A consensus statement on health-care transition for childhood-onset inflammatory bowel disease patients
Corresponding Author
Hideki Kumagai
Department of Pediatrics, Jichi Medical University, Shimotsuke, Tochigi, Japan
Correspondence: Hideki Kumagai, MD PhD, Department of Pediatrics, Jichi Medical University, 3311-1 Yakushiji, Shimotsuke, Tochigi 329-0498, Japan. Email: [email protected]
Search for more papers by this authorToshiaki Shimizu
Department of Pediatrics, Faculty of Medicine, Juntendo University, Bunkyo-ku, Tokyo, Japan
Search for more papers by this authorItaru Iwama
Division of Gastroenterology and Hepatology, Saitama Children's Medical Center, Saitama City, Saitama, Japan
Search for more papers by this authorShin-Ichiro Hagiwara
Department of Gastroenterology, Nutrition and Endocrinology, Osaka Women's and Children's Hospital, Izumi, Osaka, Japan
Search for more papers by this authorTakahiro Kudo
Department of Pediatrics, Faculty of Medicine, Juntendo University, Bunkyo-ku, Tokyo, Japan
Search for more papers by this authorMichiko Takahashi
Department of Pediatrics, Sapporo Kosei General Hospital, Sapporo, Hokkaido, Japan
Search for more papers by this authorTakeshi Saito
Division of pediatric surgery, Chiba Children's Hospital, Chiba City, Chiba, Japan
Search for more papers by this authorReiko Kunisaki
Inflammatory Bowel Disease Center, Yokohama City University Medical Center, Yokohama, Kanagawa, Japan
Search for more papers by this authorMotoi Uchino
Division of Inflammatory Bowel Disease, Department of Gastroenterological Surgery, Hyogo College of Medicine, Nishinomiya, Hyogo, Japan
Search for more papers by this authorSakiko Hiraoka
Department of Gastroenterology and Hepatology, Graduate School of Medicine, Dentistry and Pharmaceutical Sciences, Okayama University, Okayama, Japan
Search for more papers by this authorMakoto Naganuma
Division of Gastroenterology and Hepatology, Third Department of Internal Medicine, Kansai Medical University, Hirakata, Osaka, Japan
Search for more papers by this authorKen Sugimoto
First Department of Medicine, Hamamatsu University School Medicine, Hamamatsu, Shizuoka, Japan
Search for more papers by this authorJun Miyoshi
Department of Gastroenterology and Hepatology, Kyorin University School of Medicine, Mitaka-shi, Tokyo, Japan
Search for more papers by this authorTomoyoshi Shibuya
Department of Gastroenterology, School of Medicine, Juntendo University, Bunkyo-ku, Tokyo, Japan
Search for more papers by this authorTadakazu Hisamatsu
Department of Gastroenterology and Hepatology, Kyorin University School of Medicine, Mitaka-shi, Tokyo, Japan
Search for more papers by this authorCorresponding Author
Hideki Kumagai
Department of Pediatrics, Jichi Medical University, Shimotsuke, Tochigi, Japan
Correspondence: Hideki Kumagai, MD PhD, Department of Pediatrics, Jichi Medical University, 3311-1 Yakushiji, Shimotsuke, Tochigi 329-0498, Japan. Email: [email protected]
Search for more papers by this authorToshiaki Shimizu
Department of Pediatrics, Faculty of Medicine, Juntendo University, Bunkyo-ku, Tokyo, Japan
Search for more papers by this authorItaru Iwama
Division of Gastroenterology and Hepatology, Saitama Children's Medical Center, Saitama City, Saitama, Japan
Search for more papers by this authorShin-Ichiro Hagiwara
Department of Gastroenterology, Nutrition and Endocrinology, Osaka Women's and Children's Hospital, Izumi, Osaka, Japan
Search for more papers by this authorTakahiro Kudo
Department of Pediatrics, Faculty of Medicine, Juntendo University, Bunkyo-ku, Tokyo, Japan
Search for more papers by this authorMichiko Takahashi
Department of Pediatrics, Sapporo Kosei General Hospital, Sapporo, Hokkaido, Japan
Search for more papers by this authorTakeshi Saito
Division of pediatric surgery, Chiba Children's Hospital, Chiba City, Chiba, Japan
Search for more papers by this authorReiko Kunisaki
Inflammatory Bowel Disease Center, Yokohama City University Medical Center, Yokohama, Kanagawa, Japan
Search for more papers by this authorMotoi Uchino
Division of Inflammatory Bowel Disease, Department of Gastroenterological Surgery, Hyogo College of Medicine, Nishinomiya, Hyogo, Japan
Search for more papers by this authorSakiko Hiraoka
Department of Gastroenterology and Hepatology, Graduate School of Medicine, Dentistry and Pharmaceutical Sciences, Okayama University, Okayama, Japan
Search for more papers by this authorMakoto Naganuma
