O1029: The Challenging Lives of Individuals and Families Affected by Single-ventricle Congenital Heart Disease: Lessons Learned

Background: Despite improvements in survival of individuals with single-ventricle congenital heart disease (SV-CHD), the challenging lifetime journey of patients and their families is incompletely understood. Of central importance, the long-term outcomes that are most meaningful to patients and families are unclear. The goal of this qualitative, human-centered design study was to map the lifetime journey of individuals with SV-CHD and their families, identify the outcomes that matter most to them, and define the most significant challenges in their lives as a first step to redesigning care.

Methods: This study involved Experience Group sessions (lightly facilitated group meetings that bring together individuals with common medical situations and place them as experts of their lived experience), in-depth 1:1 interviews, and a series of workshops including patients, parents, siblings, partners, health care providers, and other stakeholders. Inductive qualitative analysis and human-centered design thinking were used to create journey maps (visual representations of the lived experience with a focus on what individuals are thinking, feeling, and doing), identify the outcomes that matter most to patients and families, and define the most significant gaps in care across their life journey.

Results: A total of 142 participants from 79 distinct affected families and an additional 28 clinicians/stakeholders were included. A lifelong journey map(JM) (Figure) and 5 detailed life-stage (prenatal, interstage, childhood, adolescence, and adulthood) JMs were created. Ten most meaningful patient-centered outcomes were identified for patients, and 14 for parents(Table). Multiple (n=27) gaps in care were identified in communication (e.g., messaging across providers, lack of compassion/empathy), transitions across life stages (e.g., transition to home, school, and adulthood), patient and family support (e.g., lack of sense of partnership, struggles with uncertainty), structural deficiencies in care (e.g, affordable health insurance, limited knowledge by other providers), and education (e.g, lack of relevant and accurate information, education of non-medical providers). Of the gaps identified, 11 (41%) spanned all life stages. Many additional insights were gained such as the realization that some patients did not develop long-term goals since they had been told they would not survive to adulthood. For detailed maps and gaps in care, see: coragemap.com.

Conclusion: The life journey of individuals and families with SV-CHD is defined by many challenges, unmet needs, and critical gaps that are not well characterized and transcend usual clinical encounters. Mapping their journey and gaining a deep understanding of their lived experiences are a crucial first step in redesigning care in a way that is patient- and family-centered. The qualitative, human-centered methodologies used in this study are generalizable to other congenital heart disease and pediatric chronic conditions. This initiative moves our field closer toward redesigning cardiac care in a way that is empathic, patient-centered, value-based, and focused on the outcomes that matter most to patients and families.