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Risk-reducing surgery in FAP: role for surgeons beyond the incision.

H B Neuman1, L Robbins, J Duarte

  • 1Department of Surgery, Memorial Sloan-Kettering Cancer Center, New York, New York.

Journal of Surgical Oncology
|May 13, 2010
PubMed
Summary
This summary is machine-generated.

Familial adenomatous polyposis (FAP) patients undergoing risk-reducing surgery rely on family for information and desire shared decision-making. Post-surgery, long-term provider relationships are crucial for FAP management.

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Area of Science:

  • Gastroenterology
  • Surgical Oncology
  • Genetics

Background:

  • Familial adenomatous polyposis (FAP) management primarily involves surgery.
  • Patient experiences with surgical decision-making in FAP are not well understood.

Purpose of the Study:

  • To explore the decision-making process for risk-reducing surgery in FAP patients.
  • To understand patient and healthcare provider perspectives on FAP surgery.

Main Methods:

  • Qualitative methodology using in-depth, semi-structured interviews.
  • Grounded theory and line-by-line content analysis of interviews with 14 FAP patients and 11 healthcare providers.
  • Data saturation achieved through iterative analysis.

Main Results:

  • Key themes emerged: information sources (family primary, variable patient knowledge), decision influences (family history, age, emotions, support, desired role), and post-surgery needs (long-term care relationships).
  • Most patients (12/14) desired an active or shared role in decision-making.
  • Surgery was often perceived as the "easy part" compared to long-term management.

Conclusions:

  • Surgical decision-making in FAP is a unique process.
  • A decision support tool could aid FAP patients in preparing for surgery and long-term care.
  • Enhanced patient preparation and support are vital for FAP risk-reducing surgery outcomes.