PMID- 29084799
OWN - NLM
STAT- MEDLINE
DCOM- 20180716
LR  - 20220310
IS  - 2044-6055 (Electronic)
IS  - 2044-6055 (Linking)
VI  - 7
IP  - 10
DP  - 2017 Oct 30
TI  - Health-related quality of life in congenital heart disease surgery patients in 
      Pakistan: protocol for a mixed-methods study.
PG  - e018046
LID - 10.1136/bmjopen-2017-018046 [doi]
LID - e018046
AB  - INTRODUCTION: Reduced health-related quality of life (HRQOL) has been reported in 
      postoperative patients with congenital heart disease (CHD). However, there is a 
      paucity of data from low-income and middle-income countries (LMIC). Differences 
      in sociodemographics and sociocultural contexts may influence HRQOL. This 
      protocol paper describes a study exploring HRQOL in surgical patients with CHD 
      from a tertiary hospital in Pakistan. The study findings will assist development 
      of strategies to improve HRQOL in a resource-constrained context. METHODS AND 
      ANALYSIS: This prospective, concurrent triangulation, mixed-methods study aims to 
      compare HRQOL of postsurgery patients with CHD with age-matched healthy siblings 
      and to identify HRQOL predictors. A qualitative component aims to further 
      understand HRQOL data by exploring the experiences related to CHD surgery for 
      patients and parents. Participants include patients with CHD (a minimum of n~95) 
      with at least 1-year postsurgery follow-up and no chromosomal abnormality, their 
      parents and age-matched, healthy siblings. PedsQL 4.0 Generic Core Scales, PedsQL 
      Cognitive Functioning Scale and PedsQL 3.0 Cardiac Module will measure HRQOL. 
      Clinical/surgical data will be retrieved from patients' medical files. Student's 
      t-test will be used to compare the difference in the means of HRQOL between CHD 
      and siblings. Multiple regression will identify HRQOL predictors. A subsample of 
      enrolled patients (n~20) and parents (n~20) from the quantitative arm will be 
      engaged in semistructured qualitative interviews, which will be analysed using 
      directed content analysis. Anticipated challenges include patient recruitment due 
      to irregular follow-up compliance. Translation of data collection tools to the 
      Urdu language and back-translation of interviews increases the study complexity. 
      ETHICS AND DISSEMINATION: Ethics approval has been obtained from The Aga Khan 
      University, Pakistan (3737-Ped-ERC-15). Study findings will be published in 
      peer-reviewed journals and presented at national and international conferences.
CI  - (c) Article author(s) (or their employer(s) unless otherwise stated in the text of 
      the article) 2017. All rights reserved. No commercial use is permitted unless 
      otherwise expressly granted.
FAU - Ladak, Laila Akbar
AU  - Ladak LA
AD  - Charles Perkins Centre, Faculty of Nursing, The University of Sydney, Camperdown, 
      New South Wales, Australia.
FAU - Hasan, Babar Sultan
AU  - Hasan BS
AD  - Department of Pediatrics and Child health, The Aga Khan University, Karachi, 
      Sindh, Pakistan.
FAU - Gullick, Janice
AU  - Gullick J
AD  - Faculty of Nursing, The University of Sydney, Camperdown, New South Wales, 
      Australia.
FAU - Awais, Khadija
AU  - Awais K
AD  - Medical College, The Aga Khan University, Karachi, Sindh, Pakistan.
FAU - Abdullah, Ahmed
AU  - Abdullah A
AD  - Medical College, The Aga Khan University, Karachi, Sindh, Pakistan.
FAU - Gallagher, Robyn
AU  - Gallagher R
AD  - Charles Perkins Centre, Faculty of Nursing, The University of Sydney, Camperdown, 
      New South Wales, Australia.
AD  - Faculty of Health, University of Technology, Sydney, New South Wales, Australia.
LA  - eng
PT  - Journal Article
DEP - 20171030
PL  - England
TA  - BMJ Open
JT  - BMJ open
JID - 101552874
RN  - 0 (Saccharomyces cerevisiae Proteins)
RN  - EC 2.1.1.- (Methyltransferases)
RN  - EC 2.1.1.- (TAE1 protein, S cerevisiae)
SB  - IM
MH  - Adolescent
MH  - Adult
MH  - Child
MH  - Child, Preschool
MH  - *Developing Countries
MH  - Female
MH  - Heart Defects, Congenital/*surgery
MH  - Humans
MH  - Language
MH  - Male
MH  - Methyltransferases
MH  - Pakistan
MH  - Parents
MH  - *Postoperative Complications
MH  - Prospective Studies
MH  - *Quality of Life
MH  - Research Design
MH  - Saccharomyces cerevisiae Proteins
MH  - Siblings
MH  - Socioeconomic Factors
MH  - Young Adult
PMC - PMC5665301
OTO - NOTNLM
OT  - cardiac surgery
OT  - congenital heart disease
OT  - paediatric cardiology
COIS- Competing interests: None declared.
EDAT- 2017/11/01 06:00
MHDA- 2018/07/17 06:00
PMCR- 2017/10/30
CRDT- 2017/11/01 06:00
PHST- 2017/11/01 06:00 [entrez]
PHST- 2017/11/01 06:00 [pubmed]
PHST- 2018/07/17 06:00 [medline]
PHST- 2017/10/30 00:00 [pmc-release]
AID - bmjopen-2017-018046 [pii]
AID - 10.1136/bmjopen-2017-018046 [doi]
PST - epublish
SO  - BMJ Open. 2017 Oct 30;7(10):e018046. doi: 10.1136/bmjopen-2017-018046.