Children with polyposis and their families have a pervasive disorder that can have long-term psychological implications. Because polyposis syndromes are rare, and individually distinct, medical care is most successful when provided as a team approach. Through our collaboration with the Department of Hereditary and Preventive Medicine at Creighton University, long-term care management of a child with polyposis is provided by a team of health care professionals that includes a pediatric gastroenterologist specialist, an oncologist, genetic counselor, pediatric nurse case manager, pediatric or colorectal surgeon as well as a child psychologist, if needed. Depending on family history and other factors, at-risk family members may be recommended for screening which has been shown to significantly affect the mortality and morbidity of these diseases. The education of parents and their role in helping manage their child's disease is critical to the well-being of the child.
Colorectal cancer registries are available via the web that provide families access to peer-support groups, regular newsletters, information on ongoing trials and studies, and perhaps most importantly, a diminished sense of isolation that is inherent to rare genetic disorders. With improved access to communication, many families may be registered in several institutions simultaneously. A comprehensive list of colorectal cancer registries is available at http://www.epi.grants.cancer.gov/CFR/about_colon.html.