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.