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Hirschsprung Disease

The Rise of Structured Transition and Long-term Care

Harrington, Amanda W.*; Gasior, Alessandra C.†,‡; Einarsdottir, Hulda*; Rothstein, David H.§; Rollins, Michael D.||; Ozgediz, Doruk E.*

Journal of Pediatric Gastroenterology and Nutrition: September 2019 - Volume 69 - Issue 3 - p 306–309
doi: 10.1097/MPG.0000000000002385
Short Communications: Gastroenterology

ABSTRACT Hirschsprung disease, like most surgically correctable congenital anomalies, is now survivable well into adulthood. Patients are, therefore, presenting later in life with problems that were previously infrequently encountered by colorectal surgeons or gastroenterologists. The goals of our review are to describe the current state of care transition for this patient population, identify the specific needs for these patients, and propose guidelines which could inform a future model of transition from the pediatric to adult setting. This is a review of the current state of care transition and long-term outcomes for patients with Hirschsprung disease. Although these patients report a generally good quality of life, the majority suffer from some degree of lifelong gastrointestinal complication, regardless of the type of operative repair. A more formalized transition of care will provide a guide for pediatric surgeons and patients, alleviate colorectal surgeon and gastroenterologist concerns, and provide better long-term care for these patients.

*Department of Surgery, Yale University School of Medicine, New Haven, CT

Department of Pediatric Surgery, Center for Colon and Pelvic Reconstruction, Nationwide Children's Hospital

Department of Colon and Rectal Surgery, The Ohio State University Medical Center, Columbus, OH

§University at Buffalo Jacobs School of Medicine and Biomedical Sciences, State University of New York, Buffalo, NY

||Primary Children's Hospital, University of Utah School of Medicine, Salt Lake City, UT.

Address correspondence and reprint requests to Amanda W. Harrington, MD, Surgical Critical Care Fellow, Boston Children's Hospital (e-mail:;DorukE.Ozgediz,MD,MSc,DepartmentofSurgery,SectionofPediatricSurgery,YaleUniversitySchoolofMedicine,POBox208064,NewHaven,CT06520-8064(

Received 30 August, 2018

Accepted 13 April, 2019

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in the HTML text of this article on the journal's Web site (

The authors report no conflicts of interest.

© 2019 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,