How bad are your headaches? When a migraine strikes, it may seem like the worst pain in the world and you would do anything to stop it. Once the attack is over, you may push the problem out of your mind, hoping you’ve had your last horrible migraine and your life will never again be turned upside down by pain.
Ironically, while coworkers or family members sometimes suspect them of exaggerating their pain, migraine sufferers may tend to deny or underestimate the severity of their illness during their headache-free periods. That denial can create a powerful barrier to finding effective treatment. Studies have shown that only about one-third of U.S. migraine sufferers are receiving medical care at any given point in time. When over-the-counter medications relieve pain and disability they are an excellent option, but many people who rely on self-treatment would benefit from medical care.
The Impact Questionnaire
The disability resulting from headache (for example, work absenteeism or reduced functioning at work, school or home) is the greatest dollars-and-cents cost associated with this illness. Since level of pain is subjective and hard to measure, a tool for assessing headache-related disability could be quite useful for evaluating the need for treatment and the success of treatment.
With Dr. Walter Stewart at Johns Hopkins I have developed a questionnaire for capturing information about pain and headache-related disability, to help doctors and patients evaluate the impact of headache on the individual’s daily life. We have tested the Headache Impact Questionnaire with 172 migraine sufferers who were identified and enrolled in the study after more than 5000 phone interviews (identifying 800 migraine sufferers) with randomly selected households. By comparing each volunteer’s answers with their entries in a headache diary, we demonstrated the questionnaire’s accuracy in capturing headache information. By testing and re-testing another group of 117 volunteers we showed that the questionnaire yielded consistent results: Respondents gave similar answers upon re-testing 4-8 weeks later.
The Headache Impact Questionnaire that has been tested and validated requires some mathematics to analyze the results. A simpler self-test version is now in development. In the meantime, you may get some insight into your own headache-related disability simply by recording the answers to the items on the Headache Impact Questionnaire (see below). These answers may help you explain to your doctor how headaches are affecting your life.
Communicating with Your Doctor
Studies have shown that doctors and patients may not communicate about headache-related disability. When headache sufferers complain of terrible pain, doctors tend to respond with reassurance, "Don’t worry, it’s only a migraine." Patients often don’t say how the headache attacks are affecting their lives, and doctors are trained to focus on symptoms and diagnosis rather than the impact of the illness. However, if the patient spells out the impact of the pain—"I’m missing 2 days of work every month and I might get fired" or "I couldn’t take care of my baby while I was sick"—doctors usually respond taking the problem more seriously.
We hope that use of the Headache Impact Questionnaire will help to improve doctor-patient communication. First of all, it draws the patient’s and the doctor’s attention to the impact of migraine. Headache-related disability is expressed as so many hours or days of lost productivity and functioning, so it’s relatively simple to measure the impact of headache at the time of the first doctor’s visit, and later to track the effectiveness of the prescribed therapy. For people experiencing significant disability and reduced functioning because of headache, using the Headache Impact Questionnaire may help assess the need for more aggressive or expensive treatment.
We also hope that the Headache Impact Questionnaire will prove useful to researchers involved in population-based studies of headache severity or in evaluating the effectiveness of various treatment options. In fact, the questionnaire is now being tested in clinical trials of new headache medications.
