title: Risk-reducing surgery in FAP: role for surgeons beyond the incision.
abstract: BACKGROUND
  Although primary therapy in familial adenomatous polyposis (FAP) is surgical, little is known about patients' surgical decision-making experience. The objective was to explore the decision-making process surrounding risk-reducing surgery in FAP using qualitative methodology.
  
  
  METHODS
  In-depth, semi-structured interviews with 14 FAP patients and 11 healthcare providers with experience caring for FAP patients were conducted. Using grounded theory, line-by-line content analysis identified categories from which themes describing patients' experiences emerged; analysis continued until data saturation.
  
  
  RESULTS
  Median age at surgery was 23 (7-37) years; at interview 41 (19-74) years. Two patients underwent surgery secondary to cancer, the remainder for risk-reduction. Content experts included colorectal surgeons (3), geneticists (2), gastroenterologists (3), nurses (3).Three themes emerged: Information: Family was the primary information source, and patients' level of information varied. The importance of up-front information was emphasized. Influences on decision-making: Influential factors included family experiences, youth, emotional state, support, and decision-making role. Although patients often sought opinions, most (12/14) wanted an active/shared role in decision-making. Life after surgery: Patients described surgery as the "easy part," emphasizing the need for long-term relationships with care providers.
  
  
  CONCLUSIONS
  Decisions surrounding risk-reducing surgery in FAP are unique. A decision support tool may facilitate decision-making, better preparing patients for life after surgery.
authors.affiliation: Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, New York.
authors.forename: H B
authors.initials: HB
authors.lastname: Neuman
authors.forename: L
authors.initials: L
authors.lastname: Robbins
authors.forename: J
authors.initials: J
authors.lastname: Duarte
authors.forename: M E
authors.initials: ME
authors.lastname: Charlson
authors.forename: M R
authors.initials: MR
authors.lastname: Weiser
authors.forename: J G
authors.initials: JG
authors.lastname: Guillem
authors.forename: W D
authors.initials: WD
authors.lastname: Wong
authors.forename: L K
authors.initials: LK
authors.lastname: Temple
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000601:surgery*; D000293:Adolescent; D000328:Adult; D000368:Aged; D002648:Child; D003082:Colectomy / Q000379:methods; D015179:Colorectal Neoplasms / Q000517:prevention & control*; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009519:New York City; D010819:Physician's Role; D036301:Qualitative Research; D011788:Quality of Life