Q&A: Survey highlights 'broad and negative impact' of migraine on patients’ lives
Half of people with migraine reported being “extremely dissatisfied” with their ability to control their disease in a survey from the National Headache Foundation, while most patients on a preventive treatment wished for better options.
Dissatisfaction with the ability to control migraine disease resulted in “a range of emotions,” according to the survey results, including frustration, exhaustion, stress and anxiety. Most patients surveyed also reported exhaustion related to “trying and failing new preventive treatments” (76%). However, most participants (82%) said they were “hopeful and optimistic” when initiating a new treatment. More than half of these respondents (53%) said the single most important aspect of a novel preventive treatment for migraine was the ability to provide more migraine-free days per month.
The survey also examined the ways in which migraine “disproportionately” impacts women and people of color. Nearly half of women with migraine (48%) reported that hormonal changes related to menstruation, menopause or childbirth resulted in worse migraine activity. While Black and Hispanic people with migraine were more likely to experience worry, fear and anxiety related to taking a preventive treatment, both groups — including 77% of Black patients and 73% of Hispanic patients — also said they wished they had sought out migraine care earlier.
Healio Neurology spoke with Jill Dehlin, RN, CHES, chairperson of the National Headache Foundation’s Patient Leadership Council, to learn more about the survey results and the implications for healthcare providers.
Healio Neurology: What prompted this survey?
Dehlin: The National Headache Foundation was founded 51 years ago and remains steadfast in its mission to increase awareness of migraine as a neurological disease and its impact on people. It is important for us as a patient advocacy organization to listen to people with migraine and obtain their perspectives on this debilitating disease and how it affects their everyday life. As such, we often conduct surveys in partnership with the pharmaceutical industry and academia to learn more about areas of interest or to check in and ensure that the information and resources we provide are valuable to our community.
Healio Neurology: Can you provide an overview of the survey findings?
Dehlin: The survey found that migraine disease has a broad and negative impact on people's lives, affecting their energy level (64%), mental clarity (57%), productivity (54%), personal relationships (31-50%) and professional success (49%). Specifically, 65% of respondents said migraine disease makes them feel like life is passing them by and 52% say they cannot make plans with friends, family or colleagues because their disease is so unpredictable.
Further, more than half (67%) acknowledged that their risk for anxiety and depression increases as the number of migraine attacks increase. When it came to preventive treatment experience, 84% of people currently taking a preventive treatment wished there were a better treatment option; they expressed specific desires for what they want from their preventive treatment. The single most important attribute for a preventive migraine treatment was more migraine-free days per month (53%).
Healio Neurology: Why did the survey look specifically at women and people of color?
Dehlin: Our national survey included nearly 1,200 people with migraine in the United States, including women and men. Most of the people with migraine are women and our survey population reflected that. But we also looked at the different experiences of Black and Hispanic people with migraine. We sought to understand the unmet needs that remain and the desires of the migraine community for preventive treatments. Interestingly, more than two-thirds (67%) of all people with migraine who have tried or are currently taking a preventive treatment feel like they are chasing an unreachable goal to get their migraine disease under control.
Healio Neurology: Can you elaborate on the results among Black and Hispanic respondents?
Dehlin: Our survey looked at the different experiences and feelings among people of color with migraine. Black and Hispanic people with migraine were more likely to feel worry, fear and anxiety at the thought of taking a preventive treatment. However, when asked about treating their disease overall, 77% of Black and 73% of Hispanic responders say they wish they had sought care sooner. We found that Black people with migraine grapple with negative feelings about managing their migraine more frequently than other ethnicities. For example, 66% often feel a keen sense of frustration in adjusting treatments and 66% feel that they are a "guinea pig" as their healthcare provider tries to find the right treatment.
Hispanic people with migraine had similar experiences but were less aware of preventive treatment options than others. For example, 73% feel they are juggling migraine treatments trying to find the right one and feel like they are chasing a goal that they cannot reach to get their migraine disease under control. While 9% of the overall study population was told there was nothing that could be done for their disease, this happened to 15% of Hispanic people in our study. Hispanic people with migraine were more likely to feel that migraine diminishes their role in their families, as partners and as parents.
The educational gaps are far more pronounced in non-White ethnicities, including Hispanic people, Black people and all other groups. There is an opportunity to invest and further education among people of color to ensure those suffering with migraine do not suffer longer or more than necessary to find the right treatment, prepared with the knowledge that migraine can be a progressive disease: Poor control can lead to more migraine attacks. More migraine attacks can also lead to an increase in anxiety and depression. Overuse of some over the counter and prescription medications to treat acute attacks may lead to medication overuse headache, also known as rebound headache or medication adaptation headache.
Healio Neurology: Did anything unusual or surprising come out of the survey results?
Dehlin: There was nothing surprising per se, as a person who has lived with migraine for more than 20 years and a patient advocate. There is a stigma surrounding migraine disease and a lot of misunderstanding about its impact. We need to ensure no patient, regardless of [sex], race or ethnicity, suffers longer than they need to because they feel their disease isn't "bad enough." Only 18% of participants are fully satisfied with their current preventive treatment, so it is not surprising that nearly all (98%) would be willing to try a new oral treatment.
Healio Neurology: How can these findings be used in clinical practice?
Dehlin: Our survey found that for people who experienced an increase in frequency/severity of their migraine, 70% saw a healthcare provider within a year and 33% saw one within three months for worsening migraine. However, 62% reported wishing they had seen their healthcare provider sooner. While most people are satisfied with their healthcare provider's knowledge of current treatments and acknowledge the frustrations of living with migraine disease, only about half (47%) recalled their provider discussing preventive treatment options with them. Barriers to taking preventive treatments included concerns about side effects (33%) or that their insurance would not cover treatment or have a high copay for the treatment. Some (25%) believed they could manage the attacks on their own or that the treatment would not work, yet most would consider a new oral preventive treatment. Over 50% felt hopeful about trying a new oral preventive.
For healthcare providers, it is important to acknowledge and address the impact of migraine disease on a person's life beyond just the pain: emotionally, professionally and personally. Nearly one in five women in the United States have migraine disease, yet many in our study did not bring it up to their healthcare provider because they thought they could manage it on their own or that there was nothing the healthcare provider could do about it. This is something clinicians should be aware of.
Our goal is to provide information and resources to help people with migraine understand how to best manage their disease day-to-day. This includes educating people around them, such as family, friends and co-workers, about migraine and the impact on their everyday lives. This also includes information that can help guide discussions with their healthcare providers to ensure they receive the care they deserve.
National Headache Foundation. Preventing migraine attacks: A current perspective. Available at: https://headaches.org/2021/05/18/preventing-migraine-attacks-a-current-perspective/. Accessed May 24, 2021.