Health related quality of life in adults after late repair of tetralogy of fallot: experience from a low-middle income country

Maha Inam, Laila Akbar Ladak, Mahin Janjua, Maarij Malik, Fatima Ali, Mahim Akmal Malik

Research output: Contribution to journalArticlepeer-review


Purpose: Without neonatal screening in low middle-income countries like Pakistan, Tetralogy of Fallot (TOF) is a congenital heart disease which frequently remains untreated beyond infancy. The purpose of this study is to determine and assess outcomes and health related quality of life (HRQOL) in patients who undergo complete repair of TOF as adults. Methods: 56 patients who underwent complete TOF repair after 16 years of age were included. Patient data was collected via retrospective chart review, and a semi structured interview along with Short-Form 36 (SF-36) questionnaire were used to assess HRQOL. Results: 66.1% of patients were male with the mean age at surgery of 22.3 ± 6.00. All patients had a post-operative NYHA Classification of I or II, 94.6% had an ejection fraction of ≥ 50% and 28.6% showed small residual lesions in follow-up echocardiograms. 32.1% of patients suffered post-operative morbidity. For the quantitative assessment using SF-36 scores, patients showed good scores of median 95 (65–100). A major cause of delay to treatment was lack of consensus between treatments offered by doctors in different parts of Pakistan. There was a pattern of ‘inability to fit in’ among patients who had had late TOF repair, despite self- reported improved HRQOL. Conclusion: Our results indicate that even with a delayed diagnosis, surgical repair of TOF produces good functional results. However, these patients face significant psychosocial issues. While early diagnosis remains the ultimate goal, patients undergoing late repair should be managed in more holistic manner with attention to psychological impact of the disease as well.

Original languageEnglish
Pages (from-to)3063-3074
Number of pages12
JournalQuality of Life Research
Issue number11
Publication statusPublished - Nov 2023


  • Adult congenital heart disease
  • Adults
  • Congenital heart disease
  • Delayed repair
  • Health related quality of life
  • Tetralogy of fallot


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