In order to bring new treatments to people with severe migraine we have to be able to measure the disability and impact of migraine. I am a physician who cares for and about people with severe headaches, but I have encountered a problem communicating with other doctors, scientists, and with my patients about how their headaches impact their lives. In order to determine this, I ask questions such as, “What effect does migraine have on your life?” or, “How do your headaches make your life different than it otherwise would be?”. The answers I get, often accompanied by tears, vary from the people who insist on focusing on the smallest effect–what one headache feels like–to those who give me a real feel for the big picture.
The most widely accepted tool we have is the MIDAS scale. It consists of 5 questions dealing with work, chores, and social activities, and asks how often one misses, or is 50% impaired in, those activities. Mild disability is indicated by a score of 6-10, moderate 11-20, and severe disability greater than 20.
The problem is that although it is a fine scale for the majority of migraine patients, it does a lousy job for most of my patients. Let us say someone just lost his or her job due to daily migraine: that person might answer the questions in a way that yields a huge number, for example 200. After a year of unemployment, that same person might answer that he or she didn’t miss work, and accomplishing a day’s chores is a lot easier if you are not trying to work, so that number goes down. The new score, with no change in how bad or disabling the migraines are, might be 40.
Another scale that we use is the HIT-6. I don’t have the space to really address this, but although it tries to be more comprehensive about the person with migraine, it too is lousy for the highly disabled person with migraine.
As I could not find a really good scale to measure disability, I made up my own questionnaire. I asked my patients to complete the following few questions, and took the worst answer if people checked more than one.
As a result of my migraine… (circle all that apply)
- I cannot or could not work at all.
- I can or could only work part time.
- I have had to choose a type of work with more scheduling flexibility.
- I work full time but perform less than my best
- I have no work related difficulties
As a result of my migraine, in the last 30 days… (circle all that apply
- I spent more than one-half of all waking hours in bed.
- I spent more than one-half of all waking hours resting and unable to do my normal activities.
- I spent more than one-quarter of all waking hours in bed.
- I spent more than one-quarter of waking hours resting and unable to my normal activities.
- I have spent a few days in bed.
- I have spent a few days resting.
- I have spent very little time in bed or resting.
The following graphs show how bad the patients are who come into my office, in the people with chronic migraine (more than ½ of days, usually almost all), and the people with episodic migraine (less than ½):
Almost half the people in my office with chronic migraine and more than 20% of my episodic migraine patients cannot or could not work at all!
More than 15% of my chronic migraine patients spend more than half their waking hours in bed due to migraine!
Let us say that one person barely gets out of bed for 3 months, while another cannot work, but can do routine shopping and do a little around the house. If I can work with the first patient and get that person to the point where he or she is like the second patient, this is a great deal of improvement! It is the necessary first step to getting a lot better.
What about just measuring pain levels? Doesn’t this correspond to the overall big picture?
Bad idea. Although it may be the best we have. I have many patients who have what seems to be a threshold. One person will lie in bed with a 6 to 7 of 10 headache because any activity makes it much worse. Another will do a great deal of stuff, limit their most vigorous activities, and eventually hit that 7/10 level and rest. Both will accurately calendar 6s and 7s. If the first person did what the second is doing, that person would have 9s and 10s.
Now here is the real problem: if we can’t measure disease severity in people with bad migraine, we can’t study it! Almost nothing has been done to better measure migraine severity, while millions of dollars and hundreds of papers have been allocated to studying the impact and severity of other, more socially acceptable chronic neurological illness, such as Parkinson’s disease, which has maybe a half of the disability across the population as migraine.
We won’t get cures until there is research. This is what the AHDA is all about.
Bill Young
