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. 2023 Mar 7;12(5):e027556.
doi: 10.1161/JAHA.122.027556. Epub 2023 Feb 21.

Examining the Real-Life Journey of Individuals and Families Affected by Single-Ventricle Congenital Heart Disease

Carlos M Mery  1   2 , Andrew Well  1   2   3 , Kate Taylor  1   2 , Kathleen Carberry  3 , José Colucci  4 , Christopher Ulack  3 , Adam Zeiner  4 , Michelle Mizrahi  1   2 , Eileen Stewart  1   5 , Christine Dillingham  1 , Taylor Cook  4 , Arotin Hartounian  4 , Elizabeth McCullum  1   2 , Jeremy T Affolter  1   5 , Heather Van Diest  1   6 , Alexandra Lamari-Fisher  1   7 , Stacey Chang  4 , Scott Wallace  3 , Elizabeth Teisberg  3 , Charles D Fraser Jr  1   2
Affiliations

Examining the Real-Life Journey of Individuals and Families Affected by Single-Ventricle Congenital Heart Disease

Carlos M Mery et al. J Am Heart Assoc. .

Abstract

Background The lifetime journey of patients with single-ventricle congenital heart disease is characterized by long-term challenges that are incompletely understood and still unfolding. Health care redesign requires a thorough understanding of this journey to create and implement solutions that improve outcomes. This study maps the lifetime journey of individuals with single-ventricle congenital heart disease and their families, identifies the most meaningful outcomes to them, and defines significant challenges in the journey. Methods and Results This qualitative research study involved experience group sessions and 1:1 interviews of patients, parents, siblings, partners, and stakeholders. Journey maps were created. The most meaningful outcomes to patients and parents and significant gaps in care were identified across the life journey. A total of 142 participants from 79 families and 28 stakeholders were included. Lifelong and life-stage specific journey maps were created. The most meaningful outcomes to patients and parents were identified and categorized using a "capability (doing the things in life you want to), comfort (experience of physical/emotional pain/distress), and calm (experiencing health care with the least impact on daily life)" framework. Gaps in care were identified and classified into areas of ineffective communication, lack of seamless transitions, lack of comprehensive support, structural deficiencies, and insufficient education. Conclusions There are significant gaps in care during the lifelong journey of individuals with single-ventricle congenital heart disease and their families. A thorough understanding of this journey is a critical first step in developing initiatives to redesign care around their needs and priorities. This approach can be used for people with other forms of congenital heart disease and other chronic conditions. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04613934.

Keywords: human centric design; lifelong outcomes; qualitative research; single‐ventricle congenital heart disease; value‐based health care.

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Figures

Figure 1
Figure 1
Lifelong journey map for an individual with SV‐CHD.The map details the different stages of life for an individual with SV‐CHD, including the most significant events, possible scenarios, transitions, and engagement with the cardiac care system, based on the input from patients and families. SV‐CHD indicates single‐ventricle congenital heart disease. Dell Children's Cardiac Journey Maps © 2023 The University of Texas at Austin Dell Medical School and Ascension.
Figure 2
Figure 2
Most meaningful outcomes for individuals with single‐ventricle congenital heart disease.Dots represent the stages of the journey where the outcomes were predominantly identified.
Figure 3
Figure 3
Most meaningful outcomes for parents of individuals living with SV‐CHD.Dots represent the stages of the journey where the outcomes were predominantly identified. SV‐CHD indicates single‐ventricle congenital heart disease.
Figure 4
Figure 4
Identified gaps in care.Dots represent the stages of the journey where the outcomes were predominantly identified. CHD indicates congenital heart disease; and SV‐CHD, single‐ventricle CHD.
See this image and copyright information in PMC

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