Researchers looking for the first time at how migraine sufferers experience the stigmatizing effects of their disease show that chronic migraine sufferers experience worse stigma than episodic migraine sufferers and more than those with other neurological diseases including stroke, epilepsy and MS.
The research, presented at the American Headache Society's 52nd Annual Scientific Meeting in Los Angeles this week, was conducted at the Jefferson Headache Clinic at Thomas Jefferson University Hospital in Philadelphia by Jung E. Park, MD and her team.
"Many diseases like HIV, mental illness, and cancer can be highly stigmatizing, resulting in depression, anxiety, decreased quality of life, and disruption of social relationships," said Dr. Park. "Our goal was to understand how stigma attaches to migraine."
The team surveyed 123 outpatients with chronic migraine (CM) and 123 with episodic migraine (EM) ages 18 to 65 using the Stigma Scale for Chronic Illness (SSCI), a recently developed 24-item instrument that allows for the quantitative assessment of stigma in persons with neurological disorders and comparisons across disorders, the Migraine Disability Scale (MIDAS), and the SF-12, a quality of life measure.
"The SSCI was markedly different in EM vs. CM (41.6-14.84 vs. 54.05-20.15, (p<0.001)," Dr. Park noted, "while patients with chronic neurologic diseases; stroke, epilepsy, multiple sclerosis, Alzheimer's, ALS and Parkinson's disease had a mean score of 42.7-19.7." In migraine, stigma correlated with disability as measured by MIDAS, and negatively with the physical and mental components of quality of life, measured by SF-12, although the correlations were not strong. "We were surprised not only by the degree of stigmatization experienced by the individuals with migraine, but also by how little we could explain by disability and quality of life.
"It is as important to understand the impact of migraine on patient quality of life as it is to understand its medical and physiological impact," said David Dodick, M.D., president of the AHS. "Our hope is that work like this will ultimately aid in the development of public health strategies to combat the stigmatizing effects of migraine." Dr Park agrees, and hopes that by understanding what drives the stigmatizing effect, and perhaps what protects certain individuals from feeling stigmatized we can improve the lives of persons with migraine. To round out the picture we should eventually understand stigmatization not just from the patient's perspective but also the attitudes of the families, employers and acquaintances who stigmatize persons with migraine, rounding out the picture and in order to devise more effective public health strategies.
More than 200 scientific papers and posters are being presented during the AHS meeting which is expected to draw some 500 migraine and headache health professionals including doctors, researchers and specialists.
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