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The family burden of paediatric heart disease during the chronic phase of illness

Published online by Cambridge University Press:  28 November 2023

Kevin Hummel Open the ORCID record for Kevin Hummel [Opens in a new window] ,
Avital Ludomirsky ,
Lauren Burgunder ,
Minmin Lu ,
Sarah Goldberg ,
Lynn Sleeper ,
Jeffrey Reichman  and
Elizabeth D. Blume
Kevin Hummel*
Affiliation:
Department of Pediatrics, University of Utah, Salt Lake City, UT, USA Intermountain Health Primary Children’s Hospital, Salt Lake City, UT, USA
Avital Ludomirsky
Affiliation:
Department of Cardiology, Childrens Hospital of Philadelphia, Philadelphia, PA, USA
Lauren Burgunder
Affiliation:
Department of Pediatrics, University of Utah, Salt Lake City, UT, USA Intermountain Health Primary Children’s Hospital, Salt Lake City, UT, USA
Minmin Lu
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Sarah Goldberg
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Lynn Sleeper
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Jeffrey Reichman
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Elizabeth D. Blume
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
*
Corresponding author: K. Hummel; Email: kevinhummel@hsc.utah.edu
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Abstract

Background:

CHD is a lifelong condition with a significant burden of disease to patients and families. With increased survival, attention has shifted to longer-term outcomes, with a focus on social determinants of health. Among children with CHD, socioeconomic status is associated with disparities in outcomes. Household material hardship is a concrete measure of poverty and may serve as an intervenable measure of socioeconomic status.

Methods:

A longitudinal survey study was conducted at multiple time points (at acute hospitalisation, then 12–24 months later in the chronic phase) to determine the prevalence of household material hardship among parents of children with advanced heart disease and quality of life during long-term follow-up.

Results:

The analytic cohort was 160 children with a median patient age of 1 year (IQR 1,4) with 54% of patients <2 years. During acute hospitalisation, over one-third of families reported household material hardship (37%), with significantly lower household material hardship in the chronic phase at 16% (N = 9 of 52). For parents reporting household material hardship during acute hospitalisation, 50% had resolution of household material hardship by the chronic phase. Household material hardship-exposed children were significantly more likely to be publicly insured (56% versus 20%, p = 0.03) with lower quality of life than those without household material hardship (64% versus 82%, p = 0.013).

Conclusion:

The burden of heart disease during the chronic phase of illness is high. Household material hardship may serve as a target to ensure equity in the care and outcomes of CHD patients and their families.

Keywords

CHDquality of lifeburden of diseasepatient-reported outcomes
Type
Original Article
Information
Cardiology in the Young , First View , pp. 1 - 7
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Copyright
© The Author(s), 2023. Published by Cambridge University Press

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