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Prioritising gaps in care in the real-life journey of single ventricle CHD

Published online by Cambridge University Press:  31 July 2025

Maria E. Hoyos Open the ORCID record for Maria E. Hoyos [Opens in a new window] ,
Mario O’Connor ,
Carlos M. Mery ,
Kathleen Carberry ,
Alexandra Lamari-Fisher Open the ORCID record for Alexandra Lamari-Fisher [Opens in a new window] ,
Eileen Steward ,
Christine Dillingham ,
Charles D. Fraser  and
Andrew Well
Maria E. Hoyos*
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA UT Health Austin and Dell Children’s Medical Center, Texas Center for Pediatric and Congenital Heart Disease, Austin, TX, USA
Mario O’Connor
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA UT Health Austin and Dell Children’s Medical Center, Texas Center for Pediatric and Congenital Heart Disease, Austin, TX, USA
Carlos M. Mery
Affiliation:
Department of Pediatric Cardiac Surgery, Vanderbilt University Medical Center, Nashville, TN, USA
Kathleen Carberry
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA
Alexandra Lamari-Fisher
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA UT Health Austin and Dell Children’s Medical Center, Texas Center for Pediatric and Congenital Heart Disease, Austin, TX, USA
Eileen Steward
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA UT Health Austin and Dell Children’s Medical Center, Texas Center for Pediatric and Congenital Heart Disease, Austin, TX, USA
Christine Dillingham
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA UT Health Austin and Dell Children’s Medical Center, Texas Center for Pediatric and Congenital Heart Disease, Austin, TX, USA
Charles D. Fraser
Affiliation:
Dell Medical School, The University of Texas at Austin, Austin, TX, USA UT Health Austin and Dell Children’s Medical Center, Texas Center for Pediatric and Congenital Heart Disease, Austin, TX, USA
Andrew Well
Affiliation:
Department of Pediatric Cardiac Surgery, Vanderbilt University Medical Center, Nashville, TN, USA
*
Corresponding author: Maria E. Hoyos; Email: me.hoyos@utexas.edu
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Abstract

Background:

Single ventricle CHD requires lifelong care, yet its broader impact on patients and families remains unclear. Engaging patients in care improvement can strengthen relationships and outcomes.

Objectives:

This study evaluates how individuals with single ventricle CHD prioritise gaps in care based on personal and family impact.

Methods:

Using Mery et al.’s identified care gaps, a survey was distributed to parents of children with single ventricle CHD and adults with single ventricle CHD in English or Spanish. Participants rated each gap from 1(not important) to 10(extremely important), with a “Not Applicable” option. Responses were analysed using median, weighted, and total rating scores. Sociodemographic data were examined, and univariate analysis and a race/ethnicity and insurance matrix were conducted on parent responses.

Results:

Among 36 complete responses, 30(83.3%) were parents and 6(16.7%) patients. Most parents were female(29,96.7%), White non-Hispanic(24,80.0%), with 17(6.7%) having privately insured children. Median child age was 6.5[interquartile range: 3.0–12.8] years, and 55.3% had Hypoplastic Left Heart Syndrome. The highest-rated gap was “Uncertainty of prognosis in adulthood” (9.5[interquartile range: 8.0–10.0]). The lowest was “Pregnancy termination presented repeatedly” (1.0[interquartile range: 1.0–7.0]). Non-White parents rated “Transition to adult healthcare” (p = 0.017) and “Navigating resources” (p = 0.037) higher. Patients (median age 33.0 years) prioritised “Rescheduling surgical procedures” and “Transition to adult healthcare” (both 10.0). “Support in family planning” had the highest total rating score(12). The lowest-rated was “Limited guidance on transition to adolescence” (0.0[interquartile range:0.0–0.0]).

Conclusions:

Patients and families prioritise care gaps differently. Aligning their perspectives with clinical expertise can guide tailored solutions to improve outcomes for single ventricle CHD patients.

Keywords

single ventriclegaps in carepatient-centred carehealthcare disparitiescare co-design

Information

Type
Original Article
Information
Cardiology in the Young , Volume 35 , Issue 9 , September 2025 , pp. 1871 - 1880
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Copyright
© The Author(s), 2025. Published by Cambridge University Press

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