Information needs associated with changes to sexual well-being after breast cancer

Aims. This article is the report of a study of sexual information needs, experiences of obtaining such information, and patient communication about sexuality with health professionals, after breast cancer. Background. Changes to sexuality after breast cancer can significantly affect quality of life. However, information needs associated with such changes are little understood, resulting in the absence of a knowledge base to guide information provision aimed at preventing or ameliorating distress. Design. This study employs a mixed method analysis, integrating qualitative and quantitative responses to an online survey. Method. Participants were 1965 individuals with breast cancer (98.8% female) drawn from the membership of a national Australian breast cancer organization. The data were collected over 2 weeks in December 2010. Results. Eighty-five per cent of participants reported changes to sexual well-being after breast cancer, with 68% wanting information on such changes, primarily in a written form. Information on physical changes, sexual response, relationship issues, psychological consequences, and body image or identity, were rated as very important by a substantial proportion of participants. Only 41% had obtained such information; however, 65% had spoken about sexual changes, to partner (76%), G.P. (49%), friend/relative (47%), oncologist (39%), or breast-care nurse (21%). Ratings of satisfaction with the discussion were highest for breast-care nurses (60%) and lowest for oncologists (34%). Conclusion. These findings provide clinicians and cancer organizations with specific suggestions about sexual information needs after breast cancer and the modalities which are preferred, to prevent and ameliorate distress.