Table 3

Patient perspective on suggested outcome measures

QuestionsThemesQuotations
What is your first impression of the measuring tools?MIDAS“…MIDAS is very common”
“3 months is a difficult period of time to remember, symptoms can vary from month to month”
HDI / HIT-6“….I quite liked this one”
“…as well as the HIT-6”
NPRS“some measures are just numbers, NRS does not measure anything, really”
McGill“this only looks at pain quality but not at frequency, this is strange”
Headache frequency / diary“when a new study is published I always look at the reduction of days per month, so it does seem important to count days”
SF36“I liked the SF-36 best, because it includes quantity but also measures the burden of migraine…and how I am”
What do you like / dislike about these tools?Aura“sometimes my aura is worse than the headache, but this is never asked in any of the questionnaires”
Pain“and sometimes we are asked about the duration of the attack, which is stupid, because I am taking my medication and the headache is gone. I cannot say how it would have continued without the medication”
“I am usually asked whether my headache is on the right or left or both sides, but I cannot often locate it precisely. It changes and is sometimes in my forehead and sometimes in the back and the whole head hurts. Am I the only one who finds this difficult?”
Fear“I am always scared of the next attack - This fear is sometimes stronger than on other days. I sometimes feel as if the fear is worse than the actual attack, because it influences more or less every day of my life.”
Is a 50% reduction of headache days realistic?“(…) I currently have more frequent migraine attacks but the pain is not as intense as it was. My aura, however, is more intense than ever, it sometimes occurs on 15 days in 1 month. I have also had months with only 3 days of aura and more headache. I find it very difficult to estimate whether an intervention was effective because of this variability in symptoms. The effect probably needs to be followed up over 2 years to identify whether the reduction was one of the usual variations.”
“If any medication would give me 20% reduction of symptoms I would be very very happy! Any reduction is good!”
  • HDI, Henry Ford Disability Index; HIT-6, Headache Impact Test; MIDAS, Migraine Disability Assessment Scale; NRS, Numerical rating Scale.