日本小児循環器学会雑誌 Pediatric Cardiology and Cardiac Surgery

Background: Appropriate medical care throughout the lifetime of patients with congenital heart disease (CHD) requires both the efforts of medical treatment systems and the promotion of patients’ understanding of their diseases. The Department of Public Relations of the Japanese Society for Pediatric Cardiology and Cardiac Surgery (JSPCCS) has been providing information to the public to promote understanding of CHD through its website and social networking services (SNS). This study evaluated the effectiveness of information dissemination and assessed the information needs of patients and their families by analyzing access to the JSPCCS public website and its official SNS.

Methods: We analyzed the number of website views, search terms, SNS user responses, and user characteristics from August 1, 2022 to November 30, 2024.

Results: The total number of website views during the study period was 323,271. The main search terms were “Fontan operation” (2,069 searches), “ventricular septal defect, neonates, what to watch out for” (1,745), “ventricular septal defect” (1,378), and “cyanosis” (922). As of November 30, 2024, the official X account had 3,686 followers, and the Instagram account had 2,710 followers. Of the Instagram followers, 72% were 25–44 years of age and 79% were female.

Conclusion: Due to the JSPCCS’s continuous online activity, the number of SNS followers and website visits increased. A high need for information on diseases like CHD with high prevalence and higher severity, symptoms in children, and medical conditions in adulthood and beyond were suggested.