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Risk‐reducing surgery in FAP: Role for surgeons beyond the incision
Author(s) -
Neuman H.B.,
Robbins L.,
Duarte J.,
Charlson M.E.,
Weiser M.R.,
Guillem J.G.,
Wong W.D.,
Temple L.K.
Publication year - 2010
Publication title -
journal of surgical oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.201
H-Index - 111
eISSN - 1096-9098
pISSN - 0022-4790
DOI - 10.1002/jso.21556
Subject(s) - medicine , familial adenomatous polyposis , grounded theory , qualitative research , surgery , family medicine , general surgery , nursing , colorectal cancer , cancer , social science , sociology
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. J. Surg. Oncol. 2010; 101:570–576. © 2010 Wiley‐Liss, Inc.