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

Randomized Controlled Trial

. 2021 Jul;61(7):1004-1020.

doi: 10.1111/head.14151. Epub 2021 Jun 3.

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Randomized Controlled Trial

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

Paige M Estave et al. Headache. 2021 Jul.

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.

Keywords: chronic illness; coping; disease burden; headache; patient-centered; quality of life.

© 2021 American Headache Society.

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Figures

FIGURE 1
FIGURE 1

Global negative impact of migraine (1A), impact of migraine on domains of life (1B), and impact on specific domains of life (1C) across MBSR and HA Education Intervention Arms. (A) The global negative impact on overall life was similarly high for both groups: 88% for the MBSR group (n = 38/43) and 92% for Headache Education (n = 35/38), p = 0.716. (B) Impact of migraine on domains of life showed similar impact across MBSR (65%, n = 28/43) and HA Education (71%, n = 27/38), p = 0.638. (C) Impact of migraine across specific domains of life shows a potential difference across work (MBSR 37%, n = 16/43 vs. HA Education 55%, n = 21/38, p = 0.122) without differences across Family (MBSR 40%, n = 17/43 vs. HA Education 32%, n = 12/38, p = 0.494) or Social (MBSR 33% n = 14/43 vs. HA Education 32%, n = 12/38, p > 0.999)

FIGURE 2
FIGURE 2

Impact of migraine on emotional health across mindfulness-based stress reduction (MBSR) and headache (HA) Education intervention arms. (A) Impact of migraine on emotional health showed a potential difference across MBSR (60%, n = 26/43) vs. HA Education (42%, n = 16/38), p = 0.122. (B) Impact of migraine across different subthemes of emotional health showed no group differences across isolation (MBSR 28%, n = 12/43, vs. HA Education 34%, n = 13/38, p = 0.632), a potential difference across frustration/anger (MBSR 30%, n = 13/43 vs. HA Education 11%, n = 4/38, p = 0.054), and without differences across anxiety (MBSR 26%, n = 11/43 vs. HA Education 21%, n = 8/38, p = 0.794). Statistically significant differences existed across mood (MBSR 26%, n = 11/43 vs. HA Education 8%, n = 3/38; p = 0.043). No differences were seen across guilt (MBSR 16%, n = 7/43 vs. HA education 24%, n = 9/38, p = 0.419); potential differences existed across depression (MBSR 14%, n = 6/43 vs. HA Education 3%, n = 1/38, p = 0.114)

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