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Cited by 81Migraine and Headache StudiesTraumatic Brain Injury ResearchMusculoskeletal pain and rehabilitation

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

Open access
Estave, Paige M., Beeghly, Summerlyn, Anderson, Reid, Margol, Caitlyn, Shakir, Mariam, George, Geena, Berger, Anissa, O’Connell, Nathaniel +7 more·2021·Headache The Journal of Head and Face Pain
DOI 10.1111/head.14151PMC PMC8428538
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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.

Integrity signals

Registry

Crossref · 10.1111/head.14151

Cites

53 of 53 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

0 of 2 cited sources checked · 0 supported · 0 flagged

  • Findingown data

    52% (42/81) of participants described migraine impact on emotional health.

    “and 52% (42/81) describing impact on emotional health”
    Quote in the paperNot a substantial claim
  • Findingown data

    Cognitive function was affected through concentration and communication difficulties.

    “Cognitive function was affected through both concentration and communication difficulties (Table 3).”
    Quote in the paperNot a substantial claim
  • Findingown data

    68% (55/81) of participants endorsed specific domains of life impacted by migraine.

    “with 68% (55/81) endorsing specific domains of life impacted”
    Quote in the paperNot a substantial claim
  • Findingown data

    Both externalized and internalized stigma were reported.

    “Both externalized and internalized stigma were also reported (Table 5).”
    Quote in the paperNot a substantial claim
  • May combine two claims. 11
  • The quote only partly states this claim. 2
  • Classified as probably not a substantial claim. 1

  • May combine two claims.

    Findingown data

    Fear and avoidance showed up through pain catastrophizing, anticipatory anxiety, and avoidance behavior due to fear of migraine or fear of migraine trigger.

    “Fear and avoidance showed up (Table 5) through (a) pain catastrophizing; (b) anticipatory anxiety; and (c) avoidance behavior due to fear of migraine or fear of migraine trigger.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Themes and subthemes were similarly represented across MBSR and HA Education groups, with a few marginally significant differences.

    “Overall, themes and subthemes were similarly represented across both MBSR and HA Education groups, although a few marginally significant differences across groups were seen (Figures 1 and 2).”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    Emotional health was affected through isolation, anxiety, frustration/anger, guilt, mood changes/irritability, and depression/hopelessness.

    “Emotional health was affected through (a) isolation; (b) anxiety; (c) frustration/anger; (d) guilt; (e) mood changes/irritability; and (f) depression/hopelessness (Table 3).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Six main themes of migraine impact emerged: global negative impact on overall life; emotional health; cognitive function; specific domains of life; fear and avoidance; and internalized and externalized stigma.

    “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.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Migraine impacted multiple domains of life including work/career, family life, and social life.

    “Migraine impacted multiple domains of life (Table 4) including the following: (a) work/career; (b) family life; and (c) social life.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    90% (73/81) of participants reported migraine had a negative impact on overall life despite most being treated with acute and/or prophylactic medications.

    “Despite most participants being treated with acute and/or prophylactic medications, 90% (73/81) reported migraine had a negative impact on overall life”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationown data

    Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life.

    “Migraine has a global negative impact on overall life, cognitive and emotional health, work, family, and social life.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Interpretationown data

    The impact of migraine on emotional health extended beyond depression and anxiety, with isolation, anger, frustration, and guilt more prominent in interviews than formal depression.

    “Furthermore, the impact on emotional health extended beyond the well-described comorbidities of depression and/or anxiety with migraine.15,17 For example, reports of isolation, anger, frustration, and guilt were more prominent in interviews than was formal depression.”
    Quote in the paperSubstantial claim0 of 2 sources checked
    • cites [15] source
    • cites [17] source

  • May combine two claims.

    Interpretationown data

    Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma.

    “Migraine contributes to isolation, frustration, guilt, fear, avoidance behavior, and stigma.”
    Quote in the paperSubstantial claim

  • May combine two claims. The quote only partly states this claim.

    Study design and conductown data

    The study had limitations including a predominantly white educated female sample, possible selection bias reducing generalizability, and possible influence of the interventions on participants' perceptions.

    “Baseline characteristics of participants in both studies were predominantly white educated women, thus a nondiverse patient population.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S1 (asserted), S3 (load-bearing), S4 (based). May combine two claims. The quote only partly states this claim.

    Study design and conductnone given

    The study used a large sample of 81 qualitative interviews with patients diagnosed by UCNS-certified headache specialists using ICHD criteria, and used triangulation, meaning saturation, and interrater reliability checks.

    “This study has several important strengths, including having a large sample size of 81 qualitative interviews of patients with migraine diagnosed by United Council for Neurologic Subspecialties-certified headache specialists using International Classification of Headache Disorders diagnostic criteria.”
    Quote in the paperNot a substantial claim
11 of 11

  • The paper relies on this without support.

