Challenges of intra-institutional transfer of care from paediatric to adult congenital cardiology: the need for retention as well as transition

Abstract

Within a single institution, with shared information systems, administrations, and care providers, successful transfer from paediatric to adult congenital cardiology was still poor. Efforts for successful retention are just as vital as those for transfer.

Short-term outcomes following implementation of a dedicated young adult congenital heart disease transition program

“…Despite having an organized transition clinic and qualified ACHD care, our program's successful transfer rate remained relatively low. However, this result is similar to the experience reported by Bohun et al where patients were transferred from pediatric to adult providers within the same center, but without a formal transition clinic to facilitate transfer . Thus, while having qualified providers and accredited programs are necessary, as single factors they are insufficient to guarantee successful transfer.…”

“…In our study, patients with severe forms of CHD were more likely to be successfully transferred to the ACHD clinic when compared to those with other CHD types. This phenomenon, also seen in other referenced studies, is likely due to the fact that those with severe CHD are likely to be followed with greater frequency during early childhood and adolescence, which positively reinforces the necessity for ongoing care in adulthood . The process of transitioning care likely begins at an earlier age in these individuals, and these patients and their families are likely more informed and prepared regarding the importance of long‐term ACHD care as well.…”

“…Further subanalysis of the different public plans-state subsidized with or without managed care (Medi-Cal versus Medi-Cal HMO)-demonstrated no advantage to either. Bohun et al also found that insurance status correlated with successful follow-up in their study 12. The impact of private versus public insurance on transfer success may relate to differences in access to care at appropriate ACHD referral centers due to contracts and/or referral flexibility.…”

“…In 2013, the multicenter HEART‐ACHD study found gaps in care (defined as >3 years without follow‐up) in 42% of patients presenting for the first time to one of 12 North American ACHD referral centers overall, with a range of 22%‐61% at individual centers across all geographic parts of the continent . Finally, in 2016, Bohun et al found a 34% successful transfer rate, despite synchronizing factors thought to facilitate a smooth transition at the Oregon ACHD care program …”

“…This phenomenon, also seen in other referenced studies, is likely due to the fact that those with severe CHD are likely to be followed with greater frequency during early childhood and adolescence, which positively reinforces the necessity for ongoing care in adulthood. 8,11,12 The process of transitioning care likely begins at an earlier age in these individuals, and these patients and their families are likely more informed and prepared regarding the importance of longterm ACHD care as well. Those with mild CHD, on the other hand, tend to be followed less frequently as outpatients and may be asymptomatic, both of which may negatively impact the eventual establishment of CHD care in adulthood.…”