Hostname: page-component-848d4c4894-ttngx Total loading time: 0 Render date: 2024-05-27T21:33:46.430Z Has data issue: false hasContentIssue false
  • English
  • Français

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: laila.ladak@aku.edu
Get access Rights & Permissions [Opens in a new window]

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

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

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

References

Baumgartner, H, Bonhoeffer, P, De Groot, NM, et al.ESC Guidelines for the management of grown-up congenital heart disease (new version 2010). Eur Heart J 2010; 31: 2915–2957.Google Scholar
Westhoff-Bleck, M, Briest, J, Fraccarollo, D, et al.Mental disorders in adults with congenital heart disease: unmet needs and impact on quality of life. J Affect Disord 2016; 204: 180–186.CrossRefGoogle ScholarPubMed
Ladak, LA, Hasan, BS, Gullick, J, et al.Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and meta-analysis. Arch Dis Child 2018: archdischild-2017-313653.Google Scholar
Birks, Y, Sloper, P, Lewin, R, et al.Exploring health-related experiences of children and young people with congenital heart disease. Health Expect 2007; 10: 16–29. Research Support, Non-U.S. Gov’t.CrossRefGoogle Scholar
Kahr, PC, Radke, RM, Orwat, S, et al.Analysis of associations between congenital heart defect complexity and health-related quality of life using a meta-analytic strategy. Int J Cardiol 2015; 199: 197–203.10.1016/j.ijcard.2015.07.045CrossRefGoogle ScholarPubMed
Fteropoulli, T, Stygall, J, Cullen, S, et al.Quality of life of adult congenital heart disease patients: a systematic review of the literature. Cardiol Young 2013; 23: 473–485. Research Support, Non-U.S. Gov’t Review. http://dx.doi.org/10.1017/S1047951112002351.CrossRefGoogle ScholarPubMed
Pike, NA, Evangelista, LS, Doering, LV, et al.Quality of life, health status, and depression: comparison between adolescents and adults after the Fontan procedure with healthy counterparts. J Cardiovasc Nurs 2012; 27: 539–546. Comparative Study. http://dx.doi.org/10.1097/JCN.0b013e31822ce5f6.CrossRefGoogle ScholarPubMed
Apers, S, Kovacs, AH, Luyckx, K, et al.Quality of life of adults with congenital heart disease in 15 countries: evaluating country-specific characteristics. J Am Coll Cardiol 2016; 67: 2237–2245.10.1016/j.jacc.2016.03.477CrossRefGoogle ScholarPubMed
Ternestedt, BM, Wall, K, Oddsson, H, et al.Quality of life 20 and 30 years after surgery in patients operated on for tetralogy of Fallot and for atrial septal defect. Pediatr Cardiol 2001; 22: 128–132.CrossRefGoogle ScholarPubMed
Walker, WT, Temple, IK, Gnanapragasam, JP, et al.Quality of life after repair of tetralogy of Fallot. Cardiol Young 2002; 12: 549–553.CrossRefGoogle ScholarPubMed
Vigl, M, Niggemeyer, E, Hager, A, et al.The importance of socio-demographic factors for the quality of life of adults with congenital heart disease. Qual Life Res 2011; 20: 169–177. Research Support, Non-U.S. Gov’t. http://dx.doi.org/10.1007/s11136-010-9741-2.CrossRefGoogle ScholarPubMed
Moons, P, Kovacs, AH, Luyckx, K, et al.Patient-reported outcomes in adults with congenital heart disease: inter-country variation, standard of living and healthcare system factors. Int J Cardiol 2018; 251: 34–41.CrossRefGoogle ScholarPubMed
