Q&A: Migraine causes 'tremendous and complex burden' for patients
Rebecca Erwin Wells, MD, MPH, received the Early Career Award at the American Headache Society Annual Scientific Meeting in recognition of her paper that examined the impact of migraine on “multiple domains of life.”
Wells, an associate professor of neurology at Wake Forest School of Medicine in Winston-Salem, North Carolina, and colleagues conducted semi-structured qualitative interviews with adults (n = 81) participating in two separate randomized clinical trials. Researchers randomly assigned the participants in the trials to mindfulness-based stress reduction or headache education and conducted the interviews after the interventions had been completed.
The researchers found that, while most participants were being treated with acute and/or prophylactic medications, 90% stated that migraine had a negative impact on overall life, with 68% noting that specific domains of their life had been impacted and 52% describing migraine’s impact on emotional health. Healio Neurology spoke with Wells to learn more about the study results.
Healio Neurology: What prompted this research?
Wells: The results in this study came to us directly from the patients. To better understand how migraine impacts patients’ lives, we analyzed interviews with patients that were conducted as part of two separate clinical trials. Both trials evaluated mindfulness in migraine. The study was conducted across two different cities, Boston, and Winston-Salem, North Carolina, and provided nearly 3,300 minutes of recorded interviews. The study really highlighted how people with migraine experience the disease as a major burden, despite widespread treatment availability. Migraine is the second leading cause of disability worldwide, and we really need to better characterize this disability. That is what our study has done.
The original goal of conducting these interviews was to better understand participants’ experiences in the clinical trials. We wanted to know how the interventions impacted their lives. We began the interviews by asking patients: How does migraine impact your life? It was fascinating; we were blown away by the depth of responses to this seemingly simple yet profoundly important question. When we began analyzing the interviews, we used inductive reasoning, which involved immersing ourselves in the data, reading and digesting it, so we felt like we could make sense of what participants were saying, to understand what they felt and what they experienced, with the original intent to understand how people felt the clinical interventions were working or not working.
The impact of headache on patients’ lives immediately became this prominent pattern that emerged as patients richly illuminated the patient perspective on the tremendous burden for this common neurological disease. It was as if the patients were directly speaking to us, wanting their voices heard and relayed to the world about how migraine impacts their lives.
Healio Neurology: What findings did you highlight during your lecture?
Wells: First, the magnitude and pervasiveness of the findings showed the enormity of the impact. Despite most patients being treated with acute or prophylactic medications, 90% reported that migraine had a negative impact on their overall life, while 68% endorsed specific domains of their lives that were impacted, even though we did not ask about specific domains of life, and 52% described its impact on emotional health, in ways beyond formal diagnoses of depression or anxiety, which we commonly see.
The second part focused on how migraine impacts patients’ lives in ways that we often do not ask about, measure or target in clinical practice or research, but clearly need to. For example, migraine affects patients’ ability to function in daily life, but it also affects relationships with colleagues at work and with family and friends. We found that migraine contributes to isolation, frustration, guilt, fear, avoidance behaviors and stigma.
Here is a simple example. A patient says, “I have a migraine,” and a family member says, “What did you do to cause it?” This simple interaction demonstrates the layers of impact that we saw in our study, that migraine can create feelings of guilt as if it is the patient's fault, which then contributes to this stigma of migraine, that patients call their migraine attacks to occur. This sets up a pattern of avoidance behavior, where the patient tries to do everything possible to avoid things that they think may set off their attacks.
I also highlighted how important the patient voice is in moving forward with clinical care and research for the field of headache medicine.
The study demonstrated the tremendous and complex burden of migraine on adults’ lives and highlighted areas for further research. More than half of the patients in our study reported that migraine had a negative impact on emotional health beyond typical psychiatric diagnoses like depression or anxiety, where patients described feelings of guilt for missing work or family or social activities, which then leads to feelings of frustration and isolation.
Our study showed that factors outside of migraine attacks — what we call the interictal period, or the time in between attacks — are really important in anticipatory anxiety, or fear specifically of the next attack, and avoidance behaviors that lead to these life restrictions, which are major contributors to poor quality of life.
We also picked up the themes of internalized and externalized stigma, which underscored the need for societal change in migraine awareness and perception. One of our participants said that sometimes she feels as if she has a rotten brain. Other participants talked about the ictal effects on cognition and mood during migraine attacks; they described how the migraine attacks affect their ability to think clearly and to concentrate and also their mood. That shows us that we need to better understand these factors to see if these are related to the pain or if they are actually a more direct expression of the neural dysfunction: Is it part of the migraine pathophysiology that people can’t think clearly, rather than a result of the pain?
Healio Neurology: Does this work raise questions for future research?
Wells: In this study, we heard from treatment-seeking participants with significant disease burden who were interested in non-drug interventions. Future studies could include a broader population of patients with migraine. This study also focused on adults with migraine, but it would be great to include additional research on children, adolescents and their families.
For me personally, this study made me realize that, moving forward as a researcher and as a clinician, we need to intentionally work to identify and target what matters most to patients to direct our research endeavors and treatment approaches to make sure that the work that we do really addresses the needs of those living with migraine.
Healio Neurology: Is there anything else you would like to mention?
Wells: I have to acknowledge the team that we worked with for this research. We began to analyze these data over 2 years ago. I worked with an entire team of undergraduate students, Master’s degree students and MD/PhD students for this research, and I am so appreciative. We had weekly team meetings for nearly 2 years to work through these data. We were about halfway through when the pandemic hit and the entire team went virtual. Several of the students graduated from college and moved to different parts of the country. However, because we were working virtually, they were able to stay engaged. I am so honored by this recognition, because this research reflects such a team effort with students who were really engaged and invested in this research. The first author, Paige M. Estave, PhD, was working toward her PhD and has earned her PhD. We brought on experts in the field who have been doing research on the impact of migraine on patients’ lives for many years to help us provide a broader context, as well as a migraine patient advocate who has expertise in qualitative research. It meant a lot to include a patient advocate on our research team. From my perspective, this study reflects many different levels of expertise, all working together to understand this patient perspective.
Wells R. Early Career Award – Learning the full impact of migraine through patient voices: Results of a qualitative study. Presented at: American Headache Society Annual Scientific Meeting; June 3-6, 2021 (virtual meeting).