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ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2023

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

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Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

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1 citing paper in PubMed.

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5 · Who and what money

Authors and funding

6 authors.

Maha Inam *Medical College, Aga Khan University Hospital, Karachi, Pakistan.
Laila Akbar Ladak *School of Nursing and Midwifery, Aga Khan University Hospital, Karachi, Pakistan.
Mahin JanjuaDepartment of Surgery, Howard University College of Medicine, Washington, DC, USA.
Maarij MalikMedical College, Aga Khan University Hospital, Karachi, Pakistan.
Fatima AliDepartment of Pediatrics, Aga Khan University Hospital, Karachi, Pakistan.
Mahim Akmal MalikDepartment of Cardiac Surgery, Rawalpindi Institute of Cardiology, Rawalpindi, Pakistan. mahim.malik@gmail.com.ORCID http://orcid.org/0000-0001-5377-784X

Funding

University Research Council, Aga Khan University Department of CardioThoracic Surgery
6 · The paper itself

Abstract

purposeWithout 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.

methods56 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.

results66.1% 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.

conclusionOur 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.

Indexed as

Tetralogy of FallotAdultDeveloping CountriesFemaleHumansInfant, NewbornMaleQuality of LifeRetrospective StudiesSurveys and QuestionnairesTreatment OutcomeAdult congenital heart diseaseAdultsCongenital heart diseaseDelayed repairHealth related quality of lifeTetralogy of fallot

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.