Key result
Mild ACHD complexity is linked to ~4-fold higher odds of care gaps vs severe disease.
Why the study?
Adult congenital heart disease patients risk interruptions in care that are associated with undesired outcomes, but the prevalence, predictors, and barriers to care needed quantification.
Cross-Sectional (n=922)
Yes
Odds Ratio: 4.1
Absolute Event Rate: 59% vs 26%
p-value: p=<0.0001
Captured external expert commentary on this paper, strongest first. Original sources are linked where available.
“We know we need to be diligent in our efforts to get pediatric patients into adult congenital heart disease care. We still have a lot of patients who stop receiving specialized care as they transition and transfer from pediatric to adult care, and a lot of patients who can't access physicians for other reasons like insurance or geography.”
“In the field of congenital heart disease, what we have learned is that these gaps start to happen around teenage years. In our dataset, we start to see gaps starting around the age of 10 and beyond. There are multiple ways in which we can target patients and families to reduce these gaps. One of the biggest components is just education.”
“More than 85% of children born with congenital heart disease reach adulthood. They are likely to experience complications later, yet 61% of these patients beyond the age of 18 do not see a cardiology specialist.”
Nearly half of adult congenital heart disease patients experience a >3-year gap in cardiology care, most commonly starting around age 19 and occurring more frequently in those with mild or moderate disease complexity.
Objective The goal of this project was to quantify the prevalence of gaps in cardiology care, identify predictors of gaps, and assess barriers to care among adult congenital heart disease (ACHD) patients. Background ACHD patients risk interruptions in care that are associated with undesired outcomes. Methods Patients (≥18years) with first presentation to an ACHD clinic completed a survey regarding gaps in, and barriers to, care. Results Among 12 ACHD centers, 922 subjects (54% female) were recruited. A >3 year gap in cardiology care was identified in 42%, with 8% having gaps longer than a decade. Mean age at first gap was 19.9 years. The majority of respondents had more than high school education, and knew their heart condition. Most common reasons for gaps included feeling well, unaware follow-up required, and complete absence from medical care. Disease complexity was predictive of gap in care with 59% of mild, 42% of moderate and 26% of severe disease subjects reporting gaps (p<0.0001). Clinic location significantly predicted gaps (p<0.0001) while gender, race, and education level did not. Common reasons for returning to care were new symptoms, referral from provider, and desire to prevent problems. Conclusions ACHD patients have gaps in cardiology care; the first lapse commonly occurred around 19 years, a time when transition to adult services is contemplated. Gaps were more common among subjects with mild and moderate diagnoses and at particular locations. These results provide a framework for developing strategies to decrease gaps and address barriers to care in the ACHD population.
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Gurvitz et al. (2013) conducted a cross-sectional in Adult congenital heart disease (n=922). Mild congenital heart disease vs. Severe congenital heart disease was evaluated on >3 year gap in cardiology care (OR 4.1, p=<0.0001). Among adults with congenital heart disease, 42% experienced a >3-year gap in cardiology care, with mild and moderate disease complexity predicting a 4.1- and 2.2-fold increased odds of gaps compared to severe disease.
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