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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Available from: Kevin P Weinfurt, Sep 30, 2015
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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. "
    European Journal of Oncology Nursing 08/2015; DOI:10.1016/j.ejon.2015.07.009 · 1.43 Impact Factor
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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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    ABSTRACT: While research on the sexual health of women with early stage cancer has grown extensively over the past decade, markedly less information is available to support the sexual health needs of women diagnosed with advanced breast cancer. Semistructured interviews were conducted with 32 women diagnosed with metastatic breast cancer (ages 35 to 77) about questions they had concerning their sexual health and intimate relationships. All participants were recruited from a comprehensive cancer center at a large Midwestern university. Three themes were examined: the role of sexual activity and intimate touch in participants' lives, unmet information needs about sexual health, and communication with medical providers about sexual concerns. Findings indicated that sexual activities with partners were important; however, participants worried about their own physical limitations and reported frequent physical (e.g., bone pains) and vaginal pain associated with intercourse. When women raised concerns about these issues in clinical settings, medical providers often focused exclusively on vaginal lubricants, which did not address the entirety of women's problems or concerns. In addition, women diagnosed with metastatic breast cancer reported needing additional resources about specialized vaginal lubricants, nonpenetrative and nongenitally focused sex, and sexual positions that did not compromise their physical health yet still provided pleasure.
    The Journal of Sex Research 07/2015; 52(6). DOI:10.1080/00224499.2014.928663 · 2.53 Impact Factor
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    • "Breast cancer is the second most common cancer worldwide and the most commonly diagnosed female cancer [1]. With high 5-year survival rates (76–92 %) there are increasing numbers of breast cancer survivors [2], leading to a focus on aspects of quality of life (QOL) [3], due to the long-term effects of cancer and its treatment [4, 5]. Most women (50–75 %) diagnosed with breast cancer report persistent difficulties with sexual functioning [6–8]. "
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    ABSTRACT: Breast cancer patients are at increased risk of sexual dysfunction. Despite this, both patients and practitioners are reluctant to initiate a conversation about sexuality. A sexual dysfunction screening tool would be helpful in clinical practice and research, however, no scale has yet been identified as a "gold standard" for this purpose. The present review aimed at evaluating the scales used in breast cancer research in respect to their psychometric properties and the extent to which they measure the DSM-5/ICD-10 aspects of sexual dysfunction. A comprehensive search of the literature was conducted for the period 1992-2013, yielding 129 studies using 30 different scales measuring sexual functioning, that were evaluated in the present review. Three scales (Arizona Sexual Experience Scale, Female Sexual Functioning Index, and Sexual Problems Scale) were identified as most closely meeting criteria for acceptable psychometric properties and incorporation of the DSM-5/ICD-10 areas of sexual dysfunction. Clinical implications for implementation of these measures are discussed as well as directions for further research.
    Breast Cancer Research and Treatment 09/2013; 141(2). DOI:10.1007/s10549-013-2685-9 · 3.94 Impact Factor
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