MS H.B. Neuman MD

Memorial Sloan-Kettering Cancer Center, New York City, NY, United States

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Publications (1)3.24 Total impact

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    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.ResultsMedian 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.
    No preview · Article · Jun 2010 · Journal of Surgical Oncology

Publication Stats

5 Citations
3.24 Total Impact Points

Top Journals


  • 2010
    • Memorial Sloan-Kettering Cancer Center
      • Department of Surgery
      New York City, NY, United States