New Evidence That It’s Time to OVERCOME Migraine Stigma

By Kayt Sukel | March 25, 2024 | Posted in

A population-based study, OVERCOME, reveals that a large number of people living with migraine experience stigma – and a poorer quality of life as a result.

For decades, people living with migraine have known that it also means living with stigma – negative attitudes directed toward them and harmful misperceptions held by others about their condition. While those with migraine often report stigma, which has been correlated with poorer health outcomes in some studies, it can be challenging to measure.

A new study now surmounts that hurdle, providing the most convincing data to date of a problem that individuals who have migraine unfortunately know all too well.

In the ObserVational survey of the Epidemiology, tReatment, and Care Of MigrainE (OVERCOME) study, academic researchers including first author Robert Shapiro, University of Vermont, Burlington, US, along with researchers from Eli Lilly and Company, which funded the study, report the first population-based estimate of migraine-related stigma and its effects on patient outcomes.

Nearly one-third of the 59,001 people with active migraine included in the study reported experiencing stigma often or very often. Moreover, experiencing stigma was associated with greater disability, reduced quality of life, and greater disease burden between migraine attacks (interictal burden).

In an interview with Migraine Science Collaborative, Joanna Kempner, Rutgers University, New Brunswick, US, a sociologist and the author of Not Tonight: Migraine and the Politics of Gender and Health, said the OVERCOME results provide “the kind of understanding that has, to date, been largely missing from headache medicine.

“These results show us that stigma has a big impact,” said Kempner, who was not involved with the study. “They should help headache specialists and researchers zoom out a bit, so they aren’t just thinking about migraine as a neurobiological or molecular process but are also considering the really important social aspects involved in disease.”

The study, along with an accompanying editorial by Kempner, appeared in the February 13, 2024, issue of Neurology.

Quantifying the effects of stigma with the right measures
Of the impetus for the study, Shapiro said, “There’s been a growing body of research indicating that stigma is a significant issue for people with migraine. We wanted to understand migraine-related stigma in a more comprehensive way with a large survey study where we could look at sociodemographic factors, disease-related factors, and co-morbidity factors. But we also were really interested in understanding the social context of migraine and how that may affect outcomes.”

So, the researchers recruited English-speaking US citizens over the age of 18 with active migraine. That resulted in a pool of 59,001 participants, the majority of them women (74.9%) and White (70.1%), with a mean age of 41.3 years. The investigators also collected information about geographic region, education level, employment status, and other sociodemographic factors.

Notably, participants filled out the Migraine-Related Stigma (MiRS) questionnaire. This is a new, validated metric comprising 12 questions that all start with “How often have you felt that others viewed your migraine or severe headache attacks,” for example, “… as a way to get attention.” Participants then responded on a five-point Likert scale, with the options of never, rarely, sometimes, often, or very often.

“The creation of this metric started with focus groups with people who have migraine. We then narrowed down a long list of questions with expert contextual opinions to a list of 12 questions,” said Shapiro. “As we validated the questions in this survey, to show it was capturing perceived stigma, we were also able to group the answers through an exploratory factor analysis into two distinct themes: minimizing burden and secondary gain.”

Secondary gain, Shapiro explained, is the attitude that somehow a person living with migraine is using their condition to avoid obligations or obtain benefits. Minimizing burden, on the other hand, is “a stigma toward the disease itself.”

“This is the idea that people who have migraine are complaining about a condition that does not warrant that level of complaint – that it’s not a serious condition and isn’t deserving of extra consideration or compassion,” Shapiro told MSC.

In addition to the new measure, participants completed a number of well-validated and commonly used questionnaires, including the Migraine Disability Assessment (MIDAS), Migraine Interictal Burden Scale-4 (MIBS-4), and Migraine-Specific Quality of Life Questionnaire (MSQ-RFR) – which look at disability, interictal burden, and overall quality of life, respectively. This would allow the researchers to determine the effects of stigma on important outcomes for those with migraine.

The team would also control for monthly headache days, sociodemographic factors, and clinical characteristics.

More stigma means poorer outcomes
When Shapiro and colleagues looked at MiRS scores, they found that 18,708 of individuals surveyed (31.7%) experienced secondary gain and/or minimizing burden often/very often. In addition, the proportion of people who experienced at least one of these forms of stigma often/very often nearly doubled in those who had headaches 15 or more days a month (25.5% for fewer than four headache days compared to 47.5% for 15 headache days or more).

