Sexual Function Measurement and Outcomes in Cancer Survivors and Matched Controls - Statistical Data Included

Journal of Sex Research, August, 2000 by Karen L. Syrjala, Thomas C. Schroeder, Janet R. Abrams, Tamara Z. Atkins, Wendy S. Brown, Jean E. Sanders, Mary A. Schubert, Julia R. Heiman

Researchers and cancer survivor advocates are focusing increased attention on sexual function as a fundamental component of quality of life. This focus is warranted by the ever-increasing numbers of cancer survivors, with a relative rate of over 50% of people diagnosed with cancer now living five or more years past initial diagnosis (American Cancer Society, 1999). While findings are still rudimentary and vary by diagnosis, type of treatment, and gender, difficulties with sexual function are some of the more prevalent long-term complications following cancer treatment (Ganz, Rowland, Desmond, Meyerowitz, & Wyatt, 1998; Syrjala et al., 1998).

A major barrier to documenting sexual problems and needs in these populations has been the lack of appropriate, well-standardized tools with which to measure explicit behaviors, specific problems, and subjective experience of sexual function appropriate for cancer survivors (Cull, 1992; Rosen, 1998). As researchers initiate clinical trials to treat sexuality difficulties, adequate measurement for evaluating outcomes is essential. To fit this purpose, we have developed and tested a measure in adult cancer survivors as well as in matched, noncancer control subjects. While the instigation for this measure derived from work with cancer survivors the tool itself is not specific to such survivors, and we believe it could be utilized in research on other populations, including physically healthy groups.

Evaluating Sexual Difficulties in Cancer Survivors

Research into the sexual lives of cancer survivors has almost exclusively focused on the prevalence of various types of sexual problems reported by these survivors. This information assists in defining types of problems that need to be assessed but does not facilitate understanding how cancer survivors adapt to these difficulties, or whether they are able to achieve sexual satisfaction despite these difficulties.

Using the phases of sexual response (American Psychiatric Association [APA], 1994), research on cancer survivors has indicated that lack of sexual desire is reported by 3% to 11% of survivors, arousal problems by 9% to 15%, and orgasm infrequency or inability by 4% to 12% of the survivor population surveyed (Andersen, 1993; Andersen, Anderson, & deProsse, 1989; Andersen, Van der Does, & Anderson, 1992; Schover, Fife, & Gershenson, 1989; Spector & Carey, 1990). These deficits within phases do not fully reflect the diversity of problems cancer survivors have reported. Furthermore, prevalence data are subject to the possible measurement inadequacies described in this paper.

As a normative comparison, Lauman, Paik, and Rosen (1999) examined rates of sexual dysfunction within a national probability sample in the United States. They found that 43% of women and 31% of men reported some component of sexual dysfunction. Lower education, not being married, and emotional or stress-related problems increased the risk of sexual dysfunction for both genders. Poor health increased risk only for dyspareunia in women. The high rates of reported sexual difficulties in normative samples and the varying rates reported by cancer survivors highlight the necessity of standardizing assessment tools to permit comparisons across diseases and with noncancer norms.

Most sexual function research in oncology has been investigated separately by gender and disease. For women, assessment has focused on psychosexual problems following treatments for breast and gynecologic cancers (Andersen, 1990; Andersen et al., 1989; Bergmark, Avall-Lundqvist, Dickman, Henningsohn, & Steineck, 1999; Bines, Oleske, & Cobleigh, 1996; Ganz, 1997; Ganz et al., 1998; Kaplan, 1992; Lamb, 1995; Loprinizi et al., 1997; Schag, Ganz, Polinsky, Fred, Hirfi, & Petersen, 1993; Schover, 1994; Schover et al., 1995). For example, 23% to 28% of breast cancer survivors reported vaginal discomfort to be very severe during intercourse (Loprinizi et al., 1997). Symptoms may be most common in the first year after treatment, as Schag and colleagues (1993) found that from 40% to 57% of breast cancer survivors experienced difficulties with vaginal lubrication or reaching orgasm during sexual activity in the first year after breast cancer treatment. In women with cervical cancer, lubrication (26%) and vaginal elasticity (23%) were the most common problems (Bergmark et al., 1999). Type of treatment had little if any effect on the prevalence of vaginal changes reported after cervical cancer (Bergmark et al., 1999), whereas with breast cancer, type of treatment had more substantial influence on sexual outcomes (Ganz et al., 1998).

For men, as with women, sexual side effects are usually assessed according to the site of and treatment for the disease, with instruments specific to disease, or with sexual function as a small component of broader quality of life evaluation (Baruch et al., 1991; Heinrich-Rynning, 1987; Jonker-Pool et al., 1997; Little & Howard, 1998; Schover, 1987). After lung cancer, prostate cancer is the most common form of cancer in males (Heinrich-Rynning, 1987). Its treatment has had varying reported effects on the sexual function of male cancer survivors. Even with this variability, however, over 60% of prostate cancer survivors report sexual dissatisfaction regardless of the form of treatment (Shrader-Bogen, Kjellberg, McPherson, & Murray, 1997). Following radical prostatectomy, retrograde ejaculation has been the most common sexual side effect, occurring in 75% to 80% of patients (Heinrich-Rynning, 1987); while anywhere from 70% to 90% of men report they cannot achieve erections sufficient for sexual penetration (Schover, 1987; Shrader-Bogen et al., 1997). Research on prostate cancer patients indicates those treated with radiotherapy experience sexual side effects, with a widely varying range of 22% to 84% reporting some form of erectile dysfunction (Schover, 1987; Shrader-Bogen et al., 1997). Over 50% of male bladder cancer survivors also report sexual difficulty or dysfunction, with erectile dysfunction, decreased libido, or sexual dissatisfaction rates depending on treatment (Little & Howard, 1998; Schover, 1987). Finally, 10% to 20% of men treated for testicular cancer noted a loss of interest in sexual activity, decrease in libido, or erectile dysfunction (Jonker-Pool et al., 1997; Schover, 1987).