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The Need to Educate & Listen to Patients

Fuerst, Mark L.

doi: 10.1097/01.COT.0000508325.53085.3c
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patient communication

patient communication

SAN FRANCISCO—Nearly two-thirds of cancer patients on palliative treatment have the mistaken belief that their chemotherapy will lead to a cure, according to a new study.

“Time spent explaining and educating cancer patients about their diagnosis does not correlate with their understanding,” lead author Tiffany Pompa, MD, Hematology Oncology Fellow, Hahnemann University Hospital/Drexel University in Philadelphia, told Oncology Times. “Less than 15 percent of the patients in our study felt they fully understood their prognosis and had an overall understanding of their disease.”

Pompa added that “each patient needs to be evaluated on multiple occasions for understanding of their prognosis along with individualized assessment to address needs and evaluate comprehension.”

The results of the study were presented at the ASCO 2016 Palliative Care in Oncology Symposium (Abstract 24).

An informed decision requires good communication between the patient and the oncologist in regards to diagnosis and prognosis, especially in patients with terminal cancer, said Pompa, adding that “this discussion entails education about their disease, treatment options, and potential outcomes.

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Study Methodology & Results

Pompa and colleagues conducted a study to assess advanced-stage cancer oncology patients' comprehension of their disease, treatment options, and goals of therapy. The patients included those with a diagnosis of metastatic cancer with an option for palliative or life-extending chemotherapy in an outpatient office at Drexel University College of Medicine in Philadelphia.

The patients completed a 34-item questionnaire about comprehension of their cancer, satisfaction, perception of their physician interaction regarding disease education, and potential barriers to patient understanding. Of the 52 patients analyzed to date, one patient was not aware he had cancer, and three patients (5.7%) thought there was no longer cancer in their bodies. Nearly two-thirds of the patients (62%) thought the goal of therapy was to cure their cancer, and half of them thought the goal of therapy was to extend how long they will live.

One in five patients thought the goal of therapy was to palliate symptoms, and one in 10 patients did not know why they were on therapy for their cancer. Only about 10 percent of patients indicated they had talked about hospice with their doctor. Another 10 percent of patients felt they shouldn't ask any questions. Virtually all of the patients (90.5%) felt they were participating in their treatment decisions.

Only four patients (7.5%) stated they didn't understand the medical terms used by the doctors. Compared to what patients wish they knew, almost 30 percent felt they knew half or very little about their diagnosis and one-third felt they knew half, very little, or nothing about their prognosis.

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Effective Communication

The researchers concluded that “due to discrepancies between patient understanding and the intended goals of care, our study highlights the need for further guidance in effectively communicating extent of disease and predicted outcome.”

“It is also important to periodically ask patients to discuss their understanding of their diagnosis, prognosis, and treatment options,” Pompa said. She noted that “a majority of the published research discusses improvement and more effective ways of communication for physicians with their oncology patients. By evaluating our patients and observing the variation in understanding even for patients with multiple visits, we really have to question whether a set way to communicate would be beneficial or would hinder the underlying understanding of these patients as individuals.

“There are discrepancies between patient understanding about their disease, prognosis, and the intended goals of care,” Pompa emphasized. “Our study reveals the need for further guidance in effectively communicating extent of disease and predicted outcome.”

Her message to practicing oncologists: “The journey for a cancer patient is dynamic, as should be our discussions with them. As oncologists, it is important to revisit on multiple office visits our patients' understanding throughout the course of care. Most important is the ability to sit back and listen. We want to educate our patients with knowledge, but we need to listen to determine the best way to individualize relaying information and better their understanding.”

Mark L. Fuerst is a contributing writer.

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