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Many online health programs are created by kids from Silicon Valley who know how to make apps look pretty but have never worked with a real patient. Will2Love’s programs are based on over 35 years of research and clinical work by our founder, Leslie R. Schover, PhD, a psychologist who spent 13 years on the staff of the Cleveland Clinic Foundation and a total of 21 years on the faculty of the University of Texas MD Anderson Cancer Center, until she retired in early 2016 as a tenured, full professor of Behavioral Science. Of course she had many wonderful colleagues and team members who made those studies happen. The research behind Will2Love was funded by the National Cancer Institute, the American Cancer Society, the Lance Armstrong Foundation (before it became Livestrong), and the University of Texas MD Anderson Cancer Center, Duncan Family Institute for Cancer Prevention and Risk Assessment. So we believe in “hard” science, even if we are not biologists who work in a “wet” lab! (We get to have a little fun talking about sex!)
Our programs have been tested in clinical trials, with positive results, published in respected journals. Here is a summary of the research behind Sexual Health and Motherhood for Women and Sexual Health and Fatherhood for Men. We present the clinical trials separately for men, women, and AYA (adolescent and young adult) cancer survivors and their partners. We also divide them into direct studies that tested current or earlier versions of these web sites and indirect studies that helped to develop the programs.
Clinical Trials on Our Program for Women
Direct Studies of Our Web Sites
What we found: 58 survivors of either a breast or gynecological cancer were assigned randomly either to use our female web site as self-help for 12 weeks, or to have an extra 3 in-person counseling sessions plus the web site. For all participants, very significant improvements occurred in questionnaires measuring sexual function and satisfaction, emotional distress, and quality of life after cancer. The counseled group improved significantly more on the sexuality measures during the 12 weeks of treatment. However, the self-help group spent more time using the web site during the next 6 months, so by that time, the two groups looked very similar. Women rated the program positively and both groups spent an average of 2 and ½ hours on the web site. Schover LR, Yuan Y, Fellman BM, Odensky E, Lewis PE, Martinetti P. Efficacy trial of an internet-based intervention for cancer-related female sexual dysfunction. Journal of the National Comprehensive Cancer Network 11:1389-97, 2013.
What we found: Aromatase inhibitors are a hormone therapy that causes severe vaginal dryness and pain with sex. 57 women in their first month of hormone therapy were given a detailed handout on preventing pain during sex. Two-thirds also got access to our web site, up to 9 coaching calls, and a kit with a vaginal dilator, 6 months of vaginal moisturizer, and a vaginal lubricant. As a group, women avoided major losses of sexual function over the next 12 months, but the extra treatment had little more effect than the handout alone. One of the vaginal moisturizers was especially helpful. Only 9% of women stopped having partner sex compared to 24% in our previous survey of women after 2 years of aromatase inhibitors. Advani P, Brewster A, Baum GP, Schover LR. A pilot randomized trial to prevent sexual dysfunction in women starting adjuvant aromatase inhibitor therapy. Article in preparation.
What we found: We developed a workbook for African-American breast cancer survivors covering menopause, sexuality, fertility, and health of children. We trained peer counselors to spend 3 in-person sessions with participants, discussing the workbook. 60 women were randomly assigned either to be counseled immediately or after a 3-month waitlist period. Nothing improved during the waitlist. After counseling, knowledge about reproductive health, emotional distress, and menopause symptoms improved significantly. Almost all rated the workbook as very easy to understand (94%) and their counselor as very skillful (98%). Schover LR, Jenkins R, Sui D, Adams JH, Marion MS, Jackson KE. Randomized trial of peer counseling on reproductive health in African American breast cancer survivors. Journal of Clinical Oncology 24:1620-26, 2006.
What we found: This national trial tested our peer counseling further. 300 women were assigned randomly either to get the workbook plus 3 in-person sessions with a trained peer counselor or the workbook plus up to 30 minutes of telephone counseling on request. Both groups of women improved significantly in knowledge, decreased in distress, and had decreased hot flashes. Sexually active women had improved sexual function. However, peer counseling was not better than the workbook plus a little phone contact. The SPIRIT program was rated very useful by 66% of women. Schover LR, Rhodes MM, Baum G, Adams JH, Jenkins R, Lewis P, Jackson KE. Sisters Peer Counseling in Reproductive Issues After Treatment (SPIRIT): A peer counseling program to improve reproductive health among African-American breast cancer survivors. Cancer 117:4983-92, 2011.
