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.
The National Cancer Institute funded the study.
Dr. Mazor's and Ms. Greene's co-authors were Douglas Roblin, PhD, and Josephine Calvi, MPH, of Kaiser Permanente Georgia, in Atlanta; Kathryn Horner, MPH, of Group Health Research Institute; Celeste Lemay, RN, and Cassandra Firneno, BS, of Meyers Primary Care Institute, in Worcester, Massachusetts; and Thomas H. Gallagher, MD, an affiliate investigator at Group Health Research Institute who is based at the University of Washington School of Medicine's Department of Medicine.
Journal of Clinical Oncology
The Journal of Clinical Oncology serves its readers as the single most credible, authoritative resource for disseminating significant clinical oncology research. In print and in electronic format, JCO strives to publish the highest quality articles dedicated to clinical research. Original Reports remain the focus of JCO, but this scientific communication is enhanced by appropriately selected Editorials, Commentaries, Reviews, and other work that relate to the care of patients with cancer. For more information, see http://jco.ascopubs.org/
HMO Research Network
The HMO Research Network is a consortium of 19 health care delivery organizations with both defined patient populations and formal, recognized research capabilities. The Network's vision is to be the research partner of choice for those seeking to shape health and health care delivery. For more information, see http://www.hmoresearchnetwork.org
Meyers Primary Care Institute
The Meyers Primary Care Institute was established in 1996 as a joint venture of Fallon Clinic (now Reliant Medical Group), Fallon Community Health Plan, and the University of Massachusetts Medical School. The Institute's mission is to promote primary care practice through innovative research and educational initiatives. For more information, see http://www.umassmed.edu/meyers/index.aspx
Kaiser Permanente Georgia's Center for Health Research
Kaiser Permanente Georgia's Center for Health Research conducts professionally independent, public domain research and disseminates its findings in the scholarly literature and scientific community. For more information, see http://www.kpchr.org/research/public/default.aspx
Group Health Research Institute
Group Health Research Institute is the research arm of Seattle-based Group Health Cooperative, a consumer-governed, nonprofit health care system. Founded in 1947, Group Health Cooperative coordinates health care and coverage. Group Health Research Institute changed its name from Group Health Center for Health Studies in 2009. Since 1983, the Institute has conducted nonproprietary public-interest research on preventing, diagnosing, and treating major health problems. Government and private research grants provide its main funding. For more information, see http://www.grouphealthresearch.org
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