Quality of Life in Ugandan Children and Young Adults After Surgery for Congenital Heart Disease: Mixed Methods Approach

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dc.contributor.authorSearchinger, Chloe
dc.contributor.authorNalubwama, Hadija
dc.contributor.authorPulle, Jafesi
dc.contributor.authorMehta, Rittal
dc.contributor.authorTumwbaze, Hilda
dc.contributor.authorKyarimpa, Rachel
dc.contributor.authorMwima, Rachel
dc.contributor.authorAtukunda, Emily
dc.contributor.authorBua, Bobson
dc.contributor.authorSarnacki, Rachel
dc.contributor.authorSherman, Meredith G
dc.contributor.authorOketcho, Michael
dc.contributor.authorZimmerman, Meghan
dc.contributor.authorNakitto, Miriam
dc.contributor.authorLongenecker, Chris T
dc.contributor.authorWebel, Allison
dc.contributor.authorScheel, Amy
dc.contributor.authorLwabi, Peter S
dc.contributor.authorSable, Craig A
dc.date.accessioned2024-04-23T12:58:18Z
dc.date.available2024-04-23T12:58:18Z
dc.date.issued2024-04
dc.descriptionThe additional files for this article can be found as follows: Supplemental Table HRQOL Scores by Location of Surgery. DOI: https://doi.org/10.5334/gh.1320.s1 Supplemental Appendices Appendix 1 to 4. DOI: DOI: https://doi.org/10.5334/gh.1320.s2en_US
dc.description.abstractHealth-related quality of life (HRQOL) is a critical issue for patients undergoing surgery for congenital heart disease (CHD) but has never been assessed in a low-income country. We conducted a cross-sectional mixed methods study with age-matched healthy siblings serving as controls at the Uganda Heart Institute. One-hundred fifteen CHD pediatric and young adult patients and sibling control participants were recruited. Health-related quality of life was assessed using the Pediatric Quality of Life Inventory Version 4.0 in participants ages 5-17 and 36-Item Short Form Survey for young adults aged 18-25. A subset of 27 participants completed face-to-face interviews to supplement quantitative findings. Eighty-six pediatric (age 5-17) sibling and parent pairs completed Peds QOL surveys, and 29 young adult (age 18-25) sibling pairs completed SF-36 surveys. One third of patients had surgery in Uganda. Ventricular septal defects and tetralogy of Fallot were the most common diagnoses. Health-related quality of life scores in patients were lower across all domains compared to control participants in children. Reductions in physical and emotional domains of HRQOL were also statistically significant for young adults. Variables associated with lower HRQOL score on multivariate analysis in pediatric patients were younger age in the physical and emotional domains, greater number of surgeries in the physical domain and surgery outside Uganda in the school domain. The only predictor of lower HRQOL score in young adults was surgery outside Uganda in the social domain. Qualitative interviews identified a number of themes that correlated with survey results including abandonment by family, isolation from peers and community, financial hardship and social stigmatization. Health-related quality of life was lower in Ugandan patients after CHD surgery than siblings. Younger patients and those who had surgery outside of Uganda had lower HRQOL. These data have important implications for patients undergoing CHD surgery in LMIC and have potential to inform interventions.en_US
dc.description.sponsorshipThis project was funded in part through the Global Health Initiative at Children’s National Hospital, Washington, DC.en_US
dc.identifier.citationSearchinger, Chloe, Hadija Nalubwama, Jafesi Pulle, et al. 'Quality of Life in Ugandan Children and Young Adults After Surgery for Congenital Heart Disease: Mixed Methods Approach', Global Heart, vol. 19/no. 1, (2024), pp. 36.en_US
dc.identifier.issnISSN 2211-8160
dc.identifier.issnEISSN 2211-8179
dc.identifier.urihttps://nru.uncst.go.ug/handle/123456789/9486
dc.language.isoenen_US
dc.publisherPublic Library of Scienceen_US
dc.subjectHealth-related quality of life; Low-income country; congenital heart defecten_US
dc.titleQuality of Life in Ugandan Children and Young Adults After Surgery for Congenital Heart Disease: Mixed Methods Approachen_US
dc.typeArticleen_US
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