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.

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

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.

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]).

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.