Division of Gastroenterology and Hepatology, Third Department of Internal Medicine, Kansai Medical University, Hirakata, Osaka, Japan
Search for more papers by this authorKen Sugimoto
First Department of Medicine, Hamamatsu University School Medicine, Hamamatsu, Shizuoka, Japan
Search for more papers by this authorJun Miyoshi
Department of Gastroenterology and Hepatology, Kyorin University School of Medicine, Mitaka-shi, Tokyo, Japan
Search for more papers by this authorTomoyoshi Shibuya
Department of Gastroenterology, School of Medicine, Juntendo University, Bunkyo-ku, Tokyo, Japan
Search for more papers by this authorTadakazu Hisamatsu
Department of Gastroenterology and Hepatology, Kyorin University School of Medicine, Mitaka-shi, Tokyo, Japan
Search for more papers by this authorAbstract
Inflammatory bowel disease (IBD) is a chronic relapsing inflammatory disorder of the intestine. The incidence of IBD is increasing worldwide, including Japan, and in approximately 25% of all affected patients it is diagnosed before 18 years of age. For the health maintenance of such patients, planned transition to adult care systems is essential. Previous Japanese surveys have revealed gaps between adult and pediatric gastroenterologists with regard to their knowledge and perception of health-care transition for patients with childhood-onset IBD. In 2021–2022, several Web workshops to discuss issues related to the transitional care of IBD patients were held by the Ministry of Health, Labour and Welfare of Japan as part of their program for research on intractable diseases. Clinicians experienced in IBD treatment for pediatric and adult patients participated. As a result, this panel of adult and pediatric gastroenterologists developed five consensus statements on the issue of “transfer from pediatric to adult care” and nine statements on the issue of “addressing transitional care (transition program).” To address current gaps in health-care transition for childhood-onset IBD patients, a programmed approach to transition, and better partnerships between pediatric and adult gastroenterologists are indicated. It is hoped that this consensus statement will provide a basis for the development of appropriate guidelines for clinical practice.
References
- 1Blum RW, Garell D, Hodgman CH et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the society for adolescent medicine. J. Adolesc. Health 1993; 14: 570–6.
- 2Philpott JR. Transitional care in inflammatory bowel disease. Gastroenterol. Hepatol. (N Y) 2011; 7: 26–32.
- 3 National Alliance to Advance Adolescent Health Gottransition.org [homepage on the internet]. Washington, DC; [Cited 29 April 2022]. Available from URL: https://www.gottransition.org/
- 4 National Center for Child Health and Development [homepage on the internet]. Tokyo, Japan; [Cited 29 April 2022]. Available from URL: https://transition-support.jp/ikou/six_core2
- 5Baumgart DC, Bernstein CN, Abbas Z et al. IBD around the world: comparing the epidemiology, diagnosis, and treatment: Proceedings of the world digestive health day 2010-inflammatory bowel disease task force meeting. Inflamm. Bowel Dis. 2011; 17: 639–44.
- 6Ishige T, Tomomasa T, Hatori R et al. Temporal trend of pediatric inflammatory bowel disease: Analysis of national registry data 2004–2013 in Japan. J. Pediatr. Gastroenterol. Nutr. 2017; 65: e80–2.
- 7Benchimol EI, Fortinsky KJ, Gozdyra P, van den Heuvel M, van Limbergen J, Griffiths AM. Epidemiology of pediatric inflammatory bowel disease: A systematic review of international trends. Inflamm. Bowel. Dis. 2011; 17: 423–39.
- 8Nardone OM, Iacucci M, Ghosh S, Castiglione F. Can a transition clinic bridge the gap between paediatric and adult inflammatory bowel disease care models? Dig. Liver Dis. 2020; 52: 516–27.
- 9van Staa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev. 2011; 37: 821–32.
- 10Baldassano R, Ferry G, Griffiths A, Mack D, Markowitz J, Winter H. Transition of the patient with inflammatory bowel disease from pediatric to adult care: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J. Pediatr. Gastroenterol. Nutr. 2002; 34: 245–8.
- 11 American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002; 110 (6 Pt 2): 1304–6.
- 12Karwowski C, Keljo D, Szigethy E. Strategies to improve quality of life in adolescents with inflammatory bowel disease. Inflamm. Bowel. Dis. 2009; 15 (11): 1755–64.
