Factors associated with a lower chance of having gaps in care in adult congenital heart disease

Abstract

Background: 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. Methods: 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. Results: 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. Conclusion: 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.

Adolescents and Adults With Congenital Heart Disease: Why Are They Lost to Follow-Up?

“…24,29 It is not uncommon for some adolescents and ACHD patients to be unaware of the need for long-term follow-up especially if they remain asymptomatic. 13,19,33,34 Transition programs from the outset need to ensure that patients understand the importance of follow-up and the ramifications of lapses in care. Notably, Ko et al found that by simply emphasizing the importance of receiving ongoing care into adulthood, patients were 70% less likely to experience a lapse in care.…”

“…Notably, Ko et al found that by simply emphasizing the importance of receiving ongoing care into adulthood, patients were 70% less likely to experience a lapse in care. 33…”

“…Notably, Ko et al found that by simply emphasizing the importance of receiving ongoing care into adulthood, patients were 70% less likely to experience a lapse in care. 33 To ensure engagement in such a process, it is helpful to understand what patients of this age group find relevant. Lopez et al found that some adolescents felt information regarding long-term implications of their disease such as career options, family planning, and long-term complications were inadequately addressed.…”

Trends in Gaps of Care for Congenital Heart Disease Patients: Implications for Social Determinants of Health and Child Opportunity Index

“…Despite advances in clinical management and a substantial decrease in mortality, CHD patients continue to face significant morbidity and poor long-term outcomes associated with GIC. 26 Recognized as an independent predictor of mortality, GIC are 3 times more likely to lead to urgent interventions, patients receiving a new cardiac diagnosis, and patients presenting symptomatically. 26 Our analysis reveals that GIC in certain subpopulations are ongoing and increasing.…”

“…26 Recognized as an independent predictor of mortality, GIC are 3 times more likely to lead to urgent interventions, patients receiving a new cardiac diagnosis, and patients presenting symptomatically. 26 Our analysis reveals that GIC in certain subpopulations are ongoing and increasing. In the absence of interventions that proactively incorporate or focus specifically on SDOH factors in susceptible subpopulations of CHD patients, the trajectory of these unfavorable outcomes is unlikely to be reversed.…”