by Teri Robert, MyMigraineConnection Lead Expert
The nausea, vomiting, heightened sensitivity to light and sound, throbbing headache and other symptoms of a Migraine attack is not be the only disruption sufferers endure. There is also be an impact of Migraine that patients experience when they are not having an attack, often termed interictal burden. Migraineurs realize this, but until now, there was no pertinent clinical data.
According to data presented at the National Headache Foundation’s Fourth Annual Headache Research Summit, the newly developed Migraine Interictal Burden Scale (MIBS) is the first tool designed to measure the interictal burden associated with Migraine.
When used in clinical practice, the MIBS can help healthcare professionals better understand how Migraine disrupts their patients’ daily activities when they are not experiencing an attack, and therefore better assess the total impact of Migraine in order to make more informed treatment decisions.
Previously, only instruments designed to measure the ictal burden of Migraine (or the pain and suffering patients experience during an attack) were available to healthcare professionals. In this study,* researchers uncovered items that measure the impact of Migraine between attacks. They developed the 16-item MIBS which measures the burden in four key areas:
- disruption at work and school,
- interference in family and social life,
- difficulty planning activities,
- emotional consequences
The researchers hypothesized that as patients may be frequently thinking about when the next Migraine attack might strike, they may limit activities not just during at attack but also between attacks.
“In addition to the pain and disability patients experience during a Migraine attack, Migraine may also affect patients’ lives and the lives of their families in other ways… Patients reported feeling frustrated, guilty about missing family or work activities, and helpless because their headaches controlled their lives. We are currently tailoring the MIBS for use in clinicians’ offices, to help them improve communication with patients about the impact of Migraine and to assist them in creating comprehensive treatment plans.”
Dawn Buse, Ph.D., lead study investigator and Director of Psychology at the headache center at Montefiore Medical Center in New York City
To develop MIBS, researchers identified 30 items based on clinical experience and focus groups with Migraine sufferers. Questionnaires designed to learn more about the impact of Migraine between attacks were mailed to approximately 2,500 Migraine patients in the general population. Statistical analysis helped the researchers to identify 16 questions that best measure the interictal burden of Migraine. A shorter version of the instrument for use in a primary care setting to help guide treatment decisions is currently under development.
“While some medications can help relieve the pain felt during a Migraine attack, there are other treatment options… Preventive medications may reduce the burden of Migraine during and between attacks.”
Richard B. Lipton, M.D., study author and director of the headache center at Montefiore Medical Center in New York City
Approximately 35 million Americans suffer from Migraines, but fewer than half are properly diagnosed. Recently, the American Migraine Prevalence and Prevention (AMPP) Study showed that almost 98 percent of people with frequent Migraines take medications, but a large majority reported their lives are still negatively impacted by the pain and disability associated with Migraine. In addition, approximately 40 percent of frequent Migraine sufferers could benefit from preventive therapy, yet only 13 percent use Migraine preventive medication.
Thanks to this study, there is now clinical data to back up what Migraineurs already knew - Migraine impacts our lives and the lives of the people close to us not just during attacks, but between attacks as well.
The MIBS will provide both healthcare professionals and Migraineurs with information that has the potential to change not only our treatment, but other aspects of our lives as well:
· Medical professionals who have a clearer picture of the total impact of Migraine can provide better care for Migraineurs.
· Migraineurs who have felt frustration, guilt, and doubt caused by this interictal burden may feel more validated and better able to cope with such feelings.
· As a more accurate picture of the full impact of Migraine disease can be made available to employers and other people who have difficulty understand it, hopefully, some of the stigma and difficult situations Migraineurs face will ease.
- This study was sponsored by Ortho-McNeil Neurologics, Inc.
Press Release. “New Instrument Developed to Measure Impact of Migraine on Patients’ Lives When They Are Not Experiencing an Attack.” National Headache Foundation. Chicago. February 14, 2007.
Interview. Richard B. Lipton, M.D., study author and director of the headache center at Montefiore Medical Center in New York City. February 16, 2007.
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.