By Leslie R. Schover, PhD
Damage to sexual function affects roughly 60% of those treated for cancer. Sexual problems are usually severe and pervasive, decreasing desire for sex, damaging erections in men or causing genitourinary atrophy in women, and interfering with the ability to experience pleasure and orgasm. Time does not heal these dysfunctions. Medical and psychosocial treatment is typically required. Sexual problems have often ranked high among unmet needs in surveys of cancer survivors and are associated with decreased quality of life. In late 2017, ASCO published a new practice guideline and the National Comprehensive Cancer Network (NCCN) updated their menopause symptom guidelines, both agreeing that potential sexual problems should be brought up during treatment planning and assessed at follow-up. When problems are identified they should be further assessed and treated in multidisciplinary fashion.
Changing practice patterns in oncology settings is notoriously difficult. Recent surveys on patient-professional communication about oncofertility or sexuality agree that fewer than half of cancer patients recall any mention of these topics by their oncologist. Even then, discussions are usually restricted to a very brief warning about treatment side effects during the informed consent. For example, sexual dysfunction is ubiquitous after breast cancer treatment, but a recent mixed-methods study of communication between oncology professionals and women with breast cancer by Dr Jennifer Barsky Reese and colleagues, published in Patient Education and Counseling, found that only 40% of visits included some mention of the topic, initiated by the clinician 70% of the time. Conversations labelled as “in-depth” took place in only 25% of visits and tended to last only a couple of minutes. The likelihood that such brief and superficial counseling will help patients solve a complex sexual problem is slim.
Many cancer centers now have patients complete symptom checklists at each appointment. Some include one or more questions about sexual function. A weakness of this approach is that some patients with sexual problems fail to report them on the checklist. If an item on sexual function is checked, clinicians often skip discussing it out of anxiety, limited knowledge about the topic, or fear that addressing it will derail their clinic schedules. Few oncology professionals are trained to assess and manage cancer-related sexual dysfunction. Discussions about sexual issues are rarely documented in charts. If a problem is identified, referrals for specialty care are the exception rather than the rule.
A minority of large cancer centers have specialty clinics that treat men’s or women’s sexual problems, often including gynecologists, urologists, mental health professionals, advance practitioners, or specialized physical therapists. Although such clinics are a great step forward, only a small minority of patients with sexual problems benefit from them. Barriers include failure by the patient’s primary oncology team to identify a sexual concern and high out-of-pocket costs for these services due to reluctance by private insurers or Medicaid to reimburse them.
To meet the ASCO and NCCN guidelines, a different kind of workflow is needed. Both patients and professionals should be encouraged in internal publicity campaigns with posters, flyers, and videos to bring up the topic of sex and cancer. Someone on the oncology team should take 30 seconds to ask one question during treatment planning and periodically at follow-up, using a normalizing statement to put it into context: “Many patients treated for cancer notice new problems in their sex lives. Would you like help for any question or problem relating to sexuality?”
If the patient wants help, rather than adding unexpected time to a clinic visit or inpatient rounds to assess the situation, an institution should train several sexuality specialists who are available for timely consults to provide a thorough interview assessment and make appropriate referrals for specialty care as needed. Advanced practitioners are ideal since they not only can bill for an assessment visit using evaluation and management codes, but can also conduct a brief examination or order laboratory tests. Other good candidates for such training include oncology social workers, oncology nurse navigators, or mental health professionals. Training is increasingly available at specialty conferences or through comprehensive online programs.
Another step in the workflow is to provide patients with practical self-help interventions. Self-help books tend to be utilized mainly by college-educated women. Currently available books are mainly restricted to breast or prostate cancer. Most contain patient anecdotes but provide little concrete guidance on resolving problems. In contrast, internet-based Web sites or apps can be personalized to the patient’s type of cancer and can provide interactive content that encourages behavior change. The American Cancer Society has the most extensive online resources available for free at cancer.org. Most other internet content is superficial, repetitive, and often full of errors. As a breast cancer survivor commented in one of my intervention studies: “I am tired of being told to wear a camisole, use a lubricant, and get used to my new normal!” Several clinical trials have documented that online interventions can improve sexual function and satisfaction in cancer patients and their partners. Creating and maintaining online interventions is quite expensive, however, and patients are reluctant to pay for online content. Currently, the optimal solution is for hospitals or insurers to license such programs and provide them without charge to their patients.
One final challenge is meeting the needs of patients with low health literacy, language barriers, and/or poor insurance coverage. Nurse navigators could use online educational programs as a resource for more intensive counseling of patients who may have difficulty navigating them alone. When Medicaid or uninsured patients need specialty care, cancer centers may need to provide it at a loss or, if possible, refer them to community clinics.
The author is the founder of Will2Love and acknowledges a conflict of interest.