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

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 pati...

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Bibliographic Details
Published in:Quality of life research 2023-11, Vol.32 (11), p.3063-3074
Main Authors: Inam, Maha, Ladak, Laila Akbar, Janjua, Mahin, Malik, Maarij, Ali, Fatima, Akmal Malik, Mahim
Format: Article
Language:English
Subjects:
Cardiovascular disease
Congenital diseases
Medicine
Medicine & Public Health
Public Health
Quality of life
Quality of Life Research
Sociology
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Summary: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.
ISSN:0962-9343
1573-2649
DOI:10.1007/s11136-023-03453-7