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. Among the initiatives of the Global Campaign against Headache to improve and standardize methods in use for cross-sectional studies, the most important is the production of consensus-based methodological guidelines. This report describes the development of detailed principles and recommendations. For this purpose we brought together an expert consensus group to include experience and competence in headache epidemiology and/or epidemiology in general and drawn from all six WHO world regions. The recommendations presented are for anyone, of whatever background, with interests in designing, performing, understanding or assessing studies that measure or describe the burden of headache in populations. While aimed principally at researchers whose main interests are in the field of headache, they should also be useful, at least in parts, to those who are expert in public health or epidemiology and wish to extend their interest into the field of headache disorders. Most of all, these recommendations seek to encourage collaborations between specialists in headache disorders and epidemiologists. The focus is on migraine, tension-type headache and medication-overuse headache, but they are not intended to be exclusive to these. The burdens arising from secondary headaches are, in the majority of cases, more correctly attributed to the underlying disorders. Nevertheless, the principles outlined here are relevant for epidemiological studies on secondary headaches, provided that adequate definitions can be not only given but also applied in questionnaires or other survey instruments.

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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A population-based neuroepidemiological survey of 102,557 individuals in urban and rural Bangalore in Southern India was conducted to determine the prevalence and pattern of neurological disorders. The study population included subjects from urban (51,502) and rural (51,055) areas, identified through a two-stage stratified random sampling method. Trained social workers administered the screening questionnaire, which had been tested and validated in an earlier pilot study and a neurologist examined the individuals who screened positive. Adults, children (<15 years) and elderly adults (>60 years) constituted 61, 34 and 5% of the study group, respectively. There was a distinct difference in education, occupation and income levels between urban and rural areas with all these parameters being lower in the rural population. In the surveyed population, 3,206 individuals with neurological disorders were detected resulting in crude and age-adjusted prevalence rates of 3,126 and 3,355 per 100,000 population, respectively. The prevalence rate among children, middle-aged (31–40 years) and elderly adults was 2,653, 3,932 and 5,012 per 100,000 population, respectively. The prevalence of neurological disorders among women (3,617) was higher compared with men (2,657). The prevalence rate in urban and rural populations was 2,190 and 4,070/1,00,000, respectively, implying that neurological disorders were twice as frequent in rural areas as in urban areas. The prevalence rates per 100,000 population of the most frequent disorders in the descending order of frequency were: headache (1,119), epilepsy (883), febrile convulsions (330), cerebrovascular disorder (150), and mental retardation (142). This large-scale population-based survey provides data that will be crucial for developing hospital and community-based neurological services in India and other developing countries.

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