NEWS | September 9, 2016

Voices of patients and oncologists must be heard, study shows

Communications coaching can help, but challenges persist

(SACRAMENTO, Calif.)

Training oncologists and their patients to have high-quality discussions improves communication, but troubling gaps still exist between the two groups, according to a new study in JAMA Oncology.

Richard Kravitz Richard Kravitz

“A combination of patient and physician communication training improved the exchange of information during cancer visits, however these improvements did not result in expected gains in quality of life or hoped-for reductions in aggressive care at the end of life,” said senior author Richard Kravitz, professor of internal medicine at UC Davis Health System. “Clearly, communication is not the whole story. Preserving hope while conveying realistic information is an ongoing challenge in cancer care.” 

The research, which follows a study showing a significant divide between what physicians say and what patients hear when it comes to cancer prognosis, involved patients diagnosed with advanced cancer (stage 3 or 4) and their oncologists. Researchers coached the patients about what to ask their doctors and how to voice their concerns, and the doctors were given state-of-the-art communication training.

The study — called VOICE, for Values and Options in Cancer Care — included 265 patients and 38 physicians from the UC Davis Comprehensive Cancer Center in Sacramento, Calif., and the Wilmot Cancer Institute at the University of Rochester in New York. Participants in the study were enrolled between 2012 and 2014 and were randomized, meaning that approximately half of the physicians and patients received no special training and served as a control group.

Results showed that those who received training were much more likely to ask questions, ask for clarification and express their views. This is important because 90 percent of patients say they want to be actively involved in their care, and most busy physicians realize they need help in this area and want the support, said lead author Ronald Epstein, professor of family medicine, psychiatry and oncology, and director of the Center for Communication and Disparities Research at the University of Rochester.

Doctors and patients also had more clinically meaningful discussions around topics such as emotions and treatment choices, results showed. In fact, the trained group was nearly three times more likely than the untrained group to talk about difficult topics such as prognosis.

“We have shown in the first large study of its kind that it is possible to change the conversation in advanced cancer,” Epstein said. “This is a huge first step.”

And yet despite the focused efforts, shared understanding about prognosis was lacking. For example, a few of the patients believed it was “100 percent likely” they would be cured, while one-third said it was “likely” they would be cured, despite their diagnoses of incurable cancer, and a majority thought they would be alive in two years. Median survival was just 16 months. The training also had no impact on health care utilization.

The researchers will continue to track the experiences of families and caregivers of deceased patients who took part in the study to learn whether the communications training had any impact on the families’ grief experience and adjustment following the death of their loved ones, said co-author Paul Duberstein, professor of psychiatry at the University of Rochester.

The communication coaching for oncologists included one-to-one mock office sessions with actors (known as standardized patients), video training and individualized feedback. Patients were given a booklet that Epstein’s team wrote called “My Cancer Care: What Now? What Next? What I Prefer.” Patients also met with social workers or nurses to discuss commonly asked questions and how to express their fears, for example, or how to be assertive and state their preferences.

Later, the researchers audio-recorded real sessions between the oncologists and patients, and asked both groups to fill out questionnaires. They coded the interactions and matched the scores to the goals of the training.

A potential limitation of the study was that the training, provided only once, may not have coincided with key decision points during patients’ care processes. The effects of the training may have waned over the months, especially as the cancer progressed.

“We need to embed communication interventions into the fabric of everyday clinical care,” Epstein said. “This does not take a lot of time, but in our audio-recordings there was precious little dialogue that reaffirmed the human experience and the needs of patients. The next step is to make good communication the rule, not the exception, so that cancer patients’ voices can be heard.”

The release of the study by the journal coincided with its presentation today at the American Society of Clinical Oncology (ASCO) Palliative Care in Oncology Symposium 2016 in San Francisco. 

The National Institutes of Health and the National Cancer Institute funded the study through grants to Epstein, Kravitz and Duberstein.

Additional authors were Camille Cipri, Joshua Fenton, Peter Franks, Paul Kaesberg, Linda Lewis, Mark Robinson, Daniel Tancredi and Guibo Xing of UC Davis; Kevin Fiscella, Beth Hoh, Supriya Mohile, Sandy Plumb, Peter Sullivan and Alison Venuti of the University of Rochester; Robert Gramling of the University of Vermont; Michael Hoerger of the University of Tulane; Richard Street of Texas A&M University; Cleveland Shields of Purdue University; Anthony Back of the University of Washington; and Phyllis Butow, Martin Tattersall and Adam Walczak of the University of Sydney.