Prophylactic Mastectomy: The Patient Experience

说明(申请人提供)：预防性乳房切除术(PM)已被证明可以将高风险和中等风险女性患乳腺癌的风险降低90%，但其使用受到可接受性较低的限制。研究人员警告说，这是一个高度个人化的决定，但患者和提供者几乎没有关于PM的心理社会结果的数据项目目标是：a.描述PM的自我感知的好处以及对身体、情感和人际的影响；b.描述癌症家族史和家庭沟通对PM的决策和结果的影响；c.利用病例比较来评估医疗、心理和家庭因素在决定PM的积极或不利结果方面的相对影响；以及d.基于定性分析和强调第一人称叙述的专著，供考虑PM的妇女使用，并作为卫生保健提供者建议患者的工具。该项目将定性分析108个访谈叙述，这些叙述来自之前资助的一个研究项目，该研究项目是关于正在考虑或正在从PM中恢复的女性的心理咨询需求样本包括接受单侧PM的癌症妇女(n=50)，选择双侧PM的未受影响的妇女(n=21)，以及考虑PM的妇女(n=37)。分析将利用问题导向和跨案例研究的方法。将开发模式和例外情况。将开发一本利用这些叙述并将其组织成用户友好的患者主题区域的专著。提供者的报告也有望加强对患者的建议。未来的研究可能会评估这种材料对考虑PM的妇女和医疗保健提供者的效用。该项目的数据将为未来PM研究的假说形成提供信息

DESCRIPTION (provided by applicant): Prophylactic mastectomy (PM) has been shown to reduce the risk of breast cancer 90% in women at high and moderate risk, but its use is limited by low acceptability. Researchers caution that this is a highly personal decision, but patients and providers have little data about psychosocial outcomes of PM. Project goals are: a. To describe the self-perceived benefits of PM and the physical, emotional, and interpersonal impacts; b. To describe the impact of cancer family history and family communication on decision-making for and outcomes of PM; c. To utilize case comparisons to assess the relative influence of medical, psychological, and family factors in determining positive or adverse outcomes of PM; and, d. To produce a monograph based on the qualitative analysis and emphasizing first-person narratives for use by women considering PM and as a tool for health care providers in advising their patients. This project will qualitatively analyze 108 interview narratives from a previously-funded research project on psychological consultation needs of women considering or recovering from PM. The sample includes women with cancer who underwent unilateral PM (n=50), unaffected women who chose bilateral PM (n=21), and women considering PM (n=37). Analysis will utilize issue-oriented and cross-case research methods. Modal and exceptional cases will be developed. A monograph utilizing the narratives and organizing them into user-friendly topic areas for patients will be developed. Reports for providers will also hopefully enhance advice to patients. Future research may assess utility of this material for women considering PM and for health care providers. Data from the project will inform hypothesis formation for future studies of PM.