Abstract 1867: Adults With Congenital Heart Disease: Who is in Care at Specialized Centers?
Background: There are ~1million adults with congenital heart disease (CHD) in the US with little known about the group to plan for future care. This project describes the population of patients at specialized centers for adult congenital heart disease (SCACHD).
Methods: Administrative data from 1/1/03 – 12/31/05 were obtained from 21/45 (47%) SCACHD. Subjects were identified by diagnosis and physician and collected variables included age, sex, insurance and zip code. CHD diagnosis severity was divided as simple, moderate and complex. Statistics were performed using Stata9.
Results: There were 12453 patients with 32,742 encounters over the 3 years (0.9 visits/patient/year). In the group, median age was 39years (15– 85), 56% were female and patients traveled a median of 28 miles (0 –3385) for visits. Encounters increased yearly at 17–18% per year. CHD diagnosis severity distribution, 51.6% simple, 36% moderate and 12.4% complex was similar to national estimates. Larger centers (>1000 patients) had a higher proportion of simple and a smaller proportion of moderate/complex patients compared to smaller centers (p<0.01). Most patients (54%) had private insurance, 21% had public and 3% had none; however 22% were unknown. Among those with known insurance, type of insurance did not vary with disease severity but varied by age. The group over 50 years had a higher proportion of public and a smaller uninsured group than younger patients (P<0.01).
Conclusions: Only a small percentage of adult CHD patients are in care at SCACHD, but the distribution of disease severity is similar to national estimates. The number of patient encounters is increasing yearly. The majority of patients are middle age and female. Most patients carry private insurance with larger proportions of public with increasing age. Further study is needed to address future workforce and insurance issues for those at SCACHD and to identify those not in SCACHD care.