Life After Surgery: Surgeon Assessments of Quality of Life Among Patients With Familial Adenomatous Polyposis

Dis Colon Rectum. 2018 Oct;61(10):1217-1222. doi: 10.1097/DCR.0000000000001146.


Background: Without prophylactic surgery, patients with familial adenomatous polyposis are at high risk for colorectal cancer development. Various surgical options for prophylaxis are available. Patient decision-making for preventative treatments is often influenced by the preferences of healthcare providers.

Objective: We determined surgeon preferences for the surgical options available to patients with familial adenomatous polyposis.

Design: We obtained preference estimates for postoperative health states from colorectal surgeons who had treated ≥10 patients with familial adenomatous polyposis.

Settings: Assessments were made at an annual meeting of the American Society of Colon and Rectal Surgeons.

Main outcome measures: Utilities were measured through the time trade-off method. We determined utilities for 3 procedures used for prophylaxis, including total proctocolectomy with permanent ileostomy, colectomy with ileorectal anastomosis, and total proctocolectomy with IPAA. We also assessed utilities for 2 short-term health states: 90 days with a temporary ileostomy and 2 years with a poorly functioning ileoanal pouch.

Results: Twenty-seven surgeons who had cared for >1700 patients with familial adenomatous polyposis participated in this study. The highest utility scores were provided for colectomy with ileorectal anastomosis (0.98). Lower utility scores were provided for total proctocolectomy with permanent ileostomy (0.87) and IPAA (0.89). The number of patients with familial adenomatous polyposis who were treated by participating surgeons did not influence these estimates; however, more-experienced surgeons gave lower utility scores for a poorly functioning ileoanal pouch than less-experienced surgeons (0.15, 0.50, and 0.25 for high-, medium-, and low-volume surgeons; p = 0.02).

Limitations: This study was limited by the sample size.

Conclusions: For patients with familial adenomatous polyposis and relative rectal sparing, surgeon preferences are greatest for colectomy with ileorectal anastomosis. Utility estimates provided by this study are important for understanding surgical decision-making and suggest a role for ileorectal anastomosis in appropriately selected patients. See Video Abstract at

MeSH terms

  • Adenomatous Polyposis Coli / psychology
  • Adenomatous Polyposis Coli / surgery*
  • Anastomosis, Surgical / methods
  • Clinical Decision-Making
  • Colectomy / methods
  • Colorectal Neoplasms / psychology
  • Colorectal Neoplasms / surgery*
  • Colorectal Surgery / organization & administration*
  • Colorectal Surgery / standards
  • Humans
  • Ileostomy / methods
  • Outcome Assessment, Health Care
  • Proctocolectomy, Restorative / methods
  • Prophylactic Surgical Procedures / standards*
  • Quality of Life / psychology*
  • Surgeons / statistics & numerical data*