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

Paige M. Estave, Summerlyn Beeghly, Reid Anderson, Caitlyn Margol, Mariam Shakir, Geena George, Anissa Berger, Nathaniel O’Connell, Rebecca Burch, Niina Haas, Scott W. Powers, Elizabeth Seng, Dawn C. Buse, Richard B. Lipton, Rebecca Erwin Wells

Research output: Contribution to journalArticlepeer-review

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 difficult, and (c) causes disability during attacks, with participants (d) experiencing a lack of control and/or (e) attempting to push through despite migraine. Emotional health was affected through (a) isolation, (b) anxiety, (c) frustration/anger, (d) guilt, (e) mood changes/irritability, and (f) depression/hopelessness. Cognitive function was affected through concentration and communication difficulties. Conclusions: 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. A greater understanding of the deep burden of this chronic neurological disease is needed to effectively target and treat what is most important to those living with migraine.

Original languageEnglish (US)
JournalHeadache
DOIs
StateAccepted/In press - 2021

Keywords

  • chronic illness
  • coping
  • disease burden
  • headache
  • patient-centered
  • quality of life

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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