With regard to disability, 74.9% of those who reported experiencing secondary gain or minimizing burden stigma often/very often had moderate to severe disability according to MIDAS, compared to 18.6% of participants who didn’t report stigma. In addition, MIDAS scores increased as stigma and headache days increased. Notably, the risk for increased disability was double in those who reported both secondary gain and minimizing burden often/very often, compared to those who never experienced stigma.

Similarly, those who experienced stigma also had greater interictal burden, according to MIBS-4. Here, 79.7% of people who experienced both secondary gain and minimizing burden stigma often/very often also reported severe interictal burden compared with 11.2% of respondents who never experienced stigma.

“This is the degree to which people recognize the consequences of having migraine – if they feel more tired or are anxious about having another migraine, or still feel like they have to make adjustments to their schedules even between migraine attacks,” said Shapiro. “This, like MIDAS, strongly correlated with the magnitude of stigma across every frequency of headache days per month. So it doesn’t matter if you had only zero to three headache days per month; your interictal burden scale would still be high if stigma was high.”

In addition, those who experienced stigma often/very often had a reduction in quality of life, which also decreased as monthly headache days increased, according to the MSQ-RFR score.

“What these results say to me, when you put them all together, is that migraine is seen by society and by the media as just a bad headache – not a debilitating disease – and that stigma is affecting the people who live with this disease,” Shapiro said. “Some of these data with respect to stigma also suggest that the social context of this disease is perhaps a bigger driver of quality of life for people who live with migraine than how many days they have headache per month. That was a stunning thing to see.”

Indeed, those who experienced both minimizing burden and secondary gain stigma often/very often but had fewer than five monthly headache days had a lower quality of life even than those who never experienced stigma but had more than 25 monthly headache days.

Understanding a complicated, bidirectional relationship
Kempner said the results are a great first step to understanding the relationship between stigma and migraine outcomes, but whether that relationship is a causal one remains unclear – something researchers will need to figure out in order to better address migraine stigma in the future.

She also hopes other studies will make use of the MiRS to start asking different questions in order to provide new insight into the relationship between stigma and migraine.

“This is likely a bidirectional relationship, with migraine burden contributing to stigma and stigma contributing to migraine burden, and there’s so much more that needs to be done so we can understand it,” she said. “It would be great to use these results to drill down and start doing smaller-scale ethnographic or qualitative research studies to get a better understanding of how stigma manifests in migraine patients who are seen outside the headache specialty clinic, like in primary care or in public health centers.”

Shapiro said he hopes that researchers and clinicians appreciate that the study is one of the first forays into understanding stigma’s role in migraine, while urging on future research.

“Migraine is the most stigmatized neurological disease. It’s right up there with depression and anxiety,” he said. “It is astounding to me how strongly this disease is shunned within popular understanding, not because it’s a threat but because it’s seen as something quite benign.”

He continued, “I believe we need to change the way people talk about this disease. But trying to figure out how to get beyond stigma is a big puzzle that is going to require a ton more research. It’s a really hard problem, but, if we all work together, and we do the research, I believe we can come up with ways to reduce stigma and help get patients the treatments and support they need.”

Kayt Sukel is a freelance writer based outside Houston, Texas.

Disclosure: Dr. Shapiro reports that he has received financial and authorship compensation for research consulting and Data Monitoring Committee service from Eli Lilly and Company.

References
Migraine-related stigma and its relationship to disability, interictal burden, and quality of life: Results of the OVERCOME (US) study.
Shapiro et al.
Neurology. 2024 Feb 13;102(3):e208074.

Brains under siege: Assessing the harmful effects of migraine-related stigma.
Kempner J.
Neurology.2024 Feb 13;102(3):e209192.

Image credit: 123RF Stock Photo.

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Kayt Sukel is a passionate traveler and science writer who has no problem tackling interesting (and often taboo) subjects spanning love, sex, science, technology, travel and politics. Her work has appeared in the Atlantic Monthly, New Scientist, USA Today, Pacific Standard, the Washington Post, ISLANDS, Parenting, the Bark, American Baby, National Geographic Traveler, and the AARP Bulletin, among others. She has written stories about out-of-body experiences, artificial intelligence in medicine, new advances in pain treatments, and why one should travel to exotic lands with young children.

She is the author of two books: Dirty Minds: How Our Brains Influence Love, Sex, and Relationships (re-titled as This Is Your Brain on Sex: The Science Behind the Search for Love in paperback) and The Art of Risk: The New Science of Courage, Caution, and Chance.

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