App Created to Support Black Prostate Cancer Patients Post-Diagnosis

“The survivorship odds for prostate cancer in Black men are good: At the five-year point after treatment, 96% of men are alive, compared to 98% for white men. But Black men face a difficult transition from diagnosis to survivorship,” Adedipe said. “I remember having a conversation with a woman whose husband was successfully treated for prostate cancer. She said, ‘He survived the cancer, but he doesn’t feel like he’s surviving. He feels like he would have been better off dead.’

“We can talk about survivorship, but what does quality of life mean for those who are still here? There are unmet needs, especially for Black men who are coping with long-term complications,” Adedipe said.

In her research that laid the groundwork for development of the app, Adedipe interviewed three groups of Black men in the United States who had been treated for prostate cancer: those who were born in Africa, those born in the Caribbean and those born in the United States. She chose those ethnic groups because immigration to America, particularly from Africa and the Caribbean, has reshaped the demographics of Black communities in recent decades. Each group had differing experiences with cancer and the health care system, influenced by factors such as their culture, where they live and their previous encounters with health care providers.

African-born Black men, for example, are accustomed to a paternalistic health care system where it is considered rude to ask the physician questions or to consider second opinions. That leads some men to experience regret over the type of therapy they received, Adedipe said. Other Black men may live in areas with few options for treatment. And many Black men struggle to find the social support that is so important for healing. In some cases, they have hidden their cancer diagnoses from their families and friends who could support them, and they struggle to cope with side effects.

“Imagine immigrant men who have moved to this country, trying to put food on the table and navigating immigration pathways, then life throws a cancer diagnosis at them,” Adedipe said. “It can be quite lonely. They want to talk about it but are hesitant because it’s deeply personal. It can be a threat to their masculinity and how they perceive themselves. We see a lot of dynamics at play.” Adedipe’s app is designed to support men through this unfamiliar territory.

The app has been tested in an initial pilot study, with favorable results, and the new Department of Defense funding will allow Adedipe to create a larger clinical trial. Participants will be Black men from the three ethnic groups who have been diagnosed with prostate cancer. Most will be navigating post-care issues; half will use the app, while a control group will not. Because many people have smartphones, an app is an ideal vehicle for providing easy-to-digest information to an ethnically diverse group of Black prostate cancer survivors.

The app will prompt men to assess their physical and mental symptoms, then it will provide information based on their feedback, such as recommendations for reducing pain or improving sleep. Men who have received androgen deprivation therapy, a type of hormone therapy, often lose muscle mass, so they will be encouraged to lift weights and improve their nutrition. If men score high on a pain scale, they will be connected to an oncology nurse for help managing the pain or instruction to see a doctor.

“Our main objective is to test the effectiveness of this app on quality of life,” Adedipe said. “Our hypothesis is that it will be effective, not because the app is magical, but because we’re assessing symptoms, providing psychological and social support, and tailoring information to their needs.”

Another major component of Adedipe’s research is a Community Advisory Board composed of seven Black men who have survived prostate cancer, a Black physician and a Black public health scientist. Their insight has helped Adedipe shape her research questions, design the app’s content and recruit clinical trial participants. Board members have also helped her organize virtual town halls, where experts speak and Black men connect with each other by telling their stories of a cancer diagnosis.

Perry Cole, a Community Advisory Board member from Texas, was diagnosed with prostate cancer in 2021 and has since become an advocate for early detection and for men leaning on one another for support.

“One of our biggest accomplishments has been opening up and talking about what we’re going through, as well as welcoming others to join us,” he said. “We talk about what might be considered taboo topics. It helps you know that you are not alone in your struggles. We’ve also talked about how the mental health component of a cancer diagnosis is often overlooked. We have come to the conclusion that when you select an oncologist or surgeon, you also need to consider a mental health professional to help you overcome some of the stigma and natural reactions that come with cancer.

“We want to bring that message to younger generations of men as well,” Cole said. “Not waiting until they are affected by cancer, but doing some education so that, if they find themselves on this route, they have choices, and here are some ways to make the best choices possible.”

About the project

Adedipe’s research has also been funded by the National Institutes of Health. The TSET Health Promotion Research Center is named for support from TSET, the Oklahoma Tobacco Settlement Endowment Trust. Created by voters in 2000, TSET is an endowment trust established with a percentage of payments from the 1998 Master Settlement Agreement between 46 states and the tobacco industry.

About the University of Oklahoma

Founded in 1890, the University of Oklahoma is a public research university located in Norman, Oklahoma. As the state’s flagship university, OU serves the educational, cultural, economic and health care needs of the state, region and nation. OU was named the state’s highest-ranking university in U.S. News & World Report’s most recent Best Colleges list. For more information about the university, visit ou.edu.