Patient experiences with communication about sex during and after treatment for cancer

Abstract

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.

Couple-Based Psychosexual Support Following Prostate Cancer Surgery: Results of a Feasibility Pilot Randomized Control Trial

“…The intervention was delivered in third-sector premises, away from the pressures of a busy outpatient hospital urology clinic where there is usually limited time to discuss psychosexual concerns during healthcare consultations (Flynn et al, 2012;Forbat et al, 2012). 43 couples were randomised to the two arm trial of couple support or treatment as usual.…”

The clinical communication and information challenges associated with the psychosexual aspects of prostate cancer treatment

“…Evidence suggests that there is variability in how well this is achieved in clinical practice and that clinicians inadequately address cancer patients' sexual information and support needs (Tucker, Peters & Speer, 2016;Flynn et al, 2012;Gilbert, Perz and Ussher, 2016;NICE, 2014, p. 115ff;Ussher et al, 2013;Watson et al, 2015;Zhou et al, 2016). For example, in their observational study of communication in British PC clinics, Forbat et al (2012, p.98) note that patients' psychosexual concerns are often side-lined by clinicians, with limited opportunities 'to discuss the specific impact of prostate cancer and its treatments on sexual functioning'.…”

“…Likewise, patients may be reluctant to disclose psychosexual concerns due to embarrassment and perceptions that clinicians lack the time to discuss such issues, regarding them as trivial compared with survival (e.g., Carr, 2007;Flynn et al, 2012;Stead, Brown, Fallowfield, & Selby, 2003).…”

Development and Validation of a Single-Item Screener for Self-Reporting Sexual Problems in U.S. Adults

“…Limited patient-provider communication about sexual matters has been documented in primary care, 3,4 ob/gyn, 5 cardiology, 6 and oncology. 7,8 Patients can be reluctant to initiate discussions with their providers about sexual function, preferring that providers broach the topic. 7,9 Providers can also be reluctant to raise the subject, 10 especially if they feel they lack the knowledge or skills needed to address this issue, 11 yet there is some evidence that a pre-visit questionnaire can promote patient-provider discussions of sexual dysfunction.…”

“…7,8 Patients can be reluctant to initiate discussions with their providers about sexual function, preferring that providers broach the topic. 7,9 Providers can also be reluctant to raise the subject, 10 especially if they feel they lack the knowledge or skills needed to address this issue, 11 yet there is some evidence that a pre-visit questionnaire can promote patient-provider discussions of sexual dysfunction. 12 Given the availability of treatments and options for referrals for sexual problems, the routine assessment of sexual concerns might reduce barriers to discussing this issue while also providing a means to assess longitudinal changes in an important area of health.…”