Characteristics of patients with adult congenital heart disease treated by non-specialized doctors: The potential loss of follow-up

Abstract

Background: In the treatment of adult congenital heart disease (ACHD), the transfer of patients from pediatric cardiologists to ACHD cardiologists is of relevance. However, little is known about the clinical courses of ACHD patients that have been referred by non-CHD-specialized doctors (n-CSDs). Methods: This retrospective cohort study included 230 patients (average age: 37 AE 15.2 years, male: 97) who were referred to a single specialized ACHD center between April 2016 and July 2019. We compared the characteristics and clinical courses between patients referred by n-CSDs and those referred by CHDspecialized-doctors (CSDs). Results: Overall, 121 (53%) patients were referred by n-CSDs. Among them, 91 (75%) patients were referred by adult cardiologists. Univariate analysis showed that the patients referred by n-CSDs were older than those referred by CSDs (41.6 AE 16.3 vs. 32.0 AE 12.0 years, p < 0.01), were more likely to have simple CHD, and less likely to have severe CHD (27.0% vs. 12.8% and 16.5% vs. 40.4%, respectively, p < 0.01). Patients referred by n-CSDs were also more likely to have a history of loss of follow-up (16.5% vs. 3.7%, p < 0.01) and to require invasive treatments after referral, including cardiac surgeries and transcatheter interventions (47.9% vs. 26.6 %, p < 0.01). Notably, unintended invasive treatments that were not designated by the referring doctors were more frequently required in patients with moderate complexity referred by n-CSDs (50.0% vs. 23.3%, p = 0.02). Conclusions: Patients with moderate CHD complexity referred by n-CSDs are more likely to require unintended invasive treatments. Referrals to specialized ACHD centers may be most beneficial for these patients.

Objective and Personalized Assessment of Disease-Related Knowledge Among Patients With Congenital Heart Disease ― Development and Validation of the Japanese Version of the Leuven Knowledge Questionnaire for Congenital Heart Disease ―

“… 38 In the present study, 72.4% of patients were aware of the need for lifelong cardiac care. Because patients lost to follow-up have a high rate of receiving invasive treatment, 39 , 40 it is necessary to explain the importance of lifelong cardiac care and education about the disease. 27 …”

“…38 In the present study, 72.4% of patients were aware of the need for lifelong cardiac care. Because patients lost to follow-up have a high rate of receiving invasive treatment, 39,40 it is necessary to explain the importance of lifelong cardiac care and education about the disease. 27 have received explanations about their own diseases since they were children; therefore, it is necessary to continue to provide appropriate information to patients.…”

Hospitalizations in Adult Patients With Congenital Heart Disease in Japan

“…Specialist visits have been reported to improve the prognosis of adult patients with CHD (ACHD) 1 and reduce invasive treatments after hospitalization. 2 International studies indicate that the number of hospitalizations of ACHD patients has increased in recent years, in line with the increase in the number of ACHD patients, and hospitalization for heart failure correlates with patient prognosis. 3 In this issue of the Journal, the study by Kuraoka et al 4 extracted all unplanned admissions of patients with ACHD from the Japanese Registry of All Cardiac and Vascular Diseases-Diagnosis Procedure Combination (JROAD-DPC) data (2012-2018) to analyze the characteristics of the admissions, which is valuable information for understanding the broader clinical issues associated with ACHD.…”

JCS 2022 Guideline on Management and Re-Interventional Therapy in Patients With Congenital Heart Disease Long-Term After Initial Repair

“…548 Reportedly, patients who are lost to follow-up or are referred to regional ACHD care centers from non-CHD/ ACHD-specialist facilities have a higher risk of requiring additional invasive treatments. [549][550][551] In each region, closer cooperation is necessary between medical providers. Additionally, the transitional care system needs attention and revision.…”