During the Early Career Award Lecture at #AHSAM21, Dr Rebecca Wells, Wake Forest Baptist Health, presented results of a qualitative study of patient voices on migraine that sought to better characterize the ways that migraine affects multiple domains of daily life. Despite receiving treatment, 90% of people report that migraine has a negative impact on overall life and 50% describe an impact on emotional health. A greater understanding of the deep burden of this disease will help to identify what is most important to those living with migraine and may lead to more effective and targeted treatment.
In innovative research conducted by Dr Wells and colleagues, the considerable impact of migraine on patients’ lives has been captured by recording patient voices through in-person interviews conducted with participants of interventional studies (N=81).1
Despite most participants being treated with acute and/or prophylactic medications, 90% of people reported that migraine has a negative impact on overall life. Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life. Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma.
“Migraine makes you feel like you are walking around with a weight on your shoulders”
Migraine impacts all aspects of daily life
Six main themes of migraine impact emerged:
- global negative impact on overall life
- impact on emotional health
- impact on cognitive function
- impact on specific domains of life (work/career, family, social)
- fear and avoidance (pain catastrophizing and anticipatory anxiety); and
- stigma surrounding migraine.
People reported how migraine controls their life, makes life more difficult, and causes disability during attacks, with some participants experiencing a lack of control, while others attempted to push through despite migraine.
“Migraine impacts my ability to do the things that I want to do”
Migraine has an emotional toll
“Migraines ruin family time and make me feel guilty”
Emotional health was affected in 50% of participants; beyond depression and anxiety this was felt through isolation, frustration/anger, guilt, mood changes/irritability, and a sense of hopelessness. Not only is a migraine episode highly debilitating, but the fear of migraine onset also often creates behaviors in anticipation of a migraine attack, amplifying migraine’s effects with increased anticipatory anxiety, pain catastrophizing, isolation, and hopelessness.
“Migraine makes you feel like nobody understands and it can get you down sometimes emotionally”
Migraine reduces cognitive function
“Migraines cause a lot of anxiety because I don’t know when I’m going to have one”
Cognitive function was affected through concentration and communication difficulties. Difficulty concentrating, communicating, and experiencing irritability are disabling ictal symptoms that affect functionality beyond pain and the typical associated migraine symptoms (e.g., photophobia, phonophobia, nausea, vomiting). Migraine altered functioning during both ictal and interictal periods and affected roles within relationships (family, social, work) and work/career prospects.
“Migraine attacks really impact my productivity and ability to reach my goals”
Dr Wells summarized that the full impact of migraine is best understood through listening to patients. Learning from patients themselves will help clinicians and researchers to effectively target and treat what is most important to those living with migraine.
AHSAM : American Headache Society Annual Meeting
BE-NOTPR-0055; approval date : 03.2022