Impact of Familial Adenomatous Polyposis on Young Adults: Quality of Life Outcomes

Purpose This study used a novel questionnaire to assess quality of life and psychologic adjustment among young adults aged 18 to 35 years with a diagnosis of, or at risk of, developing familial adenomatous polyposis. Methods Eighty-eight participants (25 males) were recruited through four Australian Hereditary Bowel Cancer Registries. Results The average age of participants was 28 years, and the average age of these participants at the time of their last genetic consultation was 23 years. Seventy-one participants (81 percent) had clinical familial adenomatous polyposis, of whom 57 had undergone an ileorectal anastomosis or formation of an ileal pouch with anal anastomosis to prevent colorectal cancer. The ileal-pouch-with-anal-anastomosis group had significantly more adverse outcomes for physical functioning, body image, sexual impact, and negative affect compared with the no-surgery group—and significantly more negative outcomes for physical functioning and negative affect compared with the ileorectal-anastomosis group. Among the total sample, a small proportion (11.4 percent) had avoidance scores indicative of a significant stress response, and being single was associated with higher levels of avoidance responses about familial adenomatous polyposis (z = −3.19; P = 0.001). Conclusions Familial adenomatous polyposis may have a negative impact across a broad range of life domains. Being single is an important risk factor for adverse psychologic outcomes. Delaying surgery, especially ileal pouch with anal anastomosis may minimize the negative impact on physical and psychologic functioning. Referral for psychologic intervention may be required for a small proportion of those affected by familial adenomatous polyposis, and ongoing access to genetic services may help to identify and address the needs of this group. Poster presentation at International Congress of Human Genetics, Brisbane, Australia, August 6 to 10, 2006; the International Meeting on Psychosocial Aspects of Genetic Testing for Hereditary Cancer, Philadelphia, Pennsylvania, June 9 to 10, 2005; and Australia Gastroenterology Week, Adelaide, Australia, October 11 to 14, 2006. Presented at the Kathleen Cuningham Consortium for Familial Aspects of Breast Cancer Meeting, Queensland, Australia, August 30 to September 3, 2005; and the Conference of the International Society for Gastrointestinal Hereditary Tumors, Newcastle, United Kingdom, June 14 to 17, 2005. Funded by the Cure Cancer Foundation of Australia. Bettina Meiser is supported by a Career Development Award from The National Health and Medical Research Council of Australia (ID 350989). Reprints are not available.