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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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Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.

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Acknowledgments

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.

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Authors and Affiliations

  1. Department of Pediatric Nephrology, Tokyo Women’s Medical University, School of Medicine, 8-1 Kawada-cho, Shinjuku-ku, Tokyo, 162-8666, Japan

    Motoshi Hattori & Yuko Akioka

  2. Division of Nephrology, Department of Medicine, School of Medicine, Faculty of Medical Sciences, University of Fukui, Fukui, Japan

    Masayuki Iwano

  3. Division for Clinical Trials, Department of Clinical Research, Center for Clinical Research and Development, National Center for Child Health and Development, Tokyo, Japan

    Mayumi Sako

  4. Department of Nephrology, Tokyo Metropolitan Children’s Medical Center, Tokyo, Japan

    Masataka Honda

  5. Department of Nephrology and General Internal Medicine, Saitama Medical University, Saitama, Japan

    Hirokazu Okada

  6. Department of Pediatrics, Osaka Medical College, Osaka, Japan

    Akira Ashida

  7. Department of Pediatrics, Division of Medical Science, Fukushima Medical University School of Medicine, Fukushima, Japan

    Yukihiko Kawasaki

  8. Department of Community Medical Supports, Tohoku Medical Megabank Organization, Sendai, Japan

    Hideyasu Kiyomoto

  9. Department of Endocrinology, Metabolism and Nephrology, Kochi Medical School, Kochi, Japan

    Yoshio Terada

  10. Department of Pediatrics, Jikei University School of Medicine, Tokyo, Japan

    Daishi Hirano

  11. Department of Pediatrics, Kochi Medical School, Kochi, Japan

    Mikiya Fujieda

  12. Department of Hemovascular Medicine and Artificial Organs, University of Miyazaki, Kochi, Japan

    Shouichi Fujimoto

  13. Department of Nephrology, Hiroshima University Hospital, Hiroshima, Japan

    Takao Masaki

  14. Department of Nephrology, Nagoya University Graduate School of Medicine, Nagoya, Japan

    Shoichi Maruyama & Seiich Mastuo

Authors
  1. Motoshi Hattori
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  2. Masayuki Iwano
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  3. Mayumi Sako
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  4. Masataka Honda
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  5. Hirokazu Okada
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  6. Yuko Akioka
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  7. Akira Ashida
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  8. Yukihiko Kawasaki
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  9. Hideyasu Kiyomoto
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  10. Yoshio Terada
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  11. Daishi Hirano
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  12. Mikiya Fujieda
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  13. Shouichi Fujimoto
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  14. Takao Masaki
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  15. Shoichi Maruyama
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  16. Seiich Mastuo
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Corresponding author

Correspondence to Motoshi Hattori.

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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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Hattori, M., Iwano, M., Sako, M. et al. Transition of adolescent and young adult patients with childhood-onset chronic kidney disease from pediatric to adult renal services: a nationwide survey in Japan. Clin Exp Nephrol 20, 918–925 (2016). https://doi.org/10.1007/s10157-016-1231-6

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  • DOI: https://doi.org/10.1007/s10157-016-1231-6

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