For many of the 11.1 million patients with cancer and cancer survivors in the United States [1
], sexual functioning is an important component of quality of life. For a variety of cancer types, estimates of sexual dysfunction after treatment range from 40% to 100% and involve both physical and psychological causes [2
]. Sexual dysfunction can cause ongoing emotional distress by reinforcing negative body image [3
], disrupting relationships [2
], and reminding patients of their cancer experience [4
]. On the other hand, maintaining or regaining sexual function can act as an anchor during the disease experience, allowing patients to feel “normal.” Sexual dysfunction may develop at any point during the disease course, including at diagnosis and during treatment and posttreatment follow-up [5
]. Unlike some other side effects of treatment, sexual problems commonly do not resolve in the first 2 years of disease-free survival but may remain constant and relatively severe [2
Communication about sexuality with health care providers is important for a number of reasons. Before treatment, patients should be informed about common sexual side effects associated with cancer treatments to help inform their treatment choices. Patients may elect to pursue treatments that carry less risk for sexual problems, such as modified surgical approaches [7
], adjustments to the type and dosage of chemotherapy [8
], or careful selection of the timing and maintenance schedule of hormonal therapy [10
]. During and after treatment, patient-provider communication is critical to the identification and treatment of sexual problems that may be distressing for patients and impair their quality of life.
However, open communication may be particularly difficult when it comes to discussing sex. For nearly 3 decades, researchers have documented barriers and opportunities for patient-provider communication about sexual matters in oncology [2
]. Yet, discussions about sexuality rarely occur [16
], and there are no clear guidelines for addressing sexuality during treatment and follow-up visits [2
]. There is lack of time during office visits [22
], and clinicians may feel uncomfortable with or unknowledgeable about the topic [16
]. Patients may be too embarrassed to discuss sexual concerns unless prompted [23
], or they may think that if the issue is important, their provider will raise it. Moreover, treatments for sexual dysfunction are rarely reimbursed by health insurers.
Quantitative surveys that include questions about whether patients have been asked about sexual issues by their health care providers have been undertaken among patients with breast cancer [9
], prostate cancer [4
], colorectal and gynecologic cancers [13
], and non-Hodgkin lymphoma [24
]. Other work has involved semistructured interviews with health care professionals and patients [16
]. This previous work explored patients’ needs and desires for information about sex, ascertained what information was provided and by whom, and described health care providers’ knowledge of patients’ sexual problems and concerns. Two of these studies focused exclusively on women with ovarian cancer [16
]. To our knowledge, only a single small study has explored communication about sexual issues in both men and women across a variety of cancer types [20
], and no studies have systematically examined how it is related to patients’ sexual function.
Therefore, we queried a large sample of male and female cancer patients and survivors across cancer types. We also explored how asking an oncology provider about sexual problems is related to important sexual outcomes. We conducted focus groups with men and women with cancer to characterize the nature, scope, and importance of sexuality and intimacy after a cancer diagnosis [6
], and we used these data to develop survey items for the Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function measure. We then tested this measure in a large-scale survey of patients with cancer [26
]. In this paper, we describe patients’ experiences communicating with oncology professionals about sexual problems using our qualitative focus group and quantitative survey data, and we present the data stratified by cancer type, sex, and age. We also tested associations between asking an oncology professional about sexual problems and patients’ sexual function. We expected that greater needs for communication would be associated with worse sexual function.