Few oncology settings provide optimal care for the sexual concerns of people treated for cancer. According to recent literature reviews, at best half of cancer patients recall any discussion of sexuality and cancer with their oncology team. If sex is mentioned, it is most commonly as a potential side effect of cancer treatment at the time of informed consent. Rarely do health professionals start a conversation about the state of a patient's sex life in appointments during or after cancer treatment. Estimates are that perhaps 10% of cancer patients are assertive enough to ask a question about sex when they have a problem, and fewer than 20% get effective professional help.
It is not easy or cheap to provide good sexual health care. Barriers include a lack of recognition on the part of many oncology professionals of the importance of cancer-related sexual problems to patients and their partners. In fact, repeated surveys of cancer survivors show that sexual concerns are ranked among their top five unmet needs. Oncology physicians, nurses, social workers, and others on the treatment team typically have little training in how to identify and manage sexual dysfunction. With increasing pressure to see more patients in less time (an average oncology clinic visit only lasts 13-16 minutes), it is understandable that sexual issues fall off the clinician's radar.
Discussions of infertility are now somewhat more likely to occur as part of oncology care, especially since repeated practice guidelines from the American Society of Clinical Oncology (ASCO) supported discussing potential infertility with all at-risk patients. Sadly, fairly recent surveys still show that around half of younger patients do not recall being warned about infertility or referred for consideration of fertility preservation. The high cost of fertility preservation and lack of insurance coverage further reduce the percentage of candidates who freeze sperm, eggs, or embryos before cancer treatment. However, infertility affects a much smaller group of people, since the average age of diagnosis of cancer is 64. Long-term, severe sexual problems affect around 60% of all people treated for cancer. Surprisingly, at least as far as I know, ASCO has refused at least twice to issue a practice guideline on sexuality. The National Comprehensive Cancer Network did issue a practice guideline on addressing sexual concerns at least as part of the care of cancer survivors. However, in my opinion the guideline was poorly thought out in terms of a clinic's workflow or potential insurance reimbursement for the services it advocated.
How can oncology settings do a better job? In our September 19th webinar (6 PM PDT/9 PM EDT, click here to register!) we will provide a framework to make it easier to provide sexual health care without derailing a clinical schedule. Just to give you a flavor of what will be discussed, here are some major points:
- You need buy-in from administrative and clinical leaders that preventing or resolving sexual problems after cancer is an important part of value-based care. Having a special program can differentiate a cancer center or smaller oncology practice in the marketplace and illustrates a concern for quality of life. It also can increase referrals for specialty care (urology, gynecology, endocrinology) that is still procedure-based.
- Frontline clinicians should be trained and strongly encouraged to ask one quick question about sex as part of each visit (during treatment planning, while treatment is ongoing, and at follow-up): Many people treated for cancer notice problems in their sex life. Do you have a question or problem regarding sexuality?
- Rather than feeling compelled to take more time to address the issue, each clinic should have at least one staff member (such as a nurse, patient advocate, physician assistant, social worker, etc.) trained to assess sexual problems and to provide brief counseling and triage referrals. That person ideally should be available for a same-day consult or special visit in the near future. It may be easier to bill for the visit if it is not on the same day, but CPT codes may be available to create a separate service. Will2Love's Pro Portal is designed to provide the online training and knowledge that your clinic sex expert would need.
- A clinic team should invest the effort to create at least a local referral network of specialists, including expert gynecologists, urologists, physical therapists specializing in pelvic pain/incontinence, and mental health professionals with expertise both in oncology care and in cognitive-behavioral sex therapy for cancer-related problems. For settings located outside of major cities, cultivating a referral network may involve working with specialists to ensure that they have some extra clinical training and initially, supervision.
- Ideally a program should have a designated leader who helps to develop the new services, works with the business office to maximize insurance reimbursement, conducts chart reviews to ensure that care is being delivered as planned, and organizes multidisciplinary workshops or periodic conferences to promote interaction between the clinicians involved in the program, both inside and outside the clinic itself. Presenting some case outcomes will hopefully energize clinicians by illustrating any areas that need improving as well as showing the impact the program is having on patients' lives.
This educational material is intended for informational purposes only and is not intended to replace, or substitute for, professional advice, counseling, diagnosis, or treatment. Always seek the advice of a qualified health provider with any questions you may have regarding a condition. Never disregard professional advice or delay in seeking treatment because of something you have read in this educational material.
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