Blogger's Opinion: although this article focuses on breast cancer, there is of course a common theme, attention is deserved for those with less common/rare cancers as the dichotomies in care (access, research, outcomes.....) should be obvious
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Problems in cancer care are not uncommon
Public release date: 17-Apr-2012
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.
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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
UW Medicine
The UW Medicine health system includes Harborview Medical Center,
Northwest Hospital & Medical Center, Valley Medical Center, UW
Medical Center, UW Neighborhood Clinics, UW Physicians, UW School of
Medicine, and Airlift Northwest. UW Medicine also shares in the
ownership and governance of Children's University Medical Group and
Seattle Cancer Care Alliance, a partnership among UW Medicine, Fred
Hutchinson Cancer Research Center, and Seattle Children's. UW Medicine
has major academic and service affiliations with Seattle Children's,
Fred Hutchinson Cancer Research Center, the Veteran's Affairs Puget
Sound Health Care System in Seattle, and the VA Hospital in Boise,
Idaho. The UW School of Medicine is the top public institution for
biomedical research in funding received from the National Institutes of
Health. For more information about UW Medicine, visit
http://uwmedicine.washington.edu.
