Learning the full impact of migraine through patient voices: A qualitative study

Abstract

Objective: To better characterize the ways that migraine affects multiple domains of life.Background: Further understanding of migraine burden is needed. Methods: Adults with migraine randomized to mindfulness-based stress reduction or headache education arms (n = 81) in two separate randomized clinical trials participated in semistructured in-person qualitative interviews conducted after the interventions. Interviews queried participants on migraine impact on life and were audio-recorded, transcribed, and summarized into a framework matrix. A master codebook was created until meaning saturation was reached and magnitude coding established code frequency. Themes and subthemes were identified using a constructivist grounded theory approach. Results: Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life, with 68% (55/81) endorsing specific domains of life impacted and 52% (42/81) describing impact on emotional health. Six main themes of migraine impact emerged: (1) global negative impact on overall life; (2) impact on emotional health; (3) impact on cognitive function; (4) impact on specific domains of life (work/career, family, social); (5) fear and avoidance (pain catastrophizing and anticipatory anxiety); and (6) internalized and externalized stigma. Participants reported how migraine (a) controls life, (b) makes life How to cite this article:

Migraine in the workplace

“…“If you didn't have migraine, how would your life be different?” and “What are your expectations for this visit?” [ 1 ]. These questions help neurologists understand the many ways migraine impacts their patients' lives and help target the visit on what matters to the patients.…”

“…These questions help neurologists understand the many ways migraine impacts their patients' lives and help target the visit on what matters to the patients. Despite acute and/or preventive treatment, migraine negatively impacts the lives of 90% of people with migraine in many domains including work, cognitive function, and emotional health [ 1 ]. Migraine is the leading cause of disability in adults under age 50 years and the second leading cause of disability at all other ages in the world [ 2 , 3 ].…”

“…About one in four persons with migraine have moderate to severe disability ranging from 12% in Europe, 19% in Asia, 22% in South America, to 32.3% in North America [ [4] , [5] , [6] , [7] ]. Migraine peaks during people's most productive years and as a result negatively affects their career and professional lives [ 1 , 8 , 9 ].…”

The value of the patient perspective in understanding the full burden of migraine

“…These results are presented in the current issue of Headache in our publication "Learning the full impact of migraine through patient voices: A qualitative study." 4 The findings from our large qualitative study, with 81 participants who provided nearly 3300 min of recorded interviews across two clinical trials conducted in two cities, highlight how people with migraine experience the disease as a major burden despite widespread treatment availability. Most participants in our study were using acute and/ or preventive medications, yet 90% reported that migraine still had a negative overall impact on their lives.…”

“…5,6 Having their experiences heard and validated builds rapport, the foundation of a productive therapeutic relationship. The very process of "telling your story" can itself be therapeutic for patients, 4 as narrative medicine has significant value. 7,8 Understanding the ways in which migraine most impacts a patient's life can help providers and patients develop shared agreement on the goals of migraine therapy, help the provider select a therapeutic option targeted to the patient's goals, and improve patient adherence to a collaboratively developed treatment plan.…”