Sexual functioning along the cancer continuum: Focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS(R)

Center for Clinical and Genetic Economics, Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC 27715, USA.
Psycho-Oncology (Impact Factor: 2.44). 04/2011; 20(4):378-86. DOI: 10.1002/pon.1738
Source: PubMed


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.
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.
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.
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.

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    • "Despite some earlier research indicating that sexuality could be a sensitive topic and difficult to discuss in a focus group format (Kent et al., 2012), the present study using online FGDs provided rich material. Overall, the participants were open and interacted well with each other, which is in line with results from another study using focus groups to explore sexual functioning among cancer patients (Flynn et al., 2011). The participants in the present study expressed different views but seldom disagreements. "
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    • "Patients who want to remain sexually active and=or intimate, but who do not desire or are not capable of sexual intercourse, are nevertheless deserving of—and desirous of—information about sexual health. Findings from this study can guide the types of information offered by medical providers to patients and their partners, help direct the development of clinical interventions, and help support the sexual and relational adjustment of women diagnosed with MBC (Badr et al., 2010; Flynn et al., 2010; Stausmire, 2004). This study provides necessary patient-based data for those treating women diagnosed with MBC to sufficiently address the unique conditions that this population faces and to include women's sexuality near the end of life as an essential component of the evolving discussion of sexuality and cancer. "
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    • "The changed roles can affect sexuality and the relationship; therefore, open and respectful communication is often one of the best approaches to make the relationship and family work again (Hordern and Street, 2007; Park et al., 2009) In our study, respondents attached great importance to talking to their partner about these changes, and humour was used as a communication tool in conversations about their sexuality and sex life. This is comparable with the findings of Flynn et al. (Flynn et al., 2011), who found that cancer patients experienced a great need to talk to their partner about: fear of touching or causing pain, sexual desire, sexual appearance and mutual understanding of sexual changes. It is therefore of great importance that patients following treatment are informed about the possible changed roles and how it can affect sexuality and the partnership, and finally encourage them to talk with their partner about these changes. "
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