Tendrils: A Multimedia Intervention for Women's Sexual Dysfunction after Cancer

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DESCRIPTION (provided by applicant): Long-term Objectives Aims: Sexual dysfunction is the most common long-term consequence of cancer treatment, affecting half of survivors of breast and gynecological cancer and many women treated for other cancers. Yet, few women get the help they need for sexual problems. Our primary objective is to develop and evaluate a multimedia intervention program for women with cancer-related sexual dysfunction. Tendrils: A Sexual Renewal Program for Women Surviving Cancer will: 1) explain the causes of cancer-related sexual dysfunction; 2) offer self-help strategies to prevent or overcome problems; 3) advise women on seeking appropriate medical help; and 4) possibly serve as the core of a counseling program, along with a therapist manual. Tendrils is aimed at a wide audience, from newly diagnosed to long-term survivors, across cancer sites. Material will be presented with sensitivity to religious and cultural attitudes about sexuality. Animations will illustrate anatomy and physiology. The software will let women use Tendrils in a variety of formats: over the internet, on a CD-Rom, printed out, or as downloaded digital video or audio on a handheld computer or media player. Video vignettes will illustrate problems and strategies. 4 female cancer survivors will host the program, sharing their experiences. Research Design and Methods: In Phase I, a prototype of Tendrils will be created including text, sample animation concepts, and scripts of vignettes. 10 expert professionals and cancer advocates will view the prototype on a website, as will 3 focus groups of female survivors. Feasibility will be shown if at least 75% rate Tendrils as meeting criteria for ease of use, comprehensibility, and relevance on an evaluation form. In Phase II, a revised, complete prototype of Tendrils will be created. We will recruit 240 women, 1-5-year survivors of breast or gynecological cancer, free of disease, and off active cancer treatment. Women will be randomized to 2 treatment groups, balancing cancer site, age group, menopausal status, and educational level. The self-help group will access Tendrils on a website for a 12-week period. The counseling group will access the website for 12 weeks and attend 3 sessions with a trained counselor. Women will complete online questionnaires at baseline, after treatment, and at 3-and 6-month follow-up. Time spent using the website will be recorded and women will estimate time spent weekly reading printouts, using downloaded files, or doing behavioral homework. Our primary hypothesis is that Tendrils will produce significant improvements in sexual function and satisfaction whether used on a self-help basis or with brief counseling, but that the counseling group will improve significantly more than the self-help group. Secondary hypotheses are that counseling will add more benefit for less educated women and older women. Time spent using Tendrils will be examined as a potential mediator of success. Trial outcome will be used to target marketing of Tendrils optimally. Project Relevance: Sexual problems related to cancer treatment affect approximately half of female survivors of breast or pelvic cancer and a smaller, but significant, proportion of women treated for other malignancies, e.g. at least 3 million women in the United States. In contrast to other sources of psychosocial distress, sexual dysfunction persists long after cancer treatment and is usually pervasive, diminishing sexual desire and affecting intimacy. Although the causes of these problems are known, and brief counseling is often effective at resolving them, few women have access to such information or services.