This study provides benchmark approximations of the prevalence of risky health behaviors of survivors by time since diagnosis and cancer site. As part of the collective effort to reduce late effects of cancer treatment, oncologists may be in the best position to offer initial guidance for promoting healthy lifestyle behaviors among cancer survivors.

Objective We studied patients’ experiences with oncology providers regarding communication about sexual issues during and after treatment for cancer. Methods During development of the Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function measure, we collected focus group and survey data on communication with oncology professionals about sexual problems. We conducted 16 focus groups with patients and survivors (n = 109) and analyzed the discussions for major themes, including experiences discussing sex during oncology visits. During testing of the PROMIS Sexual Function measure, we assessed experiences discussing sexual problems with oncology professionals (n = 819) and measured bivariate associations between asking for information from clinicians and sexual function and satisfaction with sex life. Results Most patients and survivors (74%) thought discussions with oncology professionals about sexual problems were important, but whether they had ever received information about sexual function from a provider varied by cancer type (23% lung, 29% breast, 39% colorectal, and 79% prostate). Those who had asked an oncology professional about sexual problems had significantly greater interest in sexual activity as well as more sexual dysfunction. Conclusions Sexual problems are a widespread concern among patients and survivors, but there is much variation in experiences of communication about sexual issues and many patients do not receive the information they need from their oncology providers. There are large differences in sexual function between patients who do and do not ask providers about sexual problems. Sexual health has yet to be fully integrated into oncology care, even for cancers involving sex organs.

Introduction Discussions about sexual health are uncommon in clinical encounters, despite the sexual dysfunction associated with many common health conditions. Understanding of the importance of sexual health and sexual satisfaction among US adults is limited. Aim To provide epidemiologic data on the importance of sexual health for quality of life and people’s satisfaction with their sex lives and to examine how each is associated with demographic and health factors. Methods Data are from a cross-sectional, self-report questionnaire from a sample of 3515 English-speaking US adults recruited from an online panel that uses address-based probability sampling. Main Outcome Measures We report ratings of importance of sexual health to quality of life (single item with 5-point response) and the PROMIS® Satisfaction with Sex Life score (5 items, each with 5-point responses, scores centered on the US mean). Results High importance of sexual health to quality of life was reported by 62.2% of men (95% CI, 59.4%–65.0%) and 42.8% of women (95% CI, 39.6%–46.1%; P < .001). Importance of sexual health varied by sex, age, sexual activity status, and general self-rated health. For the 55% of men and 45% of women who reported sexual activity in the previous 30 days, satisfaction with sex life differed by sex, age, race/ethnicity (among men only), and health. Men and women in excellent health had significantly higher satisfaction than participants in fair or poor health. Women with hypertension reported significantly lower satisfaction (especially younger women), as did men with depression or anxiety (especially younger men). Conclusion In this large study of US adults’ ratings of the importance of sexual health and satisfaction with sex life, sexual health was a highly important aspect of quality of life for many participants, including participants in poor health. Moreover, participants in poorer health reported lower sexual satisfaction. Accordingly, sexual health should be a routine part of clinicians’ assessments of their patients. Health care systems that state a commitment to improving patients’ overall health must have resources in place to address sexual concerns. These resources should be available for all patients across the life span.

