Thursday, October 5, 2017

What we choose to name a disease matters

A couple of years ago around this time, I was dealing with a series of minor health problems. I developed a sinus infection that took several weeks to resolve. I twisted one of my knees ice skating, and for a while I feared that I had torn a meniscus. Occasionally after eating a heavy meal, I had the sensation that food was getting stuck on the way to my stomach - so along with an x-ray and MRI for my knee, my doctor also sent me for an upper GI series. Finally, my blood tests for a new life insurance policy came back with a slightly high hemoglobin A1c level. The A1c test was once used only to monitor glucose control in patients with established diabetes, but in 2010 the American Diabetes Association changed their diagnostic criteria to classify an A1c level of 6.5% or greater as consistent with diabetes, 5.7% to 6.4% as prediabetes, and 5.6% or lower as normal. So on top of knee tendinitis and gastroesophageal reflux disease (GERD), I also found out that I had prediabetes.

Intellectually, I knew that there was no evidence that screening for prediabetes is beneficial (the life insurance company, not my doctor, had ordered the test), and that a screen-and-treat approach to diabetes prevention leads to lots of overdiagnosis. Emotionally, it was a different story. I had recently turned 40 and was feeling old. It had been years since I had gotten the recommended amount of physical activity for adults, and now I was doing even less because my knee hurt. It didn't help that the afternoon I found out about my A1c level, my wife called and asked me to pick up some Burger King sandwiches and fries to bring home for dinner. Not exactly what a pre-diabetic adult with GERD should be eating.

Would I have felt less sick if I had instead been told that I had "slightly high blood sugar"? In recent years, oncologists have recommended re-naming slow-growing lesions that we currently call cancer, such as "ductal carcinoma in situ" of the breast, indolent lesions of epithelial origin (IDLE), hoping that a less scary term will discourage patients from pursuing unnecessarily aggressive (and potentially harmful) treatment. Similarly, some doctors believe that telling patients that they have a "chest cold" rather than "acute bronchitis" will make them less likely to ask for antibiotics.

systematic review published this year in BMJ Open supported the notion that what clinicians choose to name a disease influences patients' management preferences. Some study examples: women who were told they had "polycystic ovary syndrome" were more likely to want a pelvic ultrasound than those who were told they had a "hormone imbalance." Women were more likely to want surgery if they had "pre-invasive breast cancer cells" versus "abnormal cells" or a "breast lesion." Patients were more likely to expect surgery or casting of a "broken bone" or "greenstick fracture" than a "hairline fracture" or "crack in the bone." In each of these cases, the use of a more medicalized or precise term led patients to prefer invasive management options that were no better than more conservative choices.

How will I apply this knowledge to my daily practice? Although I already use the term "prediabetes" sparingly (preferring "increased risk for diabetes"), I'm going to start telling more patients with A1c levels similar to mine that they have high blood sugar instead. That they have heartburn rather than GERD. That they have overuse knee strains instead of tendinitis. And certain medical terms, such as "advanced maternal age" (i.e., pregnancy after the age of 35, or my wife's age when she gave birth to 3 of our 4 children), I will strive to eliminate from my vocabulary entirely.

2 comments:

  1. Caution with the "hormonal imbalance" that term was and still is unfortunately used by some Drs. with teen females - usually a waste basket term when they cannot diagnose what really ails a young woman. :-) Too often women(especially young women) go undiagnosed with treatable conditions. I suspect you had a layer of sarcasm but had to add my 2 cents as a woman and a Mother to daughters. One with multiple rare disorders and the other with PCOS- she would be quite insulted if you told her she had a hormone imbalance, she would feel you were implying she was mentally impaired. Different slang for different generations.

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  2. "Elderly gravida" the term used in ICD system is even worse than certain medical terms, such as "advanced maternal age" (i.e., pregnancy after the age of 35, or my wife's age when she gave birth to 3 of our 4 children), " so I hope other doctors will follow your lead and "strive to eliminate from my vocabulary entirely."

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