Women with Ovarian Cancer and Participation in Research: A Global Survey

Tuesday, 14 July 2009: 10:30 AM

Sandra Cesario, RNC, PhD
College of Nursing, Texas Woman's University - Houston, Houston, TX

Learning Objective 1: Reflect upon the stories of women around the world who have been included in, or excluded from, ovarian cancer research.

Learning Objective 2: Identify strategies that can be used by the nurse in recruiting and caring for women enrolled in research protocols.


Ovarian cancer is the fifth leading cause of cancer death in women and the most deadly of the gynecologic cancers. Due to inadequate screening procedures and diagnostic tools, the disease may not be identified until it is quite advanced (American Cancer Society, 2006).  Oftentimes, women participating in cancer drug trials do so because the gold standard for treatment has failed or the women do not have the financial means to access other forms of treatment.  The purpose of this global, online, phenomenological study was to explore the thoughts and feelings of women diagnosed with ovarian cancer regarding inclusion in, or exclusion from, cancer research. 


An online phenomenological was used to address the following research questions:

·         What has your experience been with research protocols since being diagnosed with ovarian cancer?

·         What do the phrases “inclusion criteria” and “exclusion criteria” mean to you?


More than 250 English-speaking women from 40 states and 11 countries completed the online survey.

Women with ovarian cancer express frustration, a lack of self-worth, and feelings of abandonment when denied the opportunity to participate in clinical trials.

The concepts of study inclusion and exclusion are poorly understood in the general population and lead to feelings that they are “not good enough” or that they are being denied a last opportunity for survival.


·         Additional education and support is need for women who have been excluded from studies.

·         Changes in policies that enable women to access experimental or off-label cancer drugs should be explored.