African-American men have the highest risk of being diagnosed with prostate cancer as well as dying from it compared to any other ethnic group in the U.S. This trend has remained unchanged for over four decades.

Although research has focused on identifying the biological differences that may lead to this difference, there’s growing evidence that distinct racial and ethnic disparities in prostate cancer treatment, and the quality of medical care in African-American men, contribute to this disparity.

African-American men are less likely to receive more aggressive treatments than their counterparts. And, if and when they do receive those treatments, they receive them later than their counterparts. For example, access to early effective survivorship treatments such as androgen deprivation therapies remains a challenge in African-American patients.

Our multidisciplinary research program in cancer population science at the University of Virginia has been examining reasons for poor prostate cancer outcomes, especially in African-American patients. Recent, as yet unpublished research from our group highlights several issues related to medication challenges in elderly prostate cancer survivors. We found there is a clear link between improved use of these treatments and reduced mortality. In addition, both access and use of these life-saving treatments remains low among African-American survivors.

A history of gaps

African-American prostate cancer patients face unique challenges in the treatment decision-making process. These include lower rates of understanding of treatment options, less time and interaction with medical care professionals and, often, poorer quality of medical care. Those challenges particularly affect both their access and compliance to medications, and, in turn, outcomes in these patients.

For example, a 69-year-old African American man whom we interviewed for our research, Mr. Tyler (name changed), along with his wife, Mrs. Tyler, sat in an exam room while his doctor told him he had stage 4 prostate cancer. Stage 4 cancer is cancer that has spread from its original site to distant organs and, in prostate cancer, even the bone.

Mr. Tyler was shocked. He had not noticed any health issues besides getting up in the middle of the night to urinate and some hip pain. He thought that was normal as men age. When he went to the clinic, he thought he had arthritis in his hip and would be prescribed pain medications for that. He could not imagine hearing that he had cancer.

He had not been to see a health care provider in about 12 years. He was always so busy at work and did not really feel comfortable going to a health care provider, having heard stories from family members and friends that other African-Americans are not treated well at the hospital.

The doctor gave Mr. Tyler a few options such as surgery, radiation and androgen deprivation therapy, considering his age, ethnicity, comorbidities and other related factors. But Mr. Tyler and his wife did not know what treatment options to seriously consider.

The health care provider gave a recommendation, but his wife was unsure. They were confused and anxious about making such a big and complex decision. The couple relied on information they received from speaking to friends, church members and relatives and ultimately made a decision, but it was not easy. And, it was not free from some regrets. Ultimately they chose to receive the radiation treatment and start the androgen deprivation treatment, which Mr. Tyler stopped because of discomfort. Mr. Tyler unfortunately died shortly after he discontinued treatment.

Treatment decision process improvements may be paramount

This scenario of confusion and anxiety is not so uncommon. Cancer is a terrifying diagnosis, and making decisions about treatment can be overwhelming.

Studies have suggested that patients with cancer feel more comfortable expressing their concerns with their health care provider when there is a trusting and supportive relationship developed along with adequate time for treatment discussion. This in turn leads to more comfortable treatment decisions, which often works to improve patient outcomes.

Prostate cancer treatment in particular often brings harsh side effects that severely affect a man’s quality of life. These side effects include erectile dysfunction, hot flashes, muscle loss, hair loss and urinary issues such as incontinence. These may be short term, but they can last for years.

The matter is complicated because many of these harsh side effects stem from androgen deprivation therapies, which can improve survival. Because of the complicated nature of assessing the risk of side effects with the potential benefit of survival, the use of androgen deprivation therapies should carefully be considered by the patient and his doctor.

Research has shown that these treatment-related decisions are very different in African-American prostate cancer patients compared to white patients and those residing in urban and rural communities. Therefore, there is a need to study treatment decision-making in both settings to formulate effective educational interventions.

Aids that can help

In one of our recent studies, we found that decision aids may help. Decision aids are electronic or paper tools involving a set of questions and information related to treatments. They are used to assist patients and caregivers in making informed decisions about the types of treatments and procedures, or both, that are more suitable for their particular case.

Decision aids are effective in a shared decision-making process, in which the doctor or nurse navigator sits down with a patient and walks through the process. There is active participation between the patient, caregiver and health care provider.

Decision aids can help patients apply specific health information while actively participating in health-related decision-making. Primarily, decision aids that have been applied to prostate cancer have been focused on knowledge or treatment options only, which patients often complete themselves. These types of decision aids are quite limited and do not allow patients the time and true engagement with health care providers to really understand their disease and the options that are available, and ultimately become satisfied with that decision.

Decision aids are most effective when they are tailored to the individual patient, rather than being generic. For example, researchers have developed an individualized decision support system BreastHealthDecisions.org, which represents a new approach to breast cancer prevention care.

In our study that developed an interactive decision aid for treatment decisions among advanced prostate cancer patients, we found that not only did the decision aid enhance patients’ and their caregivers’ understanding of the options that they had for treatment, but it also built more trust and engagement between the patient and the health care provider, which is valuable. The study also revealed that by using the decision aid, patients were more concerned with the quality of their life after treatment than extending the number of years of life.

Developing decision support systems for prostate cancer is paramount as we move towards an era of precision medicine treatments, such as proton therapies, which are used only after decision support system plans are in place for the prostate cancer survivor.

Often, the conversations between health care providers and the patient are focused around the quantity of life. The patients in our study said they felt empowered enough through the use of the decision aid to discuss quality of life, and how that was a critical aspect within their conversations.

There is much work to do to provide optimal health care to patients with cancer, including African-Americans with cancer. Tailored decision aids that focus on the priorities of the patient and their caregivers and that promote trusting relationships with health care providers is key to helping patients feel satisfied with their health care decisions and have less regret.

Rajesh Balkrishnan receives funding from Merck and Company.

Randy A. Jones receives funding from NIH.