Do Patients know best?

If doctors listen more attentively to a patient,they could diagnose and treat better

If doctors listen more attentively to a patient,they could diagnose and treat better
About six years ago,my doctor gave me some samples of a drug to treat pain from an injury. I took it for a few days and then woke up one morning with a big red blister on my tongue. I wondered if the pills might be to blame. They weren8217;t helping much anyway,so I quit taking them. The blister went away. I mentioned it to the doctor,but he said it must have been a coincidence.

Not long after,the drug,Bextra,was taken off the market in the United States. It had been linked to heart attacks and also to a dangerous condition called Stevens-Johnson syndrome which can cause mouth blisters,among other things. There8217;s no way to know if Bextra caused my problem,but it seemed like a reasonable idea,and I never understood why my doctor was so quick to dismiss it.

The episode came to mind when I read an article in the New England Journal of Medicine by Dr Ethan Basch,an oncologist who treats men with prostate cancer and does research at Memorial Sloan-Kettering Cancer Center in New York. He argues that doctors,researchers,drug makers and regulators should pay more attention to patients8217; firsthand reports of their symptoms while they take medicines,because their information could help to guide treatment and research,and uncover safety problems.

Direct reports from patients are rarely used during drug approval or in clinical trials,Dr Basch says. If patients8217; 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,he writes,doctors and nurses systematically downgrade the severity of patients8217; 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.

There is a sensibility among some old-school clinicians that they have a better sense of their patients8217; experience than patients do themselves, Dr Basch said. Three clinicians asked to rate the same patient8217;s nausea will often give three different scores,he adds.
The tendency to downgrade symptoms may be based on the doctor8217;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: You think your nausea is bad,you should have seen the patient I saw this morning,let me tell you, as Dr Basch put it.

Sometimes,he said,the downgrading may reflect wishful thinking by doctors,who may think that a certain drug will help patients and don8217;t want to take them off it. Another reason,Dr Basch said,is that we live in a litigious society. Describing a problem in a chart creates a record that the doctor may have to act on. There may be a defensive lack of documentation, he said.
Sometimes the information is lost altogether,when doctors and patients,distracted by test results and treatment plans,forget to discuss symptoms. This is where a checklist could help, he said.

Patients may also tell doctors one thing and then write another in their own reports,Dr. Basch said; most say their written accounts are closer to reality.
The idea of not telling doctors the whole truth struck a guilty chord with me. Growing up,I got weekly hay fever shots that I don8217;t think helped me at all. But I kept hoping they would,and the doctor was very kind,so whenever he asked if I was feeling better,I said yes,even though I actually spent most of August and September sneezing my brains out. This charade went on for years. Would I have been more honest in a diary? Maybe.

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A better approach,he says,would be to have large numbers of patients filling out questionnaires before and after drugs are marketed. In an e-mail message,he said,For example,in the postmarket setting we could ask 5,000 selected patients starting Bextra to report monthly you would have reported the mouth sore without knowing if relevant or not,and this would then be pieced together with other reports.

If patients had been asked to report their symptoms while the drug was still being tested,he added,problems might have been detected before it was even approved.
Although the regular reporting may sound like a nuisance for patients,researchers find that many people are eager to have their say. In one study,Dr. Basch said,subjects typed volumes into a small online text box,even though they couldn8217;t see what they were typing after the first few sentences.

We8217;d get two pages of stream of consciousness, Dr Basch said. The clinicians became overwhelmed. The challenge is to create surveys that focus on what8217;s relevantand yet still provide a way to describe symptoms the researchers hadn8217;t anticipated. Dr Basch is working on it,for the National Cancer Institute.
Patients have a lot to say, Dr Basch said. We8217;re just waiting for someone to listen.
_ Denise Grady,NYT