Stigma of migraine is significant; worse for those with chronic migraine
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.
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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.
About the American Headache Society
The American Headache Society® (AHS) is a professional society of health care providers dedicated to the study and treatment of headache and face pain. The Society’s objectives are to promote the exchange of information and ideas concerning the causes and treatments of headache and related painful disorders. Educating physicians, health professionals and the public and encouraging scientific research are the primary functions of this organization. AHS activities include an annual scientific meeting, a comprehensive headache symposium, regional symposia for neurologists and family practice physicians, publication of the journal Headache and sponsorship of the AHS Committee for Headache Education (ACHE). http://www.americanheadachesociety.org
About the American Migraine Foundation
The American Migraine Foundation is a non-profit foundation supported by the American Headache Society and generous donors dedicated to the advancement of migraine research. The mission of this newly formed foundation is to support innovative research that will lead to improvement in the lives of those who suffer from migraine and other disabling headaches. http://www.americanmigrainefoundation.org
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Title: The Stigma of Migraine
Authors: 1. Jung E Park1 , MD
2. Joanna Kempner2 , PhD
3. William B Young1 , MD
1. Thomas Jefferson University, Neurology, Philadelphia, PA, 19107, United States
2. Rutgers, The State University, Department of Sociology, New Brunswick, NJ, 08854, United States
Objectives: To characterize stigma in patients with chronic and episodic migraines.
Background: Stigma is an established construct in the social sciences that describes an attribute, trait or disorder that is deeply discrediting and may elicit some form of community sanction. Research has shown 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. But stigma attaches to disease to varying degrees. To date, there has been no research on stigma in people with migraine. This study will look at stigma in both chronic and episodic migraine patients, in order to understand how stigma attaches to migraine. This effort will ultimately aid in the development of public health strategies to combat the stigmatizing effects of migraine. Methods: We conducted a survey among outpatients at the Jefferson Headache Clinic in the department of Neurology at Thomas Jefferson University Hospital. 123 patients with chronic migraine(CM) and 123 patients with episodic migraine(EM) age 18 to 65 were assessed for basic demographic information, given the Stigma Scale for Chronic Illness (SSCI), and the Migraine Disability Scale (MIDAS). The Stigma Scale for Chronic Illness (SSCI) is a recently developed 24-item instrument that allows for the quantitative assessment of stigma in persons with neurological disorders and comparisons across disorders. Results: The average age of study participants was 42.8, which differed for EM and CM (44.7±12.5 vs. 40.9±12.2, p=0.016). 91.5% of patients were white and 84% female. Chronic migaineurs had slightly lower educational achievements and significantly lower incomes (p=0.13 and p<0.001). MIDAS scores differed between groups: the median score was 18 for EM and 60 for CM (p<0.001).
The SSCI was markedly different in EM vs. CM, 41.6±14.84 vs