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ONCOLOGY. Vol. 13 No. 11
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Counseling Cancer Patients About Changes in Sexual Function

By Leslie R. Schover, PhD
Department of Behavioral Science, The University of Texas M. D. Anderson Cancer Center, Houston, Texas

| November 1, 1999
Cancer treatments often cause sexual dysfunctions that remain severe long after therapy is over. Nevertheless, sexual counseling is not routinely provided in most oncology treatment settings. Most patients and their partners can benefit from brief counseling that includes education on the impact of cancer treatment on sexual functioning; suggestions on resuming sex comfortably and improving sexual communication; advice on how to mitigate the effects of physical handicaps, such as having an ostomy, on sexuality; and self-help strategies to overcome specific sexual problems, such as pain with intercourse or loss of sexual desire. Brief counseling can be provided by one of the allied health professionals on the oncology treatment team. A minority of patients will need specialized, intensive medical or psychological treatment for a sexual dysfunction. In a large cancer center, such treatment could be provided as part of a reproductive health clinic serving the special needs of cancer patients. In smaller settings, the oncologist should build a referral network of specialists. Not all managed care organizations reimburse for these services, however. [ONCCOLOGY 13(11):1585-1591, 1999]

Introduction

Sexual dysfunction is one of the more common, enduring consequences of cancer treatment. About half of women who survive breast or gynecologic cancer report severe, long-lasting sexual problems.[1-3] Probably as many as 70% of men who are undergoing active treatment for localized prostate cancer will experience sexual impairment.[4-8] Although disease-free breast or prostate cancer survivors typically report that their overall health-related quality of life is normal, their sexual problems remain bothersome exceptions to this general good functioning.[1,6] For other cancers, such as testicular cancer, leukemia, or Hodgkin’s disease, at least one-quarter of patients are left with sexual dysfunction.[9-11]

Recent research has also highlighted that sexual dysfunction is highly prevalent among the general population of US men and women 18 to 59 years old, and that these problems are associated with both poor physical health and emotional distress.[12] Sexual problems become progressively more common with aging in men,[12,13] whereas menopausal women in the community are more likely to maintain good sexual function if they still have a partner.[14] Because sexual problems can contribute to poor self-esteem and interfere with relationships, it is worth some effort to try to remediate them.

Barriers to Providing Sexual Counseling in Oncology Settings

For a variety of reasons, sexual counseling has not become a routine part of oncology care in most settings.

Time Constraints

One important barrier is the time required for such counseling. A recent study found that the average duration of an outpatient visit to a family physician is now 10 minutes, including all patient-physician communication and the physical examination.[15] When a patient reported being emotionally distressed, the duration of the visit only increased to an average of 12.8 minutes.[16]

In busy oncology clinics, where outpatient visits must include educating patients about their disease, prognosis, and treatment, physicians and nurses often do not have the luxury of assessing quality-of-life issues. They may hesitate to bring up a topic such as sexuality because discussing it will take too much time and is not high enough on the list of priorities. Even when a patient returns for periodic follow-up visits, time is short and the focus is on the results of diagnostic tests.

Under managed care, more patients are being followed after the completion of cancer treatment by family physicians rather than oncologists. Nonspecialist physicians may not be as familiar with the long-term side effects of cancer treatment, including the risks of sexual dysfunction.

Physicians may also be working within systems that discourage referrals for specialty care. Furthermore, even in traditional indemnity plans, many private insurers exclude mental health treatment of sexual dysfunction from their list of reimbursed services.

