As congenital heart disease (CHD) patients get older, they become at an increased risk of life-long disease burden. Given the lack of epidemiological and longitudinal data on CHD patients across the life-span, secondary use of administrative health databases (AHD) provides opportunities to address emerging issues in adults with CHD (ACHD) population and to study specific outcomes.

To systematically review all studies using AHD for ACHD research purpose.

We systematically searched PubMed and Embase from January 1, 2006 to December 31, 2015 for studies based on secondary use of AHD and providing new knowledge on ACHD. Of the 2217 identified abstracts, 59 studies were included in this review. They derived from 12 different AHD from 6 different countries. The majority of them were performed in North America [n=32, (55%) from the US; n=17, (28%) from Canada]. Only 4 (7%) were conducted in Europe and 6 (10%) in Asia. No qualified study was published before 2007. From 2006 to 2015, the number of articles grew exponentially. Study designs were various with a majority of cross-sectional and cohort studies. Since the data routinely derived from health insurance claims and cover long period of follow-up, assessing resource utilization and temporal trends were the most reported objectives. Due to their large size, they allow investigating relatively rare topics on a large scale, such as ACHD long-term complications or associated comorbidities. Furthermore, health care systems and thus, AHD differ substantially from one another.

Although not designed for research purposes, AHD are particularly powerful for studying ACHD population because they record all diagnoses on large groups of patients from large areas and for a long period of follow-up. Since CHD is associated with lifelong comorbidities and requires lifelong specialized care, longitudinal studies across the lifespan are the cornerstone in assessing ACHD issues.