Doctors downplay patients’ reports of medication side effects

Physicians, researchers, drug makers and regulators should pay more attention to patients’ first-hand reports of their symptoms while they take medicines because their information could uncover safety problems and guide treatment and research, a cancer researcher says.

In an article in the New England Journal of Medicine, Dr. Ethan Basch, an oncologist who treats men with prostate cancer at Memorial Sloan-Kettering Cancer Center in New York, writes that direct reports from patients are rarely used during drug approval or in clinical trials, and, when patients’ comments are sought at all, they are usually filtered through doctors and nurses, who write their own impressions of what the patients are feeling.

In addition, physicians and nurses “systematically downgrade the severity of patients’ symptoms” and sometimes miss side effects altogether. One result is “preventable adverse events” – for instance, suicidal thoughts in young people taking antidepressants, or severe constipation in people taking a drug for irritable bowel syndrome, both of which might have been detected earlier if symptoms had been systematically tracked.

Basch first studied people who receive chemotherapy, comparing symptom reports by patients with those from doctors and nurses and found that for every problem – fatigue, nausea, appetite loss, vomiting, diarrhea, constipation – patients reported it earlier and more often than did doctors and nurses.

The tendency to downplay symptoms may be based on the doctor’s knowledge that a patient is in the early stages of an illness and could be much worse. Or the doctor may be making mental comparisons with other patients who are sicker.

Sometimes, the downgrading may reflect wishful thinking by doctors, who may think that a certain drug will help patients and don’t want to take them off it.

Mistakes and distortions in reporting symptoms can be compounded in studies, where one researcher collects the information, another retrieves it from the chart and enters it into the study record, and still others evaluate it. The results can be like playing broken telephone.

He recommends that patient symptoms should be rated separately by patients and their physicians, particularly before and after new medications are approved and brought to market.

Source: The New York Times

You can read the original article in the New England Journal of Medicine here.

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