Barbershop owner and community health advocate Emerson L. Tillman interacts with men in this Gulf Coast community all day long. And while he does, men often share their health concerns.

“People tell their barbers things they don’t tell their wives or their doctors,” says Tillman. “In my outreach efforts to barbershops and also churches, I encounter many men who have been treated for prostate cancer. These men share their experiences with me and express their concerns about their quality of life. I engage men in conversations about health issues related to prostate cancer treatment because there is not much information available to them.”

In 2008, the nearby H. Lee Moffitt Cancer Center and Research Institute began working with Tillman as a health advocate. He had previously participated in numerous prostate-cancer advocacy, research, and outreach efforts, primarily targeting African-American communities. Tillman teamed up with Brian M. Rivers, PhD, MPH, in developing an iPad app targeted to men newly diagnosed with prostate cancer. The app is intended to help them understand their treatment options and make their choice.

Often Not an Easy Choice

That decision is often difficult. The list of treatments for prostate cancer is unusually long and includes various types of surgery, radiation therapy, and hormonal therapies. A patient will often receive a recommendation in the specialty (say, surgery or radiology) most familiar to his clinician, which may not be the treatment that best suits the patient’s needs.

A lot of times in educational materials you’ll read a lot of information before you finally get to the part that interests you. This particular app lets you pick and choose.

Emerson L. Tillman Barbershop Owner, Community Health Advocate

Survival is high with all standard treatments. When prostate cancer is diagnosed early, about 90 percent of patients are alive after 10 years. The differences among treatments lie primarily in potential side effects—such as incontinence and sexual dysfunction—that can have a serious impact on a man’s quality of life. Another approach often recommended when the cancer is detected very early is to submit to careful monitoring but not undergo any treatment unless the condition worsens. In Rivers’ previous research, many men said they weren’t given enough information to make an informed decision about which strategy to choose, which often led to regret and distress for them and their partners.

"It's really important for the patient to be involved in the decision-making process, consider his values and preferences, and understand any potential late or long-term effects of the decision," Rivers says.

The app—a personalized health-information navigator—presents evidence-based information via maps, video, graphs, and text. Users can choose their preferred educational path. The app explains basic concepts as it moves through the entire continuum of care, from screening to diagnosis, treatment, side effects, and survivorship.

Bryan Rivers app
The iPad application aims to inform prostate cancer patients and their caregivers about what the condition and their options for treatment.
Courtesy Brian Rivers

Community sites, along with various medical settings, served as an early testing ground for the app’s use and acceptability among men. “I found that the app was very user-friendly,” Tillman says. “A lot of times in educational materials you’ll read a lot of information before you finally get to the part that interests you. This particular app lets you pick and choose.”

Does an App Improve Decision Making?

In Rivers’ PCORI-funded study, which will be carried out in medical settings, 300 newly diagnosed patients with prostate cancer, each with his caregiver, will be randomly assigned to one of two groups. During a six-week period, one group will use the app and the other will receive printed information booklets from the National Cancer Institute. A specially trained layperson called a community navigator will guide the participants through the material, whether the app or the booklets, which the participants will also take home to review at their leisure.

Over the next three years, both the patients and their caregivers will answer survey questions to determine how the information provided by the app or booklets affected their knowledge of prostate cancer, the difficulty they experienced in making their treatment decision, the degree to which the patient and his doctor shared the decision making, the patient’s satisfaction with the decision, and his quality of life. “We want to make sure patients are cognizant of all their treatment options and are not unduly influenced based upon the expertise or specialty of their health care providers,” Rivers says.

He stresses that the app isn’t meant to replace any of the medical care the men receive but rather “to augment and enhance and strengthen, so that the patient can be that much more involved in the process.”

We want to make sure patients are cognizant of all their treatment options and are not unduly influenced based upon the expertise or specialty of their health care providers.

Brian M. Rivers, PhD, MPH H. Lee Moffitt Cancer Center and Research Institute

Who Might Benefit Most?

Rivers and his colleagues will also see if they can identify which men and their caregivers are most likely to benefit from the app. They predict that the men with low education and income levels or who belong to a minority group will benefit most because those men typically receive less information or the information is difficult for them to understand.

Tillman will chair a Prostate Cancer Advisory Roundtable that will inform and guide all phases of the research project and help maintain communication between Moffitt Cancer Center and the community. Stakeholders from the medical, advocacy, and public health communities, as well as prostate cancer patients and caregivers, are expected to participate in this advisory group. Education and awareness about the study and its findings are Tillman’s priority. “There’s a lot of misinformation out there,” he says. “It’s very important to pump research results into the community."

Posted: April 8, 2014


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