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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

Published online by Cambridge University Press:  05 February 2020

Gali S Kolt Open the ORCID record for Gali S Kolt [Opens in a new window] ,
Barbara R Ferdman ,
Jessica Y Choi ,
Janine Henson ,
Van-Trang Nguyen ,
Emily A Farkas ,
Vinicius JDS Nina ,
Rachel VAH Nina ,
Renzo O CiFuentes  and
William F Zeman
...Show all authors
Gali S Kolt*
Affiliation:
Pediatric Cardiology Department, Great Ormond Street Hospital, London, UK
Barbara R Ferdman
Affiliation:
CardioStart International, Tampa, FL, USA
Jessica Y Choi
Affiliation:
Duke Global Health Institute, Duke University, Durham, NC, USA
Janine Henson
Affiliation:
CardioStart International, Tampa, FL, USA
Van-Trang Nguyen
Affiliation:
CardioStart International, Tampa, FL, USA
Emily A Farkas
Affiliation:
ThedaCare, Appleton, WI, USA
Vinicius JDS Nina
Affiliation:
Cardiovascular Unit, Universidade Federal do Maranhao (UFMA), Sao Luis, MA, Brazil
Rachel VAH Nina
Affiliation:
Cardiovascular Unit, Universidade Federal do Maranhao (UFMA), Sao Luis, MA, Brazil
Renzo O CiFuentes
Affiliation:
CardioStart International, Tampa, FL, USA
William F Zeman
Affiliation:
CardioStart International, Tampa, FL, USA
John E Connett
Affiliation:
Division of Biostatistics in School of Public Health and Clinical and Translational Science Institute (CTSI), University of Minnesota, Minneapolis, MN, USA
Aubyn Marath
Affiliation:
CardioStart International, Tampa, FL, USA
*
Author for correspondence: Dr Gali S Kolt, Pediatric Cardiology Department, Great Ormond Street Hospital, 22 Compton Terrace, London, N1 2UN, UK. +44 (0)7488422035. E-mail: [email protected]
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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.

Keywords

Quality-of-lifeCHDlow-incomemiddle-incomehumanitarian surgerysports participation
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 2 , February 2020 , pp. 188 - 196
Copyright
© The Author(s) 2020. Published by Cambridge University Press

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