RESEARCH SUBMISSION

“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

Emmanuelle A. D. Schindler MD, PhD

Corresponding Author

Emmanuelle A. D. Schindler MD, PhD

Headache Center of Excellence, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Neurology Service, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Department of Neurology, Yale School of Medicine, New Haven, CT, USA

Correspondence

Emmanuelle A. D. Schindler, Veterans Affairs Connecticut Healthcare System, Neurology Service, MS 127, 950 Campbell Avenue, West Haven, CT 06516, USA.

Email: [email protected]

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Vanessa Cooper MD

Vanessa Cooper MD

Neurology Service, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Department of Neurology, Yale School of Medicine, New Haven, CT, USA

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Douglas B. Quine PhD

Douglas B. Quine PhD

Headache Center of Excellence, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Pain, Research, Informatics, Medical comorbidities, and Education (PRIME) Center, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

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Brenda T. Fenton PhD, MSc

Brenda T. Fenton PhD, MSc

Headache Center of Excellence, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Pain, Research, Informatics, Medical comorbidities, and Education (PRIME) Center, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

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Douglas A. Wright DC

Douglas A. Wright DC

Clusterbusters, Incorporated, Lombard, IL, USA

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Marsha J. Weil OT

Marsha J. Weil OT

Clusterbusters, Incorporated, Lombard, IL, USA

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Jason J. Sico MD, MHS

Jason J. Sico MD, MHS

Headache Center of Excellence, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Neurology Service, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

Department of Neurology, Yale School of Medicine, New Haven, CT, USA

Pain, Research, Informatics, Medical comorbidities, and Education (PRIME) Center, Veterans Affairs Connecticut Healthcare System, West Haven, CT, USA

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First published: 27 January 2021
Citations: 8

Abstract

Objective

To characterize patient-reported ideas and concerns about cluster headache, treatment options, and management strategies.

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.

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.

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.

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.

CONFLICT OF INTEREST

E. Schindler has received research grant funding from Clusterbusters, Inc. for her prior work with this organization. She also receives funding from the Department of Veterans Affairs. V. Cooper has no conflicts of interest. D. Quine has no conflicts of interest. B. Fenton has no conflicts of interest. D. Wright was a board member of Clusterbusters, Inc. at the time of survey execution, but did not receive remuneration for his role. M. Weil was a board member of Clusterbusters, Inc. at the time of survey execution, but did not receive remuneration for her role. J. Sico receives grant support from the Department of Veterans Affairs.