Risk-Reducing Surgery in FAP: Role for Surgeons Beyond the Incision | oneFAPvoice

welcome to oneFAPvoice

- a positively charged Familial Adenomatous Polyposis community.
  • join today!
scientific articles

Risk-Reducing Surgery in FAP: Role for Surgeons Beyond the Incision

key information

source: Journal of surgical oncology

year: 2010

authors: Neuman H B, Robbins L, Duarte J, Charlson M E, Weiser M R, Guillem J G, Wong W D, Temple L K

summary/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.

organization: Memorial Sloan-Kettering Cancer Center

DOI: 10.1002/jso.21556

read more full text source

expertly curated content related to this topic

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close