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Gaps in care common in adults with congenital heart disease
Adults with congenital heart disease often experienced gaps in cardiac care, particularly during the transition period from pediatric to adult services, new data suggest.
To assess the prevalence and duration of gaps in care and the barriers experienced by adults with congenital heart disease, the researchers conducted a multicenter, prospective, cross-sectional study involving 922 patients (54% women) aged at least 18 years from 12 congenital heart disease centers. They administered a questionnaire focusing on gaps in cardiology care to these patients upon their first visit to the centers.
According to study results, most patients had more than a high school education and were aware of their disease. Forty-two percent of patients experienced a more than 3-year gap in cardiology care, and 8% had gaps lasting longer than a decade. The first gap in care occurred at a mean age of 19.9 years. When asked about reasons for gaps, respondents most commonly cited feeling well, being unaware that follow-up was necessary and complete absence of medical care.
The researchers also noted that disease severity was predictive of a gap in care. Fifty-nine percent of patients with mild, 42% with moderate and 26% with severe disease reported gaps (P<.0001). In addition, clinic location was significantly predictive of gaps (P<.0001). Sex, race and education level, however, did not appear to be associated with gaps in care.
New symptoms, referral from a provider and the desire to prevent problems were common prompts for returning to care, according to the study.
“Gaps were more common among those respondents with anatomic diagnoses that were classified to be of moderate and mild complexity and from respondents receiving care at particular geographic clinic locations,” the researchers wrote. “These results provide a foundation for further study and for consideration of public health strategies to decrease barriers to, as well as gaps in, cardiology care for the adult [congenital heart disease] population.”
Disclosure: One of the researchers reports receiving honorarium from Actelion Pharmaceuticals.