title: Diagnosis, prevalence estimation and burden measurement in population surveys of headache: presenting the HARDSHIP questionnaire.
abstract: 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 (e.g., on additional comorbidities) added, according to the purpose of the study and resources (especially time) available.
authors.affiliation: Department of Neuroscience, Norwegian University of Science and Technology, Trondheim, Norway. t.steiner@imperial.ac.uk.
authors.forename: Timothy J
authors.initials: TJ
authors.lastname: Steiner
authors.forename: Gopalakrishna
authors.initials: G
authors.lastname: Gururaj
authors.forename: Colette
authors.initials: C
authors.lastname: Andrée
authors.forename: Zaza
authors.initials: Z
authors.lastname: Katsarava
authors.forename: Ilya
authors.initials: I
authors.lastname: Ayzenberg
authors.forename: Sheng-Yuan
authors.initials: SY
authors.lastname: Yu
authors.forename: Mohammed
authors.initials: M
authors.lastname: Al Jumah
authors.forename: Redda
authors.initials: R
authors.lastname: Tekle-Haimanot
authors.forename: Gretchen L
authors.initials: GL
authors.lastname: Birbeck
authors.forename: Arif
authors.initials: A
authors.lastname: Herekar
authors.forename: Mattias
authors.initials: M
authors.lastname: Linde
authors.forename: Edouard
authors.initials: E
authors.lastname: Mbewe
authors.forename: Kedar
authors.initials: K
authors.lastname: Manandhar
authors.forename: Ajay
authors.initials: A
authors.lastname: Risal
authors.forename: Rigmor
authors.initials: R
authors.lastname: Jensen
authors.forename: Luiz Paulo
authors.initials: LP
authors.lastname: Queiroz
authors.forename: Ann I
authors.initials: AI
authors.lastname: Scher
authors.forename: Shuu-Jiun
authors.initials: SJ
authors.lastname: Wang
authors.forename: Lars Jacob
authors.initials: LJ
authors.lastname: Stovner
mesh_terms: D000328:Adult; D002648:Child; D002681:China / Q000453:epidemiology; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005002:Ethiopia / Q000453:epidemiology; D005062:European Union; D005260:Female; D006261:Headache / Q000175:diagnosis* / Q000453:epidemiology* / Q000523:psychology; D006306:Health Surveys / Q000379:methods / Q000592:standards; D006801:Humans; D007194:India / Q000453:epidemiology; D009390:Nepal / Q000453:epidemiology; D010154:Pakistan / Q000453:epidemiology; D011159:Population Surveillance / Q000379:methods; D015995:Prevalence; D011788:Quality of Life; D012426:Russia / Q000453:epidemiology; D012529:Saudi Arabia / Q000453:epidemiology; D011795:Surveys and Questionnaires / Q000592:standards*