The online version of this article (doi:10.1186/1129-2377-15-3) contains supplementary material, which is available to authorized users.
TJS, GLB, RJ, ZK and LJS are the directors and trustees of Lifting The Burden. GLB, TJS and LJS served as experts in the Global Burden of Disease Survey 2010. GLB has received research funds from the US National Institutes of Health and the Dana Foundation.
TJS and LJS created the original concept and assembled the group of experts. All authors were members of the expert consensus group or engaged in developing the questionnaire in the context of population-based studies, or both. TJS drafted the manuscript. All authors reviewed the manuscript in various drafts and approved the final version.
The global burden of headache is very large, but knowledge of it is far from complete and needs still to be gathered. Published population-based studies have used variable methodology, which has influenced findings and made comparisons difficult. The Global Campaign against Headache is undertaking initiatives to improve and standardize methods in use for cross-sectional studies. One requirement is for a survey instrument with proven cross-cultural validity. This report describes the development of such an instrument. Two of the authors developed the initial version, which was used with adaptations in population-based studies in China, Ethiopia, India, Nepal, Pakistan, Russia, Saudi Arabia, Zambia and 10 countries in the European Union. The resultant evolution of this instrument was reviewed by an expert consensus group drawn from all world regions. The final output was the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire, designed for application by trained lay interviewers. HARDSHIP is a modular instrument incorporating demographic enquiry, diagnostic questions based on ICHD-3 beta criteria, and enquiries into each of the following as components of headache-attributed burden: symptom burden; health-care utilization; disability and productive time losses; impact on education, career and earnings; perception of control; interictal burden; overall individual burden; effects on relationships and family dynamics; effects on others, including household partner and children; quality of life; wellbeing; obesity as a comorbidity. HARDSHIP already has demonstrated validity and acceptability in multiple languages and cultures. Modules may be included or not, and others (eg, on additional comorbidities) added, according to the purpose of the study and resources (especially time) available.
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- Diagnosis, prevalence estimation and burden measurement in population surveys of headache: presenting the HARDSHIP questionnaire
Timothy J Steiner
Mohammed Al Jumah
Gretchen L Birbeck
Luiz Paulo Queiroz
Ann I Scher
Lars Jacob Stovner
- Springer Milan
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