Risk-reducing surgery in FAP: Role for surgeons beyond the incision Journal Article
| Authors: | Neuman, H. B.; Robbins, L.; Duarte, J.; Charlson, M. E.; Weiser, M. R.; Guillem, J. G.; Wong, D. W.; Temple, L. K. |
| Article 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. © 2010 Wiley-Liss, Inc. |
| Keywords: | adolescent; adult; child; clinical article; school child; aged; middle aged; quality of life; colorectal neoplasms; social support; doctor patient relation; surgeon; health care personnel; medical practice; new york city; patient decision making; risk reduction; decision making; physician's role; emotionality; qualitative research; genetic counseling; adenomatous polyp; decision support; colectomy; qualitative; familial adenomatous polyposis; decisional preferences; prophylactic surgery; shared decision-making; nurse; adenomatous polyposis coli |
| Journal Title: | Journal of Surgical Oncology |
| Volume: | 101 |
| Issue: | 7 |
| ISSN: | 0022-4790 |
| Publisher: | Wiley Blackwell |
| Date Published: | 2010-06-01 |
| Start Page: | 570 |
| End Page: | 576 |
| Language: | English |
| DOI: | 10.1002/jso.21556 |
| PUBMED: | 20461762 |
| PROVIDER: | scopus |
| DOI/URL: | |
| Notes: | --- - "Export Date: 20 April 2011" - "CODEN: JSONA" - "Source: Scopus" |
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