Risk‐reducing surgery in FAP: Role for surgeons beyond the incision

摘要: Background Although primary therapy in familial adenomatous polyposis (FAP) is surgical, little known about patients' surgical decision-making experience. The objective was to explore the process surrounding risk-reducing surgery FAP using qualitative methodology. Methods In-depth, semi-structured interviews with 14 patients and 11 healthcare providers experience caring for were conducted. Using grounded theory, line-by-line content analysis identified categories from which themes describing experiences emerged; continued until data saturation. Results Median age at 23 (7–37) years; interview 41 (19–74) years. Two underwent secondary cancer, remainder risk-reduction. Content experts included colorectal surgeons (3), geneticists (2), gastroenterologists nurses (3). Three emerged: Information: Family information source, level of varied. importance up-front emphasized. Influences on decision-making: Influential factors family experiences, youth, emotional state, support, role. Although often sought opinions, most (12/14) wanted an active/shared role decision-making. Life after surgery: Patients described as “easy part,” emphasizing need long-term relationships care providers. Conclusions Decisions are unique. A decision support tool may facilitate decision-making, better preparing life surgery. J. Surg. Oncol. 2010; 101:570–576. © 2010 Wiley-Liss, Inc.