143 - Gaps-in-care in patients with moderate to severe congenital heart disease: understanding demographics and clinical outcomes

Poster Number: 143
Publication Number: 143.2909

Background: Gaps in care (GIC) are associated with worse clinical outcomes, placing patients at risk of preventable clinical deterioration.

Objective: We compared patients with congenital heart disease (CHD) who returned to care after a GIC with those who remain lost, and assessed need for intervention for those who returned.

Design/Methods: Patients with moderate to severe CHD, followed in Cardiology Clinic at Boston Children’s Hospital between January 2013 and December 2015, and who subsequently had a GIC (defined as >3.25 years since their last clinic visit) were identified. Reestablished (RE) patients returned for at least 1 clinic visit since their GIC, whereas lost-to-care (LTC) patients have not returned. Patient demographics, including age, race/ethnicity, primary language, need for interpreter, place of residency, and heart disease were compared between groups using Fisher's Exact test, and follow-up interventions were assessed in the RE group.

Results: Of the 1,239 patients with moderate to severe CHD with a GIC, 248 (19.2%) have reestablished care. Both groups were similar in age (p=0.9), race/ethnicity (p=0.1), and place of residence (p=0.3, Table 1). Patients 13-25 years of age were most commonly lost to follow-up. There was a greater proportion of non-English language patients in the LTC group (p=0.02), however, the need for an interpreter did not differ (p=0.9) (Table 1). The heart disease in the 2 groups is shown in Table 1. Notably, conotruncal lesions and single ventricle heart disease occurred at a higher frequency in the RE compared to the LTC group, whereas aortic valve disease was less frequent in the RE group. RE patients required substantial interventions: 12 cardiac catheterizations (5% of RE patients) and 8 surgeries (3% of RE patients), with 4 (2%) having both surgery and catheterization. Procedures included electrophysiologic device revision (4), pulmonary valve replacement (3), relief of right ventricular outflow tract obstruction (2), aortic valve replacement (1), Fontan and Mustard baffle stenting (1 each), coronary artery unroofing (1), pericardiocentesis (1), implantation of a rhythm monitor (1), and assessment of new-onset pulmonary hypertension (1).

Conclusion(s): GIC affect individuals with moderate to severe CHD, with risks for disease progression. Of the 248 patients with moderate to severe CHD that RE care, 16 (6%) required major interventions. Patients who remain LTC are demographically and clinically similar to RE patients. Efforts to reestablish care for those who are lost are vital to prevent unnecessary morbidity.