Study: 1 in 5 cancer patients may experience ‘breakdowns’ in their care

Difficulties occur more often in communication than in medical care

Cancer care is increasingly complex, and as many as one in five cancer patients may experience "breakdowns" in their care, according to a new study in the Journal of Clinical Oncology. Such breakdowns include communication problems between patients and their care providers, as well as more traditional medical errors; both types of problems can create significant harms. In the study, communication problems outnumbered problems with medical care.

Kathleen Mazor, EdD, Assistant Director of the Meyers Primary Care Institute, in Worcester, MA, led the study, with researchers from the University of Washington, Group Health, and Kaiser Permanente. Their study was a project of the Cancer Research Network's Cancer Communication Research Center. They found that problematic events led to varied consequences, such as additional medical care, delayed recovery, emotional distress, and persistent damage to the relationship between patients and their doctors.

"For me, the take-home message is it's critical for us to listen to patients as we try to improve care," Dr. Mazor said. "The patients we spoke with were generous, articulate, and thoughtful in recounting their experiences, and were glad to share their stories because they wanted to make a difference. We also heard a lot of stories about physicians, nurses, and others who really helped make things better-in the aftermath of a problem or even in the absence of a problem."

Examining actions patients took following a breakdown, the research team found that only 13 percent formally reported the problem, choosing instead to focus on their health and their future. Nearly all patients indicated that the problem spurred them to take positive steps in their health care behaviors, such as asking more questions or researching symptoms and treatments. However, 10 percent of patients reported they became more hesitant to seek care.

The study used telephone interviews rather than medical-chart documentation to understand how patients perceived their care experiences.

"It's vital that we hear directly from the patients," noted study co-author Sarah M. Greene, MPH. "The communication problems probably wouldn't have appeared in their medical record. But to the patient, they are as significant as a clinical adverse event, like a wrong dose of chemotherapy." Ms. Greene is a research associate at Group Health Research Institute in Seattle.

Both patients and clinicians need new ways to provide negative and positive feedback about cancer care, according to the authors, and these systems should include some patient and clinician education. Additionally, the study team noted that patients' perceptions of problems may differ from clinicians' perspectives, so educating clinicians is equally critical. The health systems in this study are currently exploring strategies to encourage both patients and clinicians to openly communicate about their care experiences and expectations.

This study "reminds us that substantial work is needed to optimize breast cancer care and, most importantly, communication," Jeffrey Peppercorn, MD, MPH, of Duke University Medical Center, wrote in an accompanying editorial.