Adult congenital cardiac life-long needs evaluation in a low-middle income country, Pakistan | [Journal of Pakistan Medical Association • 2020]

Author(s):

1. Laila Akbar Ladak: Charles Perkins Centre, Sydney Nursing School, The University of Sydney,Sydney,Australia

2. Disty Pearson: Department of Cardiovascular Medicine, Boston Childrens Hospital,Boston,United States of America

3. Kathy Jenkins: Department of Cardiology, Harvard Medical School,Boston,United States of America

4. Muneer Amanullah: Department of Pediatric Cardiac Surgery, Pediatric Cardiac Services, National Institute of Cardiovascular Diseases,Karachi,Pakistan

5. Waris Ahmad: Department of Pediatrics Cardiac Surgery, The Aga Khan University,Karachi,Pakistan

6. Kaitlin Doherty Schmeck: Healthcare Sector, PA Consulting Group, Cambridge, Massachusetts, United States of America

7. Amy Verstappen: Global Health, University of Barcelona,Barcelona,Spain

8. Babar Sultan Hasan: Department of Pediatrics and Child Health, The Aga Khan University,Karachi,Pakistan

Abstract:

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 paediatric and adult cardiologists of fi ve 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. Conclusion: Majority of ACHD patients in Pakistan did not know that life-long follow-up is needed. Education regarding lifelong care for ACHD patients was identifi ed as a means to alleviate the knowledge gap.

Page(s): 2332-2337

DOI: DOI not available

Published: Journal: Journal of Pakistan Medical Association, Volume: 70, Issue: 12B, Year: 2020

Keywords:

low middle income country , Health care professional , Lifelong care , Adult congenital heart disease

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