%) were females with a mean age of 29.4±10.4 years. Atrial septal defect repair was the most common surgical procedure. Mean age at surgery was 25.6±10.49 years, and a surgical follow-up period of 3.8±2.3 years.

Majority (n=3, 60%) of the health care professionals (HCPs) responded that 75-100% of the ACHD surgical patients would need lifelong care, yet 10-25% return to their cardiology clinics.

Most of the surveyed ACHD patients (89%, n=114) demonstrated a lack of understanding of life-long care after surgery due to not being communicated by their HCPs. Cost and travelling issues were the barriers highlighted by HCPs. Both ACHD patients (96%, n=122) and HCP (100%, n=5) underscored their interest in life-long care.



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How to Cite

Laila Akbar Ladak, Disty Pearson, Kathy Jenkins, Muneer Amanullah, Waris Ahmad, Kaitlin Doherty Schmeck, Amy Verstappen, & Babar Sultan Hasan. (2020). Adult congenital cardiac life-long needs evaluation in a low-middle income country, Pakistan. Journal of the Pakistan Medical Association, 1–16.



Research Article