Women's decision making needs related to treatment for recurrent ovarian cancer: A pilot study

Abstract

Context. Ovarian cancer is the 5th leading cause of cancer death among women in Canada (National Cancer Institute of Canada, 2005). It is estimated that 2,400 women were diagnosed in Canada in 2005. Unfortunately mortality for ovarian cancer is high; in 2005 approximately 1,550 Canadian women died of the disease (National Cancer Institute of Canada, 2005). Despite response rates to primary treatment of between 70 and 80%, 70% of cancers will recur within 24 months (McGuire, 2002). Due to an increasing number of chemotherapy options available for recurrent ovarian cancer, its management has shifted from a palliative approach to that of a chronic disease approach (Fitch & Turner, 2003b). Randomized controlled trials have failed to demonstrate clear evidence that any one treatment provides superior long-term survival, response rates, or better quality of life (Fung Kee Fung, Elit, Hirte, Rosen, & Members of the Gynecologic Oncology Disease Site Group, 2003). It has been suggested that, in the absence of such evidence, treatment decisions should be based on patient preference (O'Connor et al., 2004). Objectives. The purpose of this pilot study was to describe the decision making needs of women considering treatments for recurrent ovarian cancer. Design. A retrospective, cross-sectional needs assessment was conducted to describe the treatment decision making needs of women with recurrent ovarian cancer. Data were collected from women using face-to-face interviews. A semi-structured interview guide was developed based on the Ottawa Decision Support Framework and a standard template developed by Jacobsen and O'Connor (1998). The data were analyzed using Silverman's (2001) approach to content analysis. Setting. The Regional Gynecologic-Oncology Program of the participating center. Participants. Thirteen women with recurrent ovarian cancer who had made treatment decisions within the past 3 months were recruited from the outpatient day care unit. Outcome measures. Participants' views of their needs when considering treatment decisions for recurrent ovarian cancer. The interview guide elicited: perceptions of the decision including decisional conflict; perceptions of others involved in the decision; resources to make the decision; and individual characteristics. The Control Preference Scale was used to measure role preference (Degner & Sloan, 1992). Additional questions were asked about the extent to which hope influenced decisions. Results. Only five of 13 women perceived that they had options, only two of 13 had manifestations of decisional conflict. All women understood the poor prognosis associated with ovarian cancer. Seven of 13 women had played a passive role in the treatment decision. When considering future decisions, 9 of 13 women stated that they would prefer a shared or autonomous role. Moreover, 7 of 13 women wanted to be presented with options. Participants valued the role of nurses in providing information. In addition, the women identified hope as an important element in their lives. Conclusions. This pilot study provides preliminary information on women's decision making needs related to treatment for recurrent ovarian cancer. The findings need to be replicated in a study with a larger sample and in multiple centers before recommendations can be made. The findings also provide some direction for the design of a multidisciplinary decision making approach. Such an intervention would fit well in Cancer Care Ontario's strategy to improve the flow of care by developing care pathways.