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

BACKGROUND: Transferring patients with CHD from paediatric to adult care has been challenging, especially across institutions. Within a single institution, some issues such as provider interaction, information exchange, or administrative directives should not play a significant role, and should favour successful transfer. OBJECTIVE: We studied patients who were eligible for transfer to the adult congenital heart disease service within our institution in order to identify factors associated with successful transfer to adult care providers versus failure to transfer. METHODS: Patients above18 years of age with CHD who were seen by paediatric cardiologists before January, 2008 were identified through a patient-care database. Records were reviewed to determine follow-up between 2008 and 2011 and to determine whether the patient was seen in the adult congenital cardiology clinic, paediatric cardiology clinic, or had no follow-up, and statistical comparisons were made between groups. RESULTS: After reviewing 916 records, 229 patients were considered eligible for transition to adult congenital cardiology. Of these, 77 (34%) were transferred successfully to adult congenital cardiology, 47 (21%) continued to be seen by paediatric cardiologists, and 105 (46%) were lost to follow-up. Those who transferred successfully differed with regard to complexity of diagnosis, insurance, and whether a formal referral was made by a paediatric care provider. Only a small fraction of the patients who were lost to follow-up could be contacted. CONCLUSION: 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.

A population-based study of cardiac malformations and outcomes associated with dextrocardia.

The incidence of dextrocardia and its associated cardiac and noncardiac malformations is not known. There is inadequate information about outcomes to counsel parents about prognosis. A retrospective review of all diagnoses of dextrocardia due to embryologic development at a tertiary care hospital from 1985 to 2001 was performed. Eighty-one cases were identified (48 antenatally). The incidence of dextrocardia was estimated to be 1 in 12,019 pregnancies. Twenty-seven cases were situs solitus, 30 situs inversus, and 24 situs ambiguous or isomerism. Cardiac malformations were found in 26 of 27 cases of situs solitus, 7 of 30 cases of situs inversus, and 24 of 24 cases of isomerism. Noncardiac malformations were identified in 10 of 27 cases of situs solitus, 6 of 30 cases of situs inversus, and 14 of 24 cases of isomerism. Twelve pregnancies were terminated, 3 fetuses were stillborn, and 2 women chose compassionate care. All terminated fetuses were diagnosed with dextrocardia before termination, and all had >1 cardiac anomaly; 7 also had noncardiac anomalies. There were 43 subjects in the intention-to-treat group (20 situs solitus, 10 solitus inversus, 13 isomerism). Thirty-two had >or=1 cardiac operation, and 21 had >or=3. Thirty-nine subjects were alive at most recent follow-up. In conclusion, the incidence of dextrocardia was 1 in 12,019 pregnancies. In conclusion, in our cohort, the numbers of cases of situs solitus, situs inversus, and isomerism were similar. Cardiac and noncardiac malformations were most common in the isomerism group. Cardiac malformations were often complex in the situs solitus and isomerism groups. Ninety-one percent of those in the intention-to-treat cohort were alive at follow-up.