Migraine stigma often impacts multiple personal, professional relationships

Key takeaways:

• A majority of survey respondents felt migraine-related stigma in one or more settings or relationships.
• The impact of migraine stigma was greater in those who reported more severe headache pain.

SAN DIEGO — The stigma that accompanies migraine is universal and often affects more than one personal or professional relationship, according to a speaker at the American Headache Society Annual Scientific Meeting.

“We know migraine stigma is prevalent, associated with all sorts of negative outcomes for our patients,” Dawn C. Buse, PhD, a clinical professor in the department of neurology at Albert Einstein College of Medicine of Yeshiva University, stated during her presentation.

Buse and colleagues sought to understand how migraine symptom severity affected how patients perceived and experienced external stigma.

They conducted the multinational, web-based, multilingual, cross-sectional Migraine Community Survey.

The survey recruited participants with diagnosed migraine from patient advocacy groups in Europe and Canada. Participants were asked a mixture of quantitative and qualitative questions that examined patient perspectives. Respondents could answer in a language of their choosing (10 total), with data stratified according to monthly headache day frequency, median headache pain severity and total participants.

A total of 1,132 participants were asked to identify sources of perceived stigma, to rate the impact of that stigma on a scale of 1 to 10 (1 lowest, 10 highest) as well as to explain whether they perceived stigma associated with the phrases “medication overuse” or “medication overuse headache” by their health care providers.

According to results, 79% of all respondents stated they felt stigma from one or more settings or relationships, with the next highest being 55% citing stigma within the workplace. A total of34% stated their health care provider was the source of stigma.

Data further showed that perceived blame or stigma emanating from their health care provider, based on the above coded phrases, was highest among those speaking Norwegian (65%), English (64%) and Dutch (61%).

Researchers additionally reported that work or study was the life domain most impacted by migraine stigma, followed by physical well-being, social life, mental health and relationship with a care professional or care team. The survey also showed that the impact of stigma was greater in those who reported more severe headache pain.

“Eliminating stigmatizing attitudes toward migraine is a very important challenge,” Buse said. “Looking at stigma by various factors is helpful because it might give us additional insights as to where and how we can successfully intervene.”