Introduction The Patient-Reported Outcomes Measurement Information System (PROMIS)® Sexual Function and Satisfaction measure (SexFS) version 1.0 was developed with cancer populations. There is a need to expand the SexFS and provide evidence of its validity in diverse populations. Aim The aim of this study was to describe the development of the SexFS v2.0 and present preliminary evidence for its validity. Methods Development built on version 1.0, plus additional review of extant items, discussions with 15 clinical experts, 11 patient focus groups (including individuals with diabetes, heart disease, anxiety, depression, and/or are lesbian, gay, bisexual, or aged 65 or older), 48 cognitive interviews, and psychometric evaluation in a random sample of U.S. adults plus an oversample for specific sexual problems (2281 men, 1686 women). We examined differential item functioning (DIF) by gender and sexual activity. We examined convergent and known-groups validity. Results The final set of domains includes 11 scored scales (interest in sexual activity, lubrication, vaginal discomfort, clitoral discomfort, labial discomfort, erectile function, orgasm ability, orgasm pleasure, oral dryness, oral discomfort, satisfaction), and six nonscored item pools (screeners, sexual activities, anal discomfort, therapeutic aids, factors interfering with sexual satisfaction, bother). Domains from version 1.0 were reevaluated and improved. Domains considered applicable across gender and sexual activity status, namely interest, orgasm, and satisfaction, were found to have significant DIF. We identified subsets of items in each domain that provided consistent measurement across these important respondent groups. Convergent and known-groups validity was supported. Conclusions The SexFS version 2.0 has several improvements and enhancements over version 1.0 and other extant measures, including expanded evidence for validity, scores centered around norms for sexually active U.S. adults, new domains, and a final set of items applicable for both men and women and those sexually active with a partner and without. The SexFS is customizable, allowing users to select relevant domains and items for their study.

Introduction We describe the development and validation of the PROMIS Sexual Function and Satisfaction (PROMIS SexFS) measures version 1.0 for cancer populations. Aim To develop a customizable self-report measure of sexual function and satisfaction as part of the U.S. National Institutes of Health PROMIS® Network. Methods Our multidisciplinary working group followed a comprehensive protocol for developing psychometrically robust patient reported outcome (PRO) measures including qualitative (scale development) and quantitative (psychometric evaluation) development. We performed an extensive literature review, conducted 16 focus groups with cancer patients and multiple discussions with clinicians, and evaluated candidate items in cognitive testing with patients. We administered items to 819 cancer patients. Items were calibrated using item response theory and evaluated for reliability and validity. Main Outcome Measures The PROMIS Sexual Function and Satisfaction (PROMIS SexFS) measures version 1.0 include 79 items in 11 domains: interest in sexual activity, lubrication, vaginal discomfort, erectile function, global satisfaction with sex life, orgasm, anal discomfort, therapeutic aids, sexual activities, interfering factors, and screener questions. Results In addition to content validity (patients indicate that items cover important aspects of their experiences) and face validity (patients indicate that items measure sexual function and satisfaction), the measure shows evidence for discriminant validity (domains discriminate between groups expected to be different), convergent validity (strong correlations between scores on PROMIS and scores on conceptually-similar older measures of sexual function), as well as favorable test-retest reliability among people not expected to change (inter-class correlations from 2 administrations of the instrument, 1 month apart). Conclusions The PROMIS SexFS offers researchers a reliable and valid set of tools to measure self-reported sexual function and satisfaction among diverse men and women. The measures are customizable; researchers can select the relevant domains and items comprising those domains for their study.

Objective Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care. Methods We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders. Results Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain, and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers, and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer. Conclusion Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients’ sexual concerns directly.

For this report, the authors described the initial activities of the Cancer Patient-Reported Outcomes Measurement Information System (PROMIS)-Sexual Function domain group, which is part of the National Institutes of Health Roadmap Initiative to develop brief questionnaires or individually tailored assessments of quality-of-life domains. Presented are a literature review of sexual function measures used in cancer populations and descriptions of the domains found in those measures. By using a consensus-driven approach, an electronic bibliographic search was conducted for articles that were published from 1991 to 2007, and 486 articles were identified for in-depth review. In total, 257 articles reported the administration of a psychometrically evaluated sexual function measure to individuals who were diagnosed with cancer. Apart from the University of CaliforniaLos Angeles Prostate Cancer Index, the International Index of Erectile Function, and the Female Sexual Function Index, the 31 identified measures have not been tested widely in cancer populations. Most measures were multidimensional and included domains related to the sexual response cycle and to general sexual satisfaction. The current review supports the need for a flexible, psychometrically robust measure of sexual function for use in oncology settings and strongly justifies the development of the PROMIS-Sexual Function instrument. When the PROMIS-Sexual Function instrument is available publicly, cancer clinicians and researchers will have another measure with which to assess patient-reported sexual function outcomes in addition to the few legacy measures that were identified through this review.

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