A multicenter telephone-interview study has found that cancer patients often perceive that communication problems with healthcare providers have contributed to a breakdown in their care, but very few formally report their concerns. The study, a project of the NCI’s Cancer Research Network’s Cancer Communication Research Center (CRN CCRC) was reported online first April 16 in the Journal of Clinical Oncology.
Lead study author, Kathleen M. Mazor, EdD, is codirector of the CRN CCRC, associate professor of medicine at the University of Massachusetts School of Medicine, and assistant director of the Meyers Primary Care Institute, in Worchester, Mass. Dr. Mazor’s coinvestigators are from the Meyers Primary Care Institute, the University of Washington School of Medicine, Group Health Research Institute (the research arm of Seattle-based Group Health Cooperative), and Kaiser Permanente Georgia’s Center for Health Research.
The investigators conducted in-depth telephone interviews with cancer patients from three clinical sites. Patients eligible for the study were those who felt that something “went wrong” during their cancer care; that the event might have caused, or did cause, significant harm; and that the event could have been prevented. The interviews focused on patients’ perceptions of the event, of its impact, and of clinicians’ responses to the event.
Of 416 patients queried by Dr. Mazor and coinvestigators, 93 believed something had happened in their care that was preventable and which could have caused or did cause harm. The perceived harms reported included physical and emotional harm, life disruptions, a negative effect on family members, a damaged physician–patient relationship, and financial expense.
Of the 93 patients, 78 completed interviews. Among those interviewed, 28% described a problem with medical care (eg, a delay in diagnosis or treatment); 47% described a communication problem (eg, with the information exchanged or the manner in which it was conveyed); and 24% described problems with medical care as well as communication.
The investigators reported that “few clinicians initiated discussion of the problematic events” and that “most patients did not formally report their concerns,” with just 13% formally reporting a problem. About 90% of the patients indicated that their experiences prompted them to be more proactive in their health care, by asking their healthcare providers more questions or researching symptoms and treatments on their own. About 10% of patients reported that they became more hesitant to seek care because of their experiences.
“We found that patients were sometimes willing to share their concerns or questions with their nurses, when they weren't able to do so with their doctors,” said Dr. Mazor. “We suspect that if nurses explicitly let patients know that they wanted to know about patients' questions and concerns, they could play an even more active role in reducing the sorts of breakdowns we identified.”