Familial adenomatous polyposis: the mucosal surface of the colon is carpeted by numerous polypoid adenomas. (Copyright, UNSW Department of Pathology, from the ‘Images of Disease’ collection.)

Abstract

Familial Adenomatous Polyposis (FAP) is a dominantly inherited bowel cancer predisposition syndrome presenting with hundreds of premalignant polyps in the colon. The standard form of treatment is preventative surgery which involves removal of the entire colon. The rectum and colon may also be removed. Predictive testing is usually done at ten to fourteen years of age, and surgery is recommended by the age of 20. Thus, adolescents face a wide variety of difficult decisions and situations. The aim of this review is to critically evaluate existing literature which examines the experiences of these young people and their families, including their information and support needs, psychosocial adjustments and satisfaction with current genetic services.