Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics

Results From the United States Cluster Headache Survey

Todd D. Rozen, MD, FAAN; Royce S. Fishman, BA


Headache. 2011;51(2):191-200. 

In This Article


Author RF originally conceived the United States Cluster Headache Survey, and author TDR was asked to contribute as a headache specialist. The questions were then developed and finalized by both authors with input from directors and members of the US Organization for the Understanding of Cluster Headache (OUCH), of whom all were CH sufferers themselves. The survey was tested with randomly selected episodic and chronic CH sufferers of different ages and gender who were members of OUCH prior to finalization and implementation. Previous surveys of CH patients in the literature were evaluated for their deficiencies and unaddressed key questions. The survey questions were structured to be mutually validating and amenable for cross tabulation. The survey was simultaneously promoted on the internet by US OUCH and on their respective websites, by a dedicated survey web page promotion linked to searches using the phrases "cluster headache" and "cluster headache therapies" and by search advertising promotions on other key headache therapy websites. In parallel, the survey was promoted by the American Headache Society in its monthly newsletter to member neurologists, a mailing to leading headache neurologists and clinics in the United States using the American Headache Society and the American Medical Association neurologist headache specialist lists asking physicians to suggest that their CH patients participate in the survey, and issuance of approximately 9000 emails by US OUCH and to their website users. Surveys were completed on a first come, first serve basis and were thus accumulated on a randomized basis from interested participating sufferers. The resulting survey results were not dominated by any one geographic area, one specific medical practice or one type of medical practice. Only patients who were diagnosed with CH by a neurologist were able to complete the survey. The diagnosis of CH was not validated by the authors. The total survey consisted of 187 multiple choice questions of which 84 questions dealt specifically with oxygen usage, efficacy and economics. The survey was placed on an internet website from October 12, 2008 to December 2008. Only fully completed surveys were included in the data analysis. Incomplete surveys were automatically rejected by the survey service computer. The study was approved and given exempt status by the Geisinger IRB.

Statistical Analysis

The service that programmed the survey, tabulated the results and established statistical validity was InfoSurv in Atlanta, GA, USA. The direct and cross-tabulated results were then analyzed by author TDR. When statistical analysis was warranted the Fisher's exact test or the chi-square test was used for categorical data. Statistical significance was defined as P < .05. All P values were 2-tailed. SPSS software package for Windows version 18 (Chicago, IL, USA) was used for statistical analysis.


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