Symptoms, Don’t Patients Know Best?

Have you ever reported symptoms to your medical provider and felt that they didn’t take you seriously? Years ago, while working with women with HIV, many were taking a new treatment. They complained of horrible gastric side effects, which they didn’t think their providers really understood. At one conference, I spoke to a drug rep about this, and he said he had been hearing something but….. I mentioned to one of the women on that particular drug and her reply was swift and to the point, “Shall I go over and fart next to him?”

There is an interesting article on this in the April 12 New York Times. Dr. Ethan Basch is 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 patients’ 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 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, he writes, doctors 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.

Dr. Basch, 42, said he first became interested in this subject around 2003, when he attended a presentation of the results from a study of a new cancer drug. The researchers had not found fatigue to be much of a problem, but other doctors in the audience said their patients had suffered terribly from it while on the drug, so much that some had to quit taking it. Somehow, the study had completely missed that finding.

Intrigued, Dr. Basch began to study people receiving chemotherapy, and to compare symptom reports by patients with those from doctors and nurses. The differences were striking. For every problem — fatigue, nausea, appetite loss, vomiting, diarrhea, constipation — patients reported it earlier and more often than did doctors and nurses.
Why does this happen so often?

There’s no simple answer.

I’d be the first to admit that if some one was a constant whiner, I was less likely to take them seriously, even if it was a new issue. It was definitely a situation of the “boy who cried wolf.”

Some things to help you get your point across include:

• When talking to your provider be calm and state clearly what the problem is. Leave the whining at home.

• Prepare for your office visit by putting in writing symptoms, questions and issues you might be concerned about.

• The nature of a chronic disease is that it’s something that’s going to around for a long time. Be realistic in your expectations.

• Let your provider know when things are working well, what’s been helpful etc.

• Dress how you feel. Many was the time the woman I was advocating for was feeling awful, yet for her office appointment, she’d dress up and put on make up. The provider didn’t always grasp how sick she was simply because, “she looks so good.”