Am J Gastroenterol. 2021 Apr;116(4):638-646. doi: 10.14309/ajg.0000000000001140.

Thomas M Attard ¹, Carol A Burke, Warren Hyer, Carol Durno, Karen E Hurley, Caitlin E Lawson, James Church, Shlomi Cohen, Michele H Maddux, Pediatric Committee of the American College of Gastroenterology

Author information

• ¹1Division of Gastroenterology, Hepatology and Nutrition, Children's Mercy Hospital, Kansas City, MO, USA; 2University of Missouri-Kansas City School of Medicine, Kansas City, MO, USA; 3Department of Gastroenterology, Hepatology and Nutrition, Digestive Disease and Surgery Institute, Cleveland Clinic, Cleveland, OH, USA; 4St Mark's Hospital Polyposis Registry, Harrow, United Kingdom; 5Division of Gastroenterology, Hepatology and Nutrition, The Hospital for Sick Children and the Zane Cohen Centre for Digestive Diseases, Mount Sinai Hospital, University of Toronto, Toronto, Canada; 6Center for Behavioral Health, Neurological Institute, Cleveland Clinic, Cleveland OH, USA; 7Department of Colorectal Surgery, Digestive Disease and Surgery Institute, Cleveland Clinic, Cleveland, OH, USA; 8Dana-Dwek Children's Hospital, Tel Aviv Sourasky Medical Center and the Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel.

Abstract

Transition of care (TOC) in adolescents and young adults (AYAs) with chronic gastrointestinal disorders has received increased attention, especially in those with inflammatory bowel disease. AYAs with hereditary polyposis syndromes are a heterogeneous group of patients with overlapping and complex medical needs. These patients are particularly vulnerable because of the risk of loss of continuity of care and subsequent poor disease outcomes. The Pediatric Committee of the American College of Gastroenterology commissioned a report with recommendations on TOC in AYAs with hereditary polyposis syndromes. This report aims at achieving best practice by both pediatric and adult gastroenterologists despite the paucity of published evidence in this population reflected in the included PRISMA report. Therefore, the group extrapolated findings from the literature related to other chronic gastrointestinal disorders, and a high degree of expert consensus was scored for all recommendations. The report addresses TOC through identifying shared domains followed by specific recommendations in disease management, including models of care, providers and patient and socioeconomic factors relevant to TOC. Areas of strong emphasis include the need for early planning, flexibility in the transition process to maintain continuity during major surgical procedures, patient and family psychological readiness, liaison among team members addressing transition, and changing insurance coverage in this population.