Transition of adolescent and young adult patients with childhood-onset chronic kidney disease from pediatric to adult renal services: a nationwide survey in Japan
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Transition of adolescent and young adult (AYA) patients with childhood-onset chronic kidney diseases (C-CKD) from pediatric to adult renal services has received increasing attention. However, information on transition of Japanese patients with C-CKD is limited.
The Transition Medicine Working Group, in collaboration with the Japanese Society for Nephrology, the Japanese Society for Pediatric Nephrology and the Japanese Society of Pediatric Urology, conducted a retrospective cross-sectional study in 2014 on issues concerning the transition of Japanese patients with C-CKD.
Few institutions in Japan had transition programs and/or transition coordinators for patients with C-CKD. Refusal to transfer by patients or their families, lack of concern about transition and inability to decide on transfer were common reasons for non-transfer of patients still followed by pediatric renal services. Around 25 % of patients who had ended or interrupted follow-up by pediatric renal services presented to adult renal services because of symptoms associated with C-CKD. Patients with various types of childhood-onset nephrourological diseases were transferred from pediatric to adult renal services. IgA nephropathy, minimal change nephrotic syndrome and congenital anomalies of the kidney and urinary tract were the most frequent primary kidney diseases in adult patients with C-CKD.
These survey results indicate the need for introduction of transitional care for Japanese AYA patients with C-CKD. Consensus guidelines for the optimal clinical management of AYA patients with C-CKD are required to ensure the continuity of care from child to adult renal services.
KeywordsTransition Childhood-onset chronic kidney disease Adolescent and young adult patients Pediatric renal services Adult renal services
This study was supported in part by a Grant-in-Aid for Intractable Renal Diseases Research, Research on rare and intractable disease, Health and Labour Sciences Research Grants from the Ministry of Health, Labour and Welfare of Japan. The authors thank all patients, families, physicians, and institutes who contributed to the transition survey. The authors also thank the council members of the Japanese Society for Nephrology (JSN), the Japanese Society for Pediatric Nephrology (JSPN), and the Japanese Society of Pediatric Urology (JSPN) for their contributions to data collection. The authors also thank Prof. Yasuo Ohashi, Mr. Masayuki Kurihara, and Ms. Chie Matsuda of the Japan Clinical Research Support Unit (Tokyo) for their help with data management.
Compliance with ethical standards
Conflict of interest
Motoshi Hattori has received a research grant from Astellas Pharma and Chugai Pharma. Masayuki Iwano has received lecture fees from Otsuka Pharma and has a research grant from Otsuka Pharma, Astellas Pharma and Eli Lilly Japan. Hirokazu Okada has received a research grant from Chugai Pharma, Torii Pharma and Takeda Pharma. Yoshio Terada has received a research grant from Chugai Pharma and Daiichi Sankyo Pharma. Shouichi Fujimoto has received a research grant from Chugai Pharma, Dainippon Sumitomo Pharma and Nikkiso. Takao Masaki has received lecture fees from Chugai Pharma and Mitsubishi Tanabe Pharma and has a research grant from Asahi Kasei Pharma, Astellas Pharma, Genzyme, Otsuka Pharma, Kyowa Hakko Kirin, JMS, Mochida Pharma, Mitsubishi Tanabe Pharma, Takeda Pharma, Terumo, Torii Pharma, Daiichi Sankyo Pharma, Bayer Yakuhin and Baxter. Shoichi Maruyama has a research grant from Astellas Pharma, Alexion Pharma, Genzyme, Otsuka Pharma, Kyowa Hakko Kirin, Daiichi Sankyo Pharma, Dainippon Sumitomo Pharma, Takeda Pharma and Torii Pharma. Seiichi Matsuo has a research grant from Astellas Pharma, Alexion Pharma, Daiichi Sankyo Pharma, Otsuka Pharma, Kyowa Hakko Kirin, MSD, Baxter, Dainippon Sumitomo Pharma, Boehringer Ingelheim Japan, Takeda Pharma, Mitsubishi Tanabe Pharma, Teijin Pharm, Mochida Pharma and Torii Pharma. Drs Sako, Honda, Akioka, Ashida, Kawasaki, Kiyomoto, Hirano, and Fujieda have no conflicts of interest to declare.
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