- 13Kumagai H, Kudo T, Uchida K et al. Adult gastroenterologists’ views on transitional care: Results from a survey. Pediatr. Int. 2019; 61: 817–22.
- 14Kumagai H, Kudo T, Uchida K et al. Transitional care for inflammatory bowel disease: A survey of Japanese pediatric gastroenterologists. Pediatr. Int. 2021; 63: 65–71.
- 15Goodhand J, Hedin CR, Croft NM, Lindsay JO. Adolescents with IBD: The importance of structured transition care. J. Crohns Colitis 2011; 5: 509–19.
- 16Kumagai H, Suzuki Y, Shimizu T. Transitional care for patients with inflammatory bowel disease: Japanese experience. Digestion 2021; 102 (Suppl. 1): 18–24.
- 17Sattoe JNT, Peeters MAC, Haitsma J, van Staa A, Wolters VM, Escher JC. Value of an outpatient transition clinic for young people with inflammatory bowel disease: a mixed-methods evaluation. BMJ Open 2020; 10: e033535.
- 18van Rheenen PF, Aloi M, Biron IA et al. European Crohn’s and colitis organization topical review on transitional care in inflammatory bowel disease. J. Crohns Colitis 2017; 11 (9): 1032–8.
- 19Gray WN, Holbrook E, Dykes D et al. Improving IBD transition, self-management, and disease outcomes with an in-clinic transition coordinator. J. Pediatr. Gastroenterol. Nutr. 2019; 69 (2): 194–9.
- 20Erős A, Soós A, Hegyi P et al. Spotlight on transition in patients with inflammatory bowel disease: A systematic review. Inflamm. Bowel Dis. 2020; 26: 331–46.
- 21Tan B, Ong D. Pediatric to adult inflammatory bowel disease transition: The Asian experience. Intest. Res. 2020; 18 (1): 11–7.
- 22Kumagai H, Akiyama T, Abukawa D et al. Guidelines for autonomy support of patients with IBD in the transitional period. Jpn. J. Pediatr. Gastroenterol. Hepatol. Nutr. 2018; 32: 15–27.
- 23Kaufman M, Pinzon J, Canadian Paediatric Society, Adolescent Health Committee. Transition to adult care for youth with special healthcare needs. Pediatr. Child Health 2007; 12: 785–8.
- 24 Information Center for Specific Pediatric Chronic Diseases, Japan Shouman.jp [homepage on the internet]. Tokyo, Japan; [Cited 29 April 2022]. Available from URL: https://www.shouman.jp/
- 25 Japan Intractable Diseases Information Center Nanbyou.or.jp [homepage on the internet]. Tokyo, Japan; [Cited 29 April 2022]. Available from URL: https://www.nanbyou.or.jp/entry/5460
- 26Ueno F, Nakayama Y, Hagiwara E, Kurimoto S, Hibi T. Impact of inflammatory bowel disease on Japanese patients’ quality of life: Results of a patient questionnaire survey. J. Gastroenterol. 2017; 52: 555–67.
- 27Ben-Horin S, Novack L, Mao R et al. Efficacy of biologic drugs in short-duration versus long-duration inflammatory bowel disease: A systematic review and an individual-patient data meta-analysis of randomized controlled trials. Gastroenterol. 2022; 162: 482–94. https://doi.org/10.1053/j.gastro.2021.10.037
- 28Rosen MJ, Dhawan A, Saeed SA. Inflammatory bowel disease in children and adolescents. JAMA Pediatr. 2015; 169 (11): 1053–60.
- 29Breton J, Kastl A, Conrad MA, Baldassano RN. Positioning biologic therapies in the management of pediatric inflammatory bowel disease. Gastroenterol. Hepatol. (N Y) 2020; 16: 400–14.
- 30Arnett JJ. Emerging adulthood: A theory of development from the late teens through the twenties. Am. Psychol. 2000; 55: 469–80.
- 31Colver A, Longwell S. New understanding of adolescent brain development: Relevance to transitional healthcare for young people with long term conditions. Arch. Dis. Child. 2013; 98: 902–7.
- 32Cole R, Ashok D, Razack A, Azaz A, Sebastian S. Evaluation of outcomes in adolescent inflammatory bowel disease patients following transfer from pediatric to adult health care services: Case for transition. J. Adolesc. Health 2015; 57: 212–7.
- 33Sequeira PA, Pyatak EA, Weigensberg MJ et al. Let's empower and prepare (LEAP): Evaluation of a structured transition program for young adults with type 1 diabetes. Diabetes Care 2015; 38 (8): 1412–9.
Citing Literature
