Why the study?
Many ACHD patients experience medical follow-up interruptions that worsen prognosis, particularly in moderate-to-severe complexity, but the associated risk factors remain unclear.
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In patients with moderate-to-severe adult congenital heart disease, lack of explanation from healthcare providers regarding the necessity of continued hospital visits is the primary independent predictor of follow-up care interruption, with 76.9% of interruptions attributed to physician permission.
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. In this questionnaire-based study, we sent postcards containing a QR code linking to the questionnaire to 1,226 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. 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. 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. • Many patients with adult congenital heart disease (ACHD) experience interruptions in medical follow-up. • Through the questionnaire-based study, we analyzed the factors of follow-up interruption in patients with moderate or severe ACHD complexity. • 19.4% of patients with complex ACHD experienced an interruption in medical follow-up. • 64.0% of these patients discontinued hospital visits between the ages of 15 and 19 years. • Lack of explanation regarding the need for continued hospital visits was an independent predictor of follow-up interruption.
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Maeda et al. (2025) studied this question.
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