    Participants who were treatment-seeking and willing to participate in a nonpharmacological trial experienced disease burden they attributed to migraine and could introspect on the aspects of quality of life impacted by migraine.

    “These participants can be expected to be willing to introspect on the various aspects of quality of life impacted by migraine as they were treatment-seeking, suggesting they experienced disease burden they attributed to migraine.”
1 of 1

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

  • Pain can be isolating, especially for people with sensory hypersensitivities that prevent full engagement in life activities, as in migraine.

    “Pain can be isolating,38 especially for those with sensory hypersensitivities that preclude full engagement in life activities, such as in migraine.14”

    From Mechanisms of mindfulness in patients with migraine: Results of a qualitative study. (2023) · cites this paper as [14]

    The Results and Discussion (pages unavailable) report that migraine restricts social and valued life activities, while the Conclusion lists light and sound sensitivity as typical migraine symptoms. The paper does not establish that sensory hypersensitivities are what prevent full engagement in those activities; it attributes the described avoidance chiefly to fear of attacks or triggers. The separate citation attached to the sentence’s general statement that pain can be isolating is not assessed here. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • These factors may play a more meaningful role in the day-to-day experiences of people living with migraine than previously recognized.

    “These factors may play a more meaningful role in individuals’ day-to-day experiences of living with migraine than previously recognized.14”

    From Mechanisms of mindfulness in patients with migraine: Results of a qualitative study. (2023) · cites this paper as [14]

Cites

Flagged first, then by citations

2 of the 55 references couldn’t be matched to a known paper.

Research works printed but not linked: 5

  1. Saldana J, 2016, The Coding Manual for Qualitative Researchers
  2. Buse DC, 2017, Patient‐reported outcomes from the STRIVE trial: a phase 3, randomized, double‐blind study of erenumab in subjects with episodic migraine, Headache, 57, 198
  3. Ashina M, 2017, Patient‐reported outcomes from the ARISE trial: a phase 3, randomized, double‐blind study of erenumab in subjects with episodic migraine, Headache, 57
  4. Shapiro RE, 2019, Stigmatizing attitudes about migraine by people without migraine: results of the overcome study, Headache, 59, 14
  5. Archibald N, 1999, Resource Utilization and Costs of Care for Treatment of Chronic Headache

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Authors
Estave, P. M., Beeghly, S., Anderson, R., Margol, C., Shakir, M., George, G., Berger, A., O’Connell, N., Burch, R., Haas, N., Powers, S. W., Seng, E., Buse, D. C., Lipton, R. B., & Wells, R. E.
Affiliations
  • Atrium Health Wake Forest Baptist (US)
  • Department of Biostatistics and Data Science Wake Forest Baptist Health Winston‐Salem NC USA
  • Brigham and Women's Hospital (US)
  • BrightOutcome (United States) (US)
  • Cincinnati Children's Hospital Medical Center (US)
  • Albert Einstein College of Medicine (US)
Corresponding author
Wells, Rebecca Erwin
ORCID
Venue
Headache The Journal of Head and Face Pain
Publisher
Wiley
Published
2021-06-03
Volume
61
Issue
7
Pages
1004-1020
ISSN
  • 0017-8748 (ISSN-L)
  • 1526-4610
DOI
10.1111/head.14151
PMC
PMC8428538
OpenAlex
W3165853944
Semantic Scholar
3569e486e3346c089aae028cdd483e49d1f06051
Cited by
81
References
55
Citations by year
2026: 15 · 2025: 17 · 2024: 25 · 2023: 15 · 2022: 6 · 2021: 3
FWCI
8.78
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Headache The Journal of Head and Face Pain (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Center for Advancing Translational Sciences (UL1TR001420)
  • National Center for Complementary and Integrative Health (K23AT008406)
  • Center for Strategic Scientific Initiatives, National Cancer Institute (P30CA012197)
  • National Institute of Neurological Disorders and Stroke (K23NS096107)
  • American Headache Society (Fellowship)
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Migraine and Headache Studies
  • Health Sciences › Medicine › Epidemiology › Traumatic Brain Injury Research
  • Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
Keywords
migraine, migraine burden, patient experience, emotional well-being, cognitive function, stigma, fear and avoidance, pain catastrophizing, anticipatory anxiety, social isolation, mindfulness-based stress reduction, headache education, disability
MeSH terms
Adaptation, Psychological, Adult, Anxiety, Depression, Female, Humans, Male, Middle Aged, Migraine Disorders, Quality of Life, Cost of Illness, Qualitative Research, Social Stigma, Catastrophization, Cognitive Dysfunction

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