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"You will eat shoe polish if you think it would help"-Familiar and lesser-known themes identified from mixed-methods analysis of a cluster headache survey.
- Source :
-
Headache [Headache] 2021 Feb; Vol. 61 (2), pp. 318-328. Date of Electronic Publication: 2021 Jan 27. - Publication Year :
- 2021
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Abstract
- Objective: To characterize patient-reported ideas and concerns about cluster headache, treatment options, and management strategies.<br />Background: Cluster headache patients experience severe pain and often suffer additional consequences from their disease. Patients have identified methods to cope with and combat cluster headache that are not widely known.<br />Methods: Secondary analysis was performed using deidentified data from the online Clusterbusters Medication Use survey, wherein 10 questions allowed for freely written comments. Using mixed-methods techniques, neurologists with expertise in headache medicine identified themes from these comments. Subgroup analysis sought to identify variables associated with specific themes.<br />Results: Among 2274 free-text responses from 493 adult participants, 23 themes were identified. Themes commonly discussed in the literature included such topics as "nothing worked" (24.7%, 122/493), "side effects" (12.8%, 63/493), and difficulties with "access/cost" (2.4%, 12/493). Less widely recognized themes included the use of "illicit substances" (35.5%, 175/493) and "vitamins/supplements" (12.2%, 60/493) in disease management. Lesser-known themes included "coffee" (5.3%, 26/493) and "exercise/physical activity" (4.7%, 23/493). Using strict significance criteria, no subgroup was associated with any theme. Several poignant quotes highlighted patient thoughts and experiences.<br />Conclusions: This mixed-methods analysis identified challenges endured by cluster headache patients, as well as a variety of patient-directed disease management approaches. The volunteered information spotlights pharmacological, physiological, and psychological aspects of cluster headache that warrant further exploratory and interventional investigation.<br /> (© 2020 American Headache Society.)
Details
- Language :
- English
- ISSN :
- 1526-4610
- Volume :
- 61
- Issue :
- 2
- Database :
- MEDLINE
- Journal :
- Headache
- Publication Type :
- Academic Journal
- Accession number :
- 33502769
- Full Text :
- https://doi.org/10.1111/head.14063