Emotional quality-of-life and patient-reported limitation in sports participation in children with uncorrected congenital and acquired heart disease in healthcare-restricted settings in low- and middle-income countries

Gali S. Kolt, Barbara R. Ferdman, Jessica Y. Choi, Janine Henson, Van Trang Nguyen, Emily A. Farkas, Vinicius J.D.S. Nina, Rachel V.A.H. Nina, Renzo O. Cifuentes, William F. Zeman, John E. Connett, Aubyn Marath

Research output: Contribution to journalArticlepeer-review

Abstract

Background: Little is known about emotional quality-of-life in paediatric heart disease in low- and middle-income countries where the prevalence of uncorrected lesions is high. Research on emotional quality-of-life and its predictors in these settings is key to planning interventions.Methods: Ten-year retrospective cross-sectional study of children aged 6-17 years with uncorrected congenital or acquired heart disease in 12 low- and middle-income countries was conducted. Emotional functioning score of the PedsQL TM 4.0 generic core scale and data on patient-reported limitation in sports participation were collected via in-person interview and analysed using regression analyses.Results: Ninety-four children reported mean emotional functioning scores of 71.94 (SD 25.32) [95% CI 66.75-77.13] with lower scores independently associated with having a parent with a chronic illness or who had died (p = 0.005), having less than three siblings (p = 0.007), and reporting a subjective limitation in carrying an item equivalent to a 4 lb load (p = 0.021). Patient-reported limitation in sports participation at least sometimes was present in 69% and was independently associated with experiencing symptoms at least once a month (p < 0.001).Conclusion: Some of the factors which were associated with better emotional quality-of-life were similar to those identified in previous studies in patients with corrected defects. Patient-reported limitation in sports participation is common. In addition to corrective surgery and exercise, numerous other interventions which are practicable during surgical missions might improve emotional quality-of-life.

Original languageEnglish (US)
Pages (from-to)188-196
Number of pages9
JournalCardiology in the young
Volume30
Issue number2
DOIs
StatePublished - 2020

Bibliographical note

Funding Information:
Financial Support. This research was supported by the National Institute of Heath’s National Center for advancing Translational Science, grant ULTR002494. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Health’s National Center for Advancing Translational Science.

Publisher Copyright:
© The Author(s) 2020. Published by Cambridge University Press.

Keywords

  • CHD
  • Quality-of-life
  • humanitarian surgery
  • low-income
  • middle-income
  • sports participation

PubMed: MeSH publication types

  • Journal Article

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