Chronic Disease

Patients with inherited cancer syndrome need help with decisions and long-term support from their surgeons

As an inherited cancer syndrome, familial adenomatous polyposis (FAP) produces hundreds and sometimes thousands of polyps in the colon and rectum. If not treated early with radical intestinal surgery, patients usually develop cancer by the time they reach the age of 40. The most radical surgery is removal of the large intestine and rectum, with an incision made in the abdomen to connect the small intestine with an external colostomy bag. The cancer risk approaches zero for this surgery, but it may cause male impotence, female infertility, and severely altered quality of life. Other less radical surgeries have more risk of cancer and less, but nevertheless substantial, impact on quality of life.

Surgeons can do more for these patients than just perform the procedure, concludes a new study. The researchers note that patients need their surgeon's help in making the surgery decisions as well as long-term support in coping with the body-altering changes, future complications, and quality of life.

A total of 14 patients with FAP and 11 health care providers were interviewed in depth about their experiences. The median patient age at surgery was 23, and 41 at the time of the interviews. The health care providers who were interviewed included colorectal surgeons, nurses, gastroenterologists, nurses, and geneticists. Throughout the interviews, three themes emerged. The first was information. Most patients received information about FAP from other family members who were affected and then from their doctors. Patients underscored the need for upfront information, including the risks and benefits of various surgical options. However, providers felt that providing this information was challenging, as patients were often overwhelmed at the time of their diagnosis. A second theme emerged over decisionmaking. This was influenced by the patient's family experience with FAP, the age of the patient, their emotional state, and the support being received. While patients actively sought out the opinions of family and others, the majority wanted to have an active role in the decisionmaking.

The final theme was life after surgery. During the interviews, it was emphasized that the care of these patients does not end after surgery. Patients felt that living with the aftermath of surgery was the most difficult part, particularly worrying about complications and changes in quality of life. The providers who were interviewed agreed with these patient feelings and tried to prepare them for the long-term relationship they would have with medical providers. The study was supported in part by the Agency for Healthcare Research and Quality (T32 HS00066).

See "Risk-reducing surgery in FAP: Role for surgeons beyond the incision," by H.B. Neuman, M.D., M.S., L. Robbins, D.S.W., J. Duarte, M.D., and others in the Journal of Surgical Oncology 101, pp. 570-576, 2010.

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