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A study by a team of Memorial Sloan-Kettering Cancer Center clinicians has suggested that asking patients to report side effects during cancer treatment could add valuable information to the monitoring and early detection of potentially serious problems, especially during clinical trials. The study was published in November in The Lancet Oncology. [PubMed Abstract]

The team surveyed 400 patients receiving chemotherapy at Memorial Sloan-Kettering, half with lung cancers and half with genitourinary cancers, and compared the patients' reporting of the severity of their side effects with the severity reported by their nurses and doctors. The patients and their healthcare providers were asked to rate the severity of common side effects from chemotherapy, such as vomiting, fatigue, pain, and diarrhea, as well as side effects specific to the cancer type.

The researchers, led by first author Ethan M. Basch, found that in most cases there were no differences between what the patients experienced and what the clinicians observed. The exception was in symptoms that were not directly observable, such as fatigue and difficulty breathing, which patients sometimes reported as slightly more severe. However, those differences were not great enough that they would result in reducing the chemotherapy dose or otherwise changing treatment.

"Based on our findings, we believe that self-reporting of symptoms could add valuable data to clinical trials and improve treatment by notifying clinicians earlier when patients' symptoms are severe," said Dr. Basch. "If patient-reported side effects become an accepted source of data about new treatments, the routine collection of such information could make trials more efficient, ultimately providing toxicity information to patients based on the assessments of their peers. We are currently evaluating this further in a randomized trial here at Memorial Sloan-Kettering and in a national cooperative study group."

"The prevailing paradigm in clinical research has been for physicians to interpret patients' symptoms," said senior author Deborah Schrag. "Based on this work, we are making efforts to engage patients more directly in symptom monitoring, which will allow us to improve the patient experience and the delivery of care."


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