Article

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: 4.04). 04/2011; 20(4):378-86. DOI: 10.1002/pon.1738
Source: PubMed

ABSTRACT 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.

1 Bookmark
 · 
117 Views
  • Source
    [Show abstract] [Hide abstract]
    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 11/2014; DOI:10.1080/00224499.2014.928663
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: IntroductionMore than 70,000 new cases of bladder cancer are diagnosed in the United States annually; with 75% being non-muscle-invasive (NMIBC). Research examining sexual dysfunction in bladder cancer survivors is limited, and previous studies have focused on cystectomy patients.AimsTo evaluate the impact of sexual dysfunction on NMIBC survivors.Methods Mixed-methods data collection integrated a quantitative survey (Study 1; n = 117) and semi-structured qualitative interviews (Study 2; n = 26) from a non-overlapping sample of NMIBC survivors. We performed descriptive and classification and regression tree (CART) analyses of survey data and qualitative analysis of interviews.Main Outcome MeasuresSelf-reported sexual activity, interest in sex, and physiologic symptoms (e.g., male erectile/ejaculatory difficulties, female vaginal dryness) over the previous 4 weeks; partner communication about sexuality; contamination concerns; illness intrusiveness.ResultsParticipants in these studies averaged 65 years of age (mean and median) and were male (77%), white (91%), and married (75%). Survey (Study 1) results linked NMIBC treatment to sexual symptoms and relationship issues. Many participants reported sexual inactivity (38.8%). Sexually active participants reported erectile difficulties (60.0%), vaginal dryness (62.5%), and worry about contaminating partner with treatment agents (23.2%). While almost one-half reported the usefulness of talking with partners about sexual function, only one-fifth of participants reported sharing all concerns with their partners. CART analysis supported the importance of communication.One-half of interviewees (Study 2) reported sexual dysfunction. Two-thirds reported negative impacts on their relationships, including perceived loss of intimacy and divorce; over one-third were sexually inactive for fear of contaminating their partner or spreading NMIBC.Conclusions Survivors' sexual symptoms may result from NMIBC, comorbidities, or both. These results inform literature and practice by raising awareness about the frequency of symptoms and the impact on NMIBC survivors' intimate relationships. Further work is needed to design symptom management education programs to dispel misinformation about contamination post-treatment and improve quality of life. Kowalkowski MA, Chandrashekar A, Amiel GE, Lerner SP, Wittmann DA, Latini DM, and Goltz HH. Examining sexual dysfunction in non-muscle-invasive bladder cancer: Results of cross-sectional mixed-methods research. Sex Med **;**:**–**.
    04/2014; DOI:10.1002/sm2.24
  • [Show abstract] [Hide abstract]
    ABSTRACT: The purpose of this study was to assess the invariance of a culturally competent multi-lingual unmet needs survey. A cross-sectional study was conducted among immigrants of Arabic-, Chinese- and Greek-speaking backgrounds, and Anglo-Australian-born controls, recruited through Cancer Registries (n = 591) and oncology clinics (n = 900). The survey included four subscales, with newly developed items addressing unmet need in culturally competent health information and patient support (CCHIPS), and items adapted from existing questionnaires addressing physical and daily living (PDL), sexuality (SEX) and survivorship (SURV) unmet need. The survey was translated into Arabic, Chinese and Greek. Rasch analysis was carried out on the four domains. Whilst many items were mistargeted to less prevalent areas of unmet need, causing substantial floor effects in person estimates, reliability indices were acceptable. The CCHIPS domain showed differential item functioning (DIF) for cultural background and language, and the PDL domain showed DIF for treatment phase and gender. The results for SEX and SURV domains were limited by floor effects and missing responses. All domains showed adequate fit to the model after DIF was resolved and a small number of items were deleted. The study highlights the intricacies in designing a culturally competent survey that can be applied to culturally and linguistically diverse groups across different treatment contexts. Overall, the results demonstrate that this survey is somewhat invariant with respect to these factors. Future refinements are suggested to enhance the survey's cultural competence and general validity.
    Quality of Life Research 05/2014; 23(10). DOI:10.1007/s11136-014-0717-5

Full-text (2 Sources)

Download
41 Downloads
Available from
May 21, 2014