Development and Pilot Test of an Elective BSO Decision Support Guide

Summary

Principal Investigator: Miriam Kuppermann
Abstract: DESCRIPTION (provided by applicant): Ovarian cancer is a common and often fatal condition. Over 600,000 women undergo hysterectomy each year, 90% of which are done for non-cancerous conditions. Historically, many of these women have undergone bilateral salpingo-oophorectomy (BSO) to decrease the risk of ovarian cancer and/or to avoid possible morbidities and future surgery related to benign ovarian neoplasms, endometriosis, and pelvic pain. However, BSO results in a permanent loss of ovarian estrogen and androgens that are known to be associated with maintenance of cardiovascular health, bone health, sexual functioning, and overall health-related quality-of-life. As a result, consideration of ovarian retention for premenopausal women who are not at increased genetic risk of ovarian cancer has been advocated, although no clear guidelines have been established regarding how decisions should be made regarding whether or not to perform elective BSO and the time of hysterectomy for benign condition. Decision aids have been developed and their use has been encouraged, in a number of areas to help patients and providers share in making informed decisions, particularly in situations that include more than one approach to care, uncertain outcomes, and benefits and harms that people value differently. Clearly, decision making around BSO is an area the meets these criteria. We therefore propose to conductive formative research and use it to develop and pilot test a BSO Decision Support Guide, to help patients share with their providers in making informed, preference-based decisions regarding whether or not to undergo BSO concomitant to hysterectomy to prevent ovarian cancer. To accomplish these goals, we will conduct a series of focus groups and one-on-one qualitative interviews to assess how women who will be undergoing, or who have recently undergone, hysterectomy for non-cancerous conditions view elective BSO and to assess their information needs and desires regarding shared decision making in this context. We will then create a draft BSO Decision Support Guide using information obtained from the literature, from our formative research, and the experience of providers who have counseled women about this choice. After pilot testing the BSO Decision Support Guide among 62 women scheduled to undergo hysterectomy for benign conditions to assess its usefulness and usability for patients and their providers, we will generate a final version that will be ready for use in future studies of the impact of the intervention on decision quality and use of BSO. PUBLIC HEALTH RELEVANCE: Results of this study will contribute to the small literature on women's preferences and attitudes toward BSO. This study will generate a clinically useful BSO Decision Support Guide that women of varying literacy levels and diverse cultural backgrounds can use to help them participate in shared decisions about use of BSO. It will also generate questionnaires and data to be used in planning future evaluations of the impact of the guide on informed decision making regarding and use of and satisfaction with BSO concomitant to hysterectomy among average risk women.
Funding Period: ----------------2009 - ---------------2011-
more information: NIH RePORT