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.

Over 90% of children with CHD survive into adulthood and require lifelong cardiology care. Delays in care predispose patients to cardiac complications. We sought to determine the time interval to accessing adult CHD care beyond what was recommended by the referring paediatric cardiologist (excess time) and determine risk factors for prolonged excess time.

Retrospective cohort study including all patients in the province of Alberta, Canada, age 16–18 years at their last paediatric cardiology visit, with moderate or complex lesions. Excess time between paediatric and adult care was defined as the interval (months) between the final paediatric visit and the first adult visit, minus the recommended interval between these appointments. Patients whose first adult CHD appointment occurred earlier than the recommended interval were assigned an excess time of zero.

We included 286 patients (66% male, mean age 17.6 years). Mean excess time was 7.9 ± 15.9 months. Twenty-nine (10%) had an excess time > 24 months. Not having a pacemaker (p = 0.03) and not needing cardiac medications at transfer (p = 0.02) were risk factors for excess time >3 months. Excess time was not influenced by CHD complexity.

The mean delay to first adult CHD appointment was almost 8 months longer than recommended by referring paediatric cardiologists. Not having a pacemaker and not needing cardiac medication(s) were risk factors for excess time > 3 months. Greater outpatient resources are required to accommodate the growing number of adult CHD survivors.

To promote good health in patients with congenital heart disease (CHD), prevention of gaps in care is essential, as adverse prognosis is associated with care gaps. A well-organised, formal transition programme may help prevent loss to follow up after leaving paediatric care. To inform the development of a transition programme, we investigated factors associated with care gaps in adults with CHD.

Between 15 October 2018 and 15 November 2019 data on patient characteristics and patient experiences with transition-related education, difficulties, and gaps in care were collected and assessed in 87 adults with CHD. Two groups (with gaps in care versus without gaps) were compared to identify informative differences using chi-squared, Fisher’s exact tests, or Wilcoxon rank-sum tests. To assess the relationship between care gaps and identified variables, factors with significant difference (p < 0.05) in bivariate analyses were employed as covariates in multivariable logistic regression analysis.

About half of the study cohort reported having gaps in care. In a multivariate model, patients having thorough discussion about the importance of receiving adult care in paediatric care were 70% less likely to experience gaps (odds ratio 0.303, 95% CI 0.14, 0.66). Forty-seven percent of patient-perceived barriers to transitioning originated from negative feelings associated with transfer.

Gaps in care are highly prevalent in adults with CHD. For a transition programme to be most effective, curriculum development may need to consider the differential impact of various factors and target areas to mitigate the psychological stress associated with transfer.