There are more adults than children with congenital heart disease in Canada. Adult Congenital Heart Disease (ACHD) patients are at increased risk of poor outcomes compared to the age matched population and require ongoing specialized care to optimize well-being and survival. Data regarding ACHD clinic evaluation, diagnostic and procedures in Canada has not been well characterized. The purpose of this study is to characterize the current quality of care for ACHD patients.
Methods and Results
A survey detailing infrastructure and human resources was sent to all CACH ACHD centers across Canada. The data responses were compared to the previously published data from 2007 to evaluate the evolution in provision of care over the past 15 years. All centers responded (n=16). The total number of active (defined as booked for follow-up) ACHD patients followed in ACHD clinics in Canada is 34 208 (previously 21 897). Median number of patients per clinic = 2400 (IQR: 1050, 2875) (previously 1650; IQR 600,2246). A mean of 6.3±2.4 (adult trained and pediatric trained) MDs are affiliated with each center (previously 7±3). Of the 95 affiliated MDs 46% (n=44) received formal ACHD training (previously 27% (n=22) with ACHD training). For the 2020 calendar year, median number of patients visits per site was 977(IQR:498,1642), (previously 581, (IQR: 241,1333)). Mean ACHD specific procedural volumes, per site, for 2020 compared previous: diagnostic catheterization = 108 +/-250 (previously 21+/-33), percutaneous interventions = 31+/-39 (previously 27+/-28), surgery = 28+/-36, (previously 26+/-30).
Over the past 15 years the number of ACHD patients in Canada receiving specialized care has increased by over 56%. Compared to a decade prior the number of physicians with formal CHD training has increased and there are now more physicians with dedicated training providing care to ACHD. More patients are being evaluated in clinic and undergoing diagnostic and therapeutic procedures.