Calderon, J, Angeard, N, Moutier, S, et al.Impact of prenatal diagnosis on neurocognitive outcomes in children with transposition of the great arteries. J Pediatr 2012; 161: 94–98.CrossRefGoogle ScholarPubMed
Eslami, B, Macassa, G, Sundin, O, et al.Quality of life and life satisfaction among adults with and without congenital heart disease in a developing country. Eur J Prev Cardiol 2015; 22: 169–179. doi: 10.1177/2047487313514017.CrossRefGoogle ScholarPubMed
Chen, CA, Liao, SC, Wang, JK, et al.Quality of life in adults with congenital heart disease: biopsychosocial determinants and sex-related differences. Heart 2011; 97: 38–43. Research Support, Non-U.S. Gov’t. http://dx.doi.org/10.1136/hrt.2010.200709.CrossRefGoogle ScholarPubMed
Ladak, LA, Hasan, BS, Gullick, J, et al.Health-related quality of life in surgical children and adolescents with congenital heart disease compared with their age-matched healthy sibling: a cross-sectional study from a lower middle-income country, Pakistan. Arch Dis Child 2019; 104: 419–425.CrossRefGoogle ScholarPubMed
Eslami, B, Macassa, G, Sundin, Ö, et al.Style of coping and its determinants in adults with congenital heart disease in a developing country. Congenit Heart Dis 2014; 9: 349–360. doi: 10.1111/chd.12150.CrossRefGoogle ScholarPubMed
Rassart, J, Apers, S, Kovacs, AH, et al.Illness perceptions in adult congenital heart disease: a multi-center international study. Int J Cardiol 2017; 244: 130–138.10.1016/j.ijcard.2017.06.072CrossRefGoogle ScholarPubMed
Farhat, T, Abdul-Sater, Z, Obeid, M, et al.Research in congenital heart disease: a comparative bibliometric analysis between developing and developed countries. Pediatr Cardiol 2013; 34: 375–382.CrossRefGoogle ScholarPubMed
Castro, FG, Kellison, JG, Boyd, SJ, et al.A methodology for conducting integrative mixed methods research and data analyses. J Mix Methods Res 2010; 4: 342–360.CrossRefGoogle ScholarPubMed
Ladak, LA, Hasan, BS, Gullick, J, et al.Health-related quality of life in congenital heart disease surgery patients in Pakistan: protocol for a mixed-methods study. BMJ open 2017; 7: e018046.CrossRefGoogle ScholarPubMed
Ferrans, CE, Zerwic, JJ, Wilbur, JE, et al.Conceptual model of health-related quality of life. J Nurs Scholarsh 2005; 37: 336–342.CrossRefGoogle ScholarPubMed
Varni, JW, Limbers, CA.The PedsQL™ 4.0 generic core scales young adult version: feasibility, reliability and validity in a university student population. J Health Psychol 2009; 14: 611–622.CrossRefGoogle Scholar
Graneheim, UH, Lundman, B.Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105–112.CrossRefGoogle ScholarPubMed
Jin, K, Neubeck, L, Koo, F, et al.Understanding prevention and management of coronary heart disease among Chinese immigrants and their family carers: a socioecological approach. J Transcult Nurs 2019: 1043659619859059.CrossRefGoogle Scholar
Klassen, AC, Creswell, J, Clark, VLP, et al.Best practices in mixed methods for quality of life research. Qual Life Res 2012; 21: 377–380.CrossRefGoogle ScholarPubMed
Elo, S, Kääriäinen, M, Kanste, O, et al.Qualitative content analysis: a focus on trustworthiness. Sage Open 2014; 4: 1–10.CrossRefGoogle Scholar
Van Nes, F, Abma, T, Jonsson, H, et al.Language differences in qualitative research: is meaning lost in translation? Eur J Ageing 2010; 7: 313–316.CrossRefGoogle ScholarPubMed
Warnes, CA, Liberthson, R, Danielson, GK, et al.Task force 1: the changing profile of congenital heart disease in adult life. J Am Coll Cardiol 2001; 37: 1170–1175.CrossRefGoogle ScholarPubMed