What we found: Our colleagues at Memorial Sloan-Kettering Cancer Center based a 4-session sex therapy group partly on our programs. 70 women with rectal or anal cancer were randomly assigned to the in-person group or to usual care. The group improved sexual function somewhat in sexually active women, although sex got a little worse again 8 months later. DuHamel K, Schuler T, Nelson C, Philip E, Temple L, Schover L, Baser RE, Starr TD, Cannon K, Jennings S, Jandorf L, Carter J. The sexual health of female rectal and anal cancer survivors: Results of a pilot randomized psycho-educational intervention trial. Journal of Cancer Survivorship 110:553-63, 2016.
Clinical Trials on Our Program for Men
Direct Studies of Our Web Sites
What we found: After a man’s treatment for prostate cancer, 115 couples were assigned randomly either to a waiting list, to 3-session in-person sex therapy program, or to the same program delivered on a web site with just email contact with the therapist. Another 71 couples went directly to the online program. The in-person and online formats were equally effective, with significant improvements in both men and their partners in sexual function and satisfaction. In the online group, improvements were greater in men who completed at least 75% of the program. Improvements were lasting at 1-year follow-up. Schover LR, Canada AL, Yuan Y, Sui D, Neese L, Jenkins R, Rhodes MM. A randomized trial of internet-based versus traditional sexual counseling for couples after localized prostate cancer treatment. Cancer 118:500-9, 2012.
What we found: 29 men used the current version of our web site for 20 weeks, in a “pragmatic” trial designed to mimic real world conditions. Men spent an average of over 2 ½ hours on the web site and had improved scores on sexual function and satisfaction. 41% shared the site with a partner. 56% of men rated the site as helpful in understanding cancer’s impact on sex and 34% at each time point reported using it to make decisions about their care or felt it had improved their sexual satisfaction. Phone coaching was optional, but 4 men out of 29 (14%) used it, and 86% of this group rated it very helpful. Schover LR, Odensky E, Schneider E, Wang R. Article in preparation.
What we found: Our colleagues in Australia created a program for prostate cancer survivors and partners, based on our work. 189 couples after radical prostatectomy were assigned randomly either to usual care, or to get a DVD and phone coaching from a trained nurse or a trained peer counselor. At 1-year follow-up, men in the peer or nurse intervention were more likely to be using medical treatments for erection problems but did not have overall better sexual function or satisfaction than men in usual care. Chambers SK, Occhipinti S, Schover L, Nielsen L, Zajdlewicz L, Clutton S, Halford K, Gardiner RA, Dunn J. A randomised controlled trial of a couples-based sexuality intervention for men with localised prostate cancer and their female partners. Psychooncology 24:748-56, 2015.
Clinical Trials on Our AYA Content
Direct Studies of Our Web Sites
What we found: We created a multimedia educational tool for men considering banking sperm. It was viewed on a CD-ROM. 20 male cancer patients eligible to bank sperm were randomly assigned to use the tool before vs. after completing questionnaires. Patients had significantly less conflict about the choice whether or not to bank sperm after using the program, though their knowledge did not get significantly better. Patients rated the program as easy to use, informative, and addressing their concerns. Huyghe E, Martinetti P, Sui D, Schover LR. Banking on Fatherhood: pilot studies of a computerized educational tool on sperm banking before cancer treatment. Psychooncology 18:1011-4, 2009.
What we found: We created a workbook for AYA cancer survivors covering sexual development and function, body image, fertility, prevention of sexually transmitted disease and unintended pregnancy, and relationships. 21 patients, aged 15 to 25 years were assigned randomly to complete the program (workbook plus 2 in-person counseling sessions), either immediately or after a waiting list period. Their knowledge about sex, body image, emotional distress improved, with gains maintained at 3-month follow-up. Canada AL, Neese LE, Sui D, Schover LR. Pilot intervention to enhance sexual rehabilitation for couples after treatment for localized prostate carcinoma. Cancer 104:2689-700, 2005.