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-m aking. However, most studies have been done on women with breast cancer, wh ich often runs a lengthy course and has strong patient-advocacy groups. Lit tle 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 fata l course. Methods. This study of women with ovarian cancer investigates what informat ion is most vital for women with ovarian cancer, their preferred role in de cision-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 heal th status to be excellent or good, even though over 60% had metastatic dise ase. Over 80% of these women wanted detailed information about ovarian canc er during the diagnosis, treatment, and posttreatment stages of their disea se. In particular, they wanted information pertaining to the disease, treat ment, and self-care issues. Approximately 60% of women preferred to share d ecision-making with their doctors at every stage of the illness. Psychologi cal variables and disease severity were found to influence information need s and decisional preferences. In general, the more psychologically distress ed 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 m ore adequately meeting the individual information needs of women with ovari an cancer and involving them to the extent that they wish in the decision-m aking process. (C) 2000 Academic Press.