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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Summary: Purpose: To study the incidence of epilepsy in a rural area of Ethiopia.Methods: A community-based study was performed in a random sample of villages with 61,686 inhabitants in a rural area of central Ethiopia. In a door-to-door survey, all inhabitants in the study area were interviewed about seizures. A standardized protocol was used. All new cases with epilepsy that had occurred since a previous study was made 3.5 years earlier were included. Fifty-three of the subjects were investigated with EEG.Results: One-hundred thirty-nine incident cases were identified, corresponding to an annual incidence of 64 in 100,000 inhabitants [95% confidence interval (CI) 44-84]. The corresponding rate for males was 72 (CI 42-102); for females, it was 57 (CI 31-84). The highest age-specific incidence occurred in the youngest age groups (0-9 years); the next highest was in the group aged 10-19 years. Generalized convulsive seizures occurred in 69%, partial seizures ~ ~~ ~~ occurred in 20%, and unclassifiable seizures occurred in 11%. Seizures occurred daily in 10% and weekly in another 14%; 33% had monthly seizures. Twenty-two percent had a family history of epilepsy. A history of head trauma was ascertained in 5.7% and was the most common possible etiologic factor identified. Thirteen percent were treated with antiepileptic drugs (AEDs). Conclusions:The incidence of epilepsy in Ethiopia is high. A high incidence in combination with a prevalence of epilepsy in the study area comparable to that in the rest of the world may be explained by a high degree of spontaneous remission of epilepsy and/or a high mortality due to epilepsy. Despite health education on epilepsy given to the community, a minority of subjects were treated with AEDs, which may reflect the inadequacies of the health services and transportation difficulties faced by the patients.

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Between 1986 and 1988 a door-to-door survey was conducted on a stable rural population of 60,820 in central Ethiopia. Trained lay health workers made a complete census and identified cases with symptoms -and signs of neurological disorders, using specially designed questionnaires which, in a previous pilot study, were found to have a sensitivity of 91% and specificity of 85%. Neurological disorders in the rural population were epilepsy, postpoliomyelitis paralysis, mental retardation, