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Health-related quality of life in adult CHD surgical patients in a low middle-income country: a mixed-methods study

Published online by Cambridge University Press:  23 June 2020

Laila A. Ladak Open the ORCID record for Laila A. Ladak [Opens in a new window] ,
Robyn Gallagher ,
Babar S. Hasan ,
Khadija Awais ,
Ahmed Abdullah  and
Janice Gullick
Laila A. Ladak*
Affiliation:
Department of Paediatrics and Child Health, School of Nursing and Midwifery, The Aga Khan University, Karachi, Pakistan Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, The University of Sydney, Sydney, Faculty of Medicine and Health, Sydney, New South Wales, Australia
Robyn Gallagher
Affiliation:
Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, The University of Sydney, Sydney, Faculty of Medicine and Health, Sydney, New South Wales, Australia Charles Perkins Centre, Sydney Nursing School Faculty of Medicine and Health, Sydney, New South Wales, Australia
Babar S. Hasan
Affiliation:
Department of Paediatrics and Child Health, The Aga Khan University, Karachi, Pakistan
Khadija Awais
Affiliation:
Medical College, The Aga Khan University, Karachi, Pakistan
Ahmed Abdullah
Affiliation:
Medical College, The Aga Khan University, Karachi, Pakistan
Janice Gullick
Affiliation:
Susan Wakil School of Nursing and Midwifery, Sydney Nursing School, The University of Sydney, Sydney, Faculty of Medicine and Health, Sydney, New South Wales, Australia
*
Author for correspondence: Laila Akbar Ladak, The Aga Khan University, Stadium Road, Karachi, Pakistan. Tel: +923002000516; Fax: +922134934294, 34932095. E-mail: [email protected]
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Abstract

Background and objectives:

This mixed-methods study aimed to assess health-related quality of life in young adults with CHD following surgery in a low middle-income country, Pakistan. Despite the knowledge that geographic, cultural and socio-economic factors may shape the way health and illness is experienced and managed and consequently determine a person’s health-related quality of life, few health-related quality of life studies are conducted in low middle-income countries. This deficit is pronounced in CHD, so there is little guidance for patient care.

Methods:

The study utilised concurrent, mixed methods. Adults with CHD (n = 59) completed health-related quality of life surveys (PedsQLTM 4.0 Generic Core Scale, PedsQLTM Cognitive Functioning Scale and PedsQLTM 3.0 Cardiac Module). Semi-structured interview data were collected from a nested sub-sample of 17 participants and analysed using qualitative content analysis, guided by the revised Wilson–Cleary model of health-related quality of life.

Results:

The lowest health-related quality of life domain was emotional with the mean score (71.61 ± 20.6), followed by physical (78.81 ± 21.18) and heart problem (79.41 ± 18.05). There was no statistical difference in general or cardiac-specific health-related quality of life between mild, moderate or complex CHD. Qualitative findings suggested low health-related quality of life arose from a reduced capacity to contribute to family life including family income and gender. A sense of reduced marriageability and fear of dependency were important socio-cultural considerations.

Conclusions:

CHD surgical patients in this low-income country experience poor health-related quality of life, and contributing factors differ to those reported for high-income countries. Socio-cultural understandings should underpin assessment, management and care-partnering with young adults with CHD following surgical correction.

Keywords

AdultCHDhealth-related quality of lifesurgerymixed-methods researchlow middle-income country
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 8 , August 2020 , pp. 1126 - 1137
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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Footnotes

Endorsement: This study has been endorsed by International Society of Adult Congenital Heart Disease.

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