Patient reported disease-specific concerns relating to sexuality in multiple myeloma

Abstract Purpose There is increasing recognition that cancer and its treatment can have lasting effects on sexuality. However, most studies focus on breast and reproductive cancers while hematological cancers remain understudied. Only one prior study has acknowledged the existence of sexuality concerns among multiple myeloma (MM) survivors but did not expand upon them. This study explored how diagnosis and treatment of MM may affect sexual expression and also examined patient-provider communication about sexuality. Methods Men and women with MM (N=65) were recruited internationally for an online survey. The survey included open-ended questions about MM-specific barriers to engaging in sexual activity, methods used to adapt to sexual changes, and communication with healthcare providers. Answers to open-ended questions were summarized using a qualitative descriptive approach. Results Participants identified several barriers to sexual activity that may be unique to MM, such as concerns about bone health, infections, and vaginal bleeding and bruising. They also described adapting to sexual challenges by trying sexual medicines/aids, changing their sexual expression, and managing treatment risks. Half of the participants reported speaking to providers about sexuality, with a minority receiving sexual health-related recommendations. Conclusions Participants often faced sexual challenges after diagnosis, many of which may be unique to MM. While some were able to adapt to these changes, sexuality concerns were under-discussed and under-treated by healthcare providers. Proposed suggestions for improving patient-provider communication about sexuality and clinical care are offered based on the gaps identified by participants.