More than 3.5 million male cancer survivors in the United States have long-term, severe sexual dysfunction, yet fewer than 20 percent seek professional help.
And that’s where an online tool known as hardtimes: Cancer and Men’s Sexual Health
comes in. The website is designed to help men with prostate or other types of cancer deal with sexual dysfunction and other common side effects of treatment.
The site, and also a different online intervention designed specifically for men with prostate cancer, were showcased at the 2015 World Congress on Psycho-Oncology by their developers in the United States and Australia. According to those developers, the interventions illustrate how tech tools can be successfully deployed to address the psychosocial needs of patients, survivors and their caregivers.
was introduced by Leslie R. Schover, a professor at UT MD Anderson Cancer Center. She explained that the website builds on the results of three research studies published in the peer-reviewed journal Cancer
that examined the benefits of providing practical information online and through phone coaching for users seeking advice on such topics as:
Coping with incontinence or ostomy
How to choose a treatment for erectile dysfunction
How to find expert medical or psychological help
Keeping relationships healthy
Drawing upon patient and survivor interviews, the program also presents two case studies: one is a series of stories about a young man with testicular cancer, and another focuses on an African American man with prostate cancer and his spouse trying to get back to a normal sex life.
As part of their research, Schover and colleagues asked users to rate the website; the users reported that they generally found the information not too overwhelming, and that it helped with their partner relationships.
Schover’s research team is currently recruiting participants for a clinical trial evaluating the website in more depth. Although the trial had been open only to men over age 18 who had been diagnosed with cancer and been patients at either UT MD Anderson Cancer Center in Houston or Cooper MD Anderson Cancer Center in Camden, N.J., Schover said that she recently received permission from her institutional review board to recruit nationally.
Trial participants will fill out a baseline questionnaire and have the option to sign up for phone coaching. Schover hopes the process will illuminate “how easy it will be to recruit for this trial, how many men will request phone coaching,” and whether the new beta-tested version of the program will be “stickier, which is web language (to describe a trend toward visitors) using the website longer and coming back to it,” Schover explains.
Interested individuals can visit http://bit.ly/1OEYpal
to learn more about hardtimes
and how to enroll in the trial.
The other web-based invention, specifically aimed at men with prostate cancer and their caregivers, is PROSTMATE (https://prostmate.org.au
). Addie Wooten, director of clinical and allied health research for the Australian Prostate Cancer Research Centre, explained that the site is fully launched and open to anyone, and thus is being studied in an “active research” program.
Wooten said that the need for such a resource is great, with 74 percent of men with prostate cancer reporting unmet needs related to their care. Additionally, rural access to face-to-face consultations is especially challenging in her home country, where many people live in remote areas. She said the portal is designed to improve the health and well-being of everyone affected by prostate cancer, including family members — offering a central place for individually tailored information and an access point to prostate cancer nurses and psychologists through its telehealth feature.
Feedback on the site has been overwhelmingly positive, said Wooten, adding that social media proved very effective in spreading the word. Since the site’s launch in November 2013, more than 1,500 members have joined the program, 35 percent of whom live in rural locations. One in four men using PROSTMATE is over 70 years of age, which Wooten said highlights the fact that technology is not a barrier for this population.
Another advantage of the online environment, Wooten pointed out, is that it offers access to information and support in a nonthreatening way, thus avoiding the stigma which some men may feel about seeking out emotional support.
She emphasized the multidisciplinary nature of the program, noting that she works with all specialties, including nursing, medical and radiation oncologists, and physical therapists.
“It really is a program that aims to comprehensively support men with prostate cancer and their families,” she says.