Islam, N.Sifarish, sycophants, power and collectivism: administrative culture in Pakistan. Int Rev Adm Sci 2004; 70: 311–330.CrossRefGoogle Scholar
Ladak, LA, Hasan, BS, Gullick, J, et al.Health-related quality of life in congenital heart disease surgery in children and young adults: a systematic review and meta-analysis. Arch Dis Child 2019; 104: 340–347.CrossRefGoogle Scholar
Knowles, R, Veldtman, G, Hickey, EJ, et al.Functional health status of adults with tetralogy of Fallot: matched comparison with healthy siblings. Ann Thorac Surg 2012; 94: 124–132.CrossRefGoogle ScholarPubMed
Jackson, JL, Hassen, L, Gerardo, GM, et al.Medical factors that predict quality of life for young adults with congenital heart disease: what matters most? Int J Cardiol 2016; 202: 804–809.CrossRefGoogle ScholarPubMed
Schoormans, D, Mulder, BJ, van Melle, JP, et al.Illness perceptions of adults with congenital heart disease and their predictive value for quality of life two years later. Eur J Cardiovasc Nurs 2014; 13: 86–94. Research Support, Non-U.S. Gov’t. http://dx.doi.org/10.1177/1474515113481908.CrossRefGoogle ScholarPubMed
Diener, E, Suh, EM, Smith, H, et al.National differences in reported subjective well-being: why do they occur? Soc Indic Res 1995; 34: 7–32.CrossRefGoogle Scholar
Friedman, HS.The Oxford Handbook of Health Psychology. Oxford University Press, 2011.CrossRefGoogle Scholar
Larsen, SH, Jacobsen, EB, Emmertsen, K, et al.Quality of life in children with congenital heart disease after surgery. Cardiol Young 2010; 20: 128.Google Scholar
Moons, P and Norekvål, TM.Is sense of coherence a pathway for improving the quality of life of patients who grow up with chronic diseases? A hypothesis. Eur J Cardiovasc Nurs 2006; 5: 16–20.CrossRefGoogle ScholarPubMed
Rehman, S and Azam Roomi, M.Gender and work-life balance: a phenomenological study of women entrepreneurs in Pakistan. JSBED 2012; 19: 209–228.CrossRefGoogle Scholar
Dearani, JA, Connolly, HM, Martinez, R, et al.Caring for adults with congenital cardiac disease: successes and challenges for 2007 and beyond. Cardiol Young 2007; 17: 87–96.CrossRefGoogle ScholarPubMed
Society PPC. Pakistan Pediatric Cardiology Society: For Children born with CHD. http://ppcsociety.org/ (2015, accessed 20th January 2020).Google Scholar
Mocumbi, AO.The challenges of cardiac surgery for African children. Cardiovasc J Afr 2012; 23: 165–167.CrossRefGoogle ScholarPubMed
Mocumbi, AO, Lameira, E, Yaksh, A, et al.Challenges on the management of congenital heart disease in developing countries. Int J Cardiol 2011; 148: 285–288. 2009/11/26. DOI: 10.1016/j.ijcard.2009.11.006.CrossRefGoogle ScholarPubMed
Yeung, E, Kay, J, Roosevelt, GE, et al.Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008; 125: 62–65. DOI: http://dx.doi.org/10.1016/j.ijcard.2007.02.023.CrossRefGoogle Scholar
Liljeroos, M, Strömberg, A.Introducing nurse-led heart failure clinics in Swedish primary care settings. Eur J Heart Fail 2019; 21: 103–109.CrossRefGoogle ScholarPubMed
Lantin-Hermoso, MR, Berger, S, Bhatt, AB, et al.The care of children with congenital heart disease in their primary medical home. Pediatrics 2017; 140: e20172607.CrossRefGoogle ScholarPubMed
Supplementary material: File

Ladak et al. Supplementary Materials

Ladak et al. Supplementary Materials

Download Ladak et al. Supplementary Materials(File)
File 14.8 KB