Information needs and decisional preferences among women with ovarian cancer

Objectives. Studies show that women with cancer want more information about and participation in all aspects of their health-care including decision-making. However, most studies have been done on women with breast cancer, which often runs a lengthy course and has strong patient-advocacy groups. Little is known about the preferences of women with ovarian cancer, the fifth leading cause of cancer death in women, which often has a more rapidly fatal course. Methods. This study of women with ovarian cancer investigates what information is most vital for women with ovarian cancer, their preferred role in decision-making, and the influence of sociodemographic, disease-related, and psychological factors. Results. Questionnaires were completed by 105 women with ovarian cancer in two Canadian university hospital oncology clinics. Their mean age was 55.8 +/- 14.9 years. Most were married, well-educated, and considered their health status to be excellent or good, even though over 60% had metastatic disease. Over 80% of these women wanted detailed information about ovarian cancer during the diagnosis, treatment, and posttreatment stages of their disease. In particular, they wanted information pertaining to the disease, treatment, and self-care issues. Approximately 60% of women preferred to share decision-making with their doctors at every stage of the illness. Psychological variables and disease severity were found to influence information needs and decisional preferences. In general, the more psychologically distressed the women, the more information they wanted about coping strategies and the more serious the illness, the more shared decision-making was desired. Conclusion. These results present a challenge to health care providers in more adequately meeting the individual information needs of women with ovarian cancer and involving them to the extent that they wish in the decision-making process. (C) 2000 Academic Press.