Discomfort About Discussing Sexual Issues

Another barrier is the discomfort health care providers and patients may feel about discussing sexuality. Despite the ubiquity of sexual topics in the media, our society still considers sexuality “dirty” and titillating. A young physician may fear that an older cancer patient will regard a question about sexual function as disrespectful or even flirtatious. When the physician and patient are of different religious or ethnic backgrounds, fears of being insensitive or intrusive may be exacerbated. Yet, hidden sexual issues may interfere with patients’ compliance with cancer treatment, as the following vignette illustrates:

A female medical oncology fellow who had spent her life in the Midwest was puzzled when one of her first patients in Texas, an 80-year-old Mexican-American widower, refused his third shot of hormonal therapy for metastatic prostate cancer. The elderly man, who spoke fluent English, said that he understood when the doctor stressed that stopping the hormones would allow his bone metastases to spread. The man offered no explanation for his refusal. However, after a few minutes, the patient’s son, who was also present during the visit, explained: “My father feels that if he can’t still be a man, it is time to die.”

“You mean he’s worried about his sex life? But your father is a widower and he told me he had no girlfriends!” the fellow exclaimed.

“That’s true,” the son agreed, “but he still expects to be able to have erections, even if they just happen in the morning or in the shower. Without that ability, he doesn’t want to go on.”

Structure for Providing Basic Sexual Counseling

Oncology health care providers can easily become more comfortable and knowledgeable about sexual counseling, if they are willing to invest the time to do so. The American Medical Association, recognizing the limited training that physicians are given in this area, has designed a special workshop on this topic for continuing medical education.[17] For oncologists who want to gain more knowledge about understanding, assessing, and treating sexual problems related to cancer, comprehensive reviews of the literature are available.[2,18]

Routine Quality-of-Life Screening

The most practical way to include sexual counseling routinely in oncology clinics is to provide routine screening and counseling for quality-of-life issues related to cancer treatment. When treatment teams are organized by disease site (for example, in a breast cancer clinic) or by treatment modality (such as on a bone marrow transplant unit or in radiation oncology), each treatment team should designate an allied health professional, usually an oncology nurse specialist, physician’s assistant, or social worker, to assess and triage patients for quality-of-life problems. Even in a smaller oncology setting, such an allied health professional is often available.

In a brief, 30- to 45-minute interview, it is possible to assess the patient’s social support network, reaction to cancer, past and current mood or anxiety disorders, past and current substance abuse, current major life stresses, quality of the patient’s intimate relationship, and any sexual problems or concerns. Although conducting such an interview with each new patient requires an investment of time on the part of the health care provider, it can save valuable physician-hours by identifying patients who need more intensive mental health or social work services.

When adequate support is provided in the medical setting, a distressed patient or chaotic family is less likely to demand an inappropriate amount of time and energy from the physician actually treating the cancer.[19] Patients also feel that they have an advocate on the treatment team who knows them as individuals—a factor that can greatly enhance patient satisfaction and possibly even compliance with treatment.

Perhaps an even more efficient way to screen patients for quality-of-life problems is to ask all new patients to fill out a questionnaire designed to measure quality-of-life concerns for cancer patients. Several of these are available that include subscales to measure sexual function and satisfaction. Patients who indicate specific sources of distress on the questionnaire can then be evaluated further and referred for needed services.

The most thorough, most detailed of these quality-of-life questionnaires is the Cancer Rehabilitation and Evaluation System (CARES).[20] It includes several questions about sexual function and satisfaction, as well as providing information on concerns about marital or dating relationships. The Functional Assessment of Cancer Therapy (FACT) has the advantage of brevity and is available in both a general version and several site-specific versions that assess sexual symptoms more extensively.[21]

At follow-up visits during or after cancer treatment, a brief questionnaire or face-to-face assessment of quality of life, including sexuality, should also be routine. Sexual problems, in particular, often become more apparent, or at least more distressing, during the first months after a patient finishes active treatment.

Extent of Counseling

Once patients with sexual problems or concerns have been identified, most do not require extensive medical or psychological treatment. Rather, they need information about the impact of cancer treatment on sexuality and suggestions for getting their sex life back to normal.

In a review of close to 400 patients who consulted a psychologist in a cancer center for sexual rehabilitation, 73% were seen only once or twice.[22] For a subset of patients who provided follow-up data, about 64% reported some improvement in their sexual problems. Thus, a large majority of patients can benefit from brief counseling.

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