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

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Title: Health related quality of life in adults after late repair of tetralogy of fallot: experience from a low-middle income country.
Authors: Inam, Maha (AUTHOR), Ladak, Laila Akbar (AUTHOR), Janjua, Mahin (AUTHOR), Malik, Maarij (AUTHOR), Ali, Fatima (AUTHOR), Akmal Malik, Mahim (AUTHOR)
Source: Quality of Life Research. Nov2023, Vol. 32 Issue 11, p3063-3074. 12p. 1 Diagram, 6 Charts.
Subjects: Tetralogy of Fallot, Repairing, Child patients, Congenital heart disease, Semi-structured interviews, Quality of life, Newborn screening
Geographic Terms: Pakistan
Abstract: 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. [ABSTRACT FROM AUTHOR]
Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Health related quality of life in adults after late repair of tetralogy of fallot: experience from a low-middle income country.
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  Data: <searchLink fieldCode="AR" term="%22Inam%2C+Maha%22">Inam, Maha</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ladak%2C+Laila+Akbar%22">Ladak, Laila Akbar</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Janjua%2C+Mahin%22">Janjua, Mahin</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Malik%2C+Maarij%22">Malik, Maarij</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Ali%2C+Fatima%22">Ali, Fatima</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Akmal+Malik%2C+Mahim%22">Akmal Malik, Mahim</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Quality+of+Life+Research%22">Quality of Life Research</searchLink>. Nov2023, Vol. 32 Issue 11, p3063-3074. 12p. 1 Diagram, 6 Charts.
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  Data: <searchLink fieldCode="DE" term="%22Tetralogy+of+Fallot%22">Tetralogy of Fallot</searchLink><br /><searchLink fieldCode="DE" term="%22Repairing%22">Repairing</searchLink><br /><searchLink fieldCode="DE" term="%22Child+patients%22">Child patients</searchLink><br /><searchLink fieldCode="DE" term="%22Congenital+heart+disease%22">Congenital heart disease</searchLink><br /><searchLink fieldCode="DE" term="%22Semi-structured+interviews%22">Semi-structured interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br /><searchLink fieldCode="DE" term="%22Newborn+screening%22">Newborn screening</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Pakistan%22">Pakistan</searchLink>
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  Label: Abstract
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  Data: 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. [ABSTRACT FROM AUTHOR]
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  Label:
  Group: Ab
  Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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        Value: 10.1007/s11136-023-03453-7
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      – SubjectFull: Repairing
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      – SubjectFull: Child patients
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      – SubjectFull: Pakistan
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      – TitleFull: Health related quality of life in adults after late repair of tetralogy of fallot: experience from a low-middle income country.
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              M: 11
              Text: Nov2023
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              Y: 2023
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