Preventing and Treating Cancer-Related Sexual Problems: From Guidelines to Practical Workflows

By Leslie R. Schover, PhD

Will2Love.com

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.

Advocacy: Building Relationships, Fostering Awareness, and Promoting Change

Heather Hylton, MS, PA-C

In September, ASCO held its 2018 Advocacy Summit on Capitol Hill. More than 100 advocates across 30 states joined forces to speak to Members of Congress and their staff on several key issues:

  • Clinical trials access for Medicaid patients

  • Removing barriers to providing patients with the right therapy at the right time

  • Mitigating administrative burdens for patients and clinicians

  • Robust funding support for the National Institutes of Health and the National Cancer Institute

Why is this work important?

Advocacy is about building relationships, providing the constituent’s perspective on proposed and existing policy, and speaking to the changes that we would like to see. Many organizations, including ASCO, have exceptional policy experts on staff who work diligently to advance legislative priorities and ensure members of these organizations have awareness of key policy issues affecting their patients and their practices.

Where we, as citizen advocates, can have our greatest impact is amplifying this work through focused conversations with our elected officials and their staff on how a particular issue is affecting or could affect their constituents. What resonates most is sharing specific examples—this narrative helps make an issue personal and tangible—and something the elected official should care about.

If not you, who?

 Lawmakers are responsible for having knowledge on an extensive range of subject matter areas. In Congress, few Members come from a healthcare background yet they are charged with the great responsibility of making sound decisions when it comes to healthcare-related policy matters.

With this being the case, what better resource could elected officials have than constituents working directly in the trenches of healthcare? There is no surrogate for this kind of expertise.

According to the Congressional Management Foundation, relationships are vital: 62% of congressional staff surveyed felt establishing a relationship with the District or State Director was important while nearly 80% felt advocates should establish a relationship with the legislative assistant who has jurisdiction over a specific issue area. Further, more than 90% of congressional staff surveyed reported that direct constituent interactions, either in the district office back home or in Washington, DC, have significant influence on lawmakers’ decisions. In fact, these direct interactions have been identified as being more influential than any other communications strategy.

The seat at the table

As with any kind of decision-making, we often feel challenged when we are not able to have a seat at the table or opportunity to provide input on a particular issue, especially when those making the decisions are far removed from the matter at hand.

Shirley Chisholm, former Member of Congress who made a presidential bid in 1972, once said, “If they don’t give you a seat at the table, bring a folding chair.” Advocacy work allows each of us to take a seat at the table in some way and serves as a tool to help move forward the change we want to see.

Advocacy work is something we can all do, and no experience in this area is required to have a meaningful impact. ASCO has resources available to assist advocates in preparing for conversations with elected officials and their staff at both the local and national level.

With the 116th Congress starting its work on January 3, 2019, there will be a great need to highlight issues affecting our patients and practices, and every voice will be essential to ensure our patients’ access to high-quality cancer care.

More information on ASCO’s Policy Priorities can be found here.

(L-R):  JOP  DAiS Editor Steve Lee, MD; Manish Shah, MD, FASCO;  JOP  DAiS Editor Heather Hylton, PA-C; Kristina Novick, MD; and Sanjay Goel, MD, are pictured at ASCO’s 2019 Advocacy Summit.

(L-R): JOP DAiS Editor Steve Lee, MD; Manish Shah, MD, FASCO; JOP DAiS Editor Heather Hylton, PA-C; Kristina Novick, MD; and Sanjay Goel, MD, are pictured at ASCO’s 2019 Advocacy Summit.

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