Predictors of interruption in medical follow-up among patients with complex adult congenital heart disease.

Background: Many patients with adult congenital heart disease (ACHD) experience interruptions in medical follow-up, leading to a worsening life prognosis, particularly among those with moderate-to-severe complexity. However, the risk factors associated with interruption remain unclear. Methods: In this questionnaire-based study, we sent postcards containing a QR code linking to the questionnaire to 1226 patients who underwent surgery for congenital heart disease between 1997 and 2023 and were >15 years old at registration. We analyzed the causative factors for interruption in medical follow-up among patients with moderate or severe ACHD complexity. Results: Of 785 patients who received questionnaire, 211 patients provided valid responses. Among them, 144 patients with moderate-to-severe complexity were included in the analysis to identify factors associated with interruption in medical follow-up. We found that 19.4 % of patients experienced interruptions. 64.0 % of patients discontinued hospital visits between 15 and 19 years old. Multivariate analysis revealed that the perceived need for continued hospital visits was an independent factor associated with interruption. Conclusions: Our study identified inadequate communication regarding the necessity of continued follow-up as an independent factor contributing to the interruption of medical care. These findings highlight the need for better education for both ACHD specialists and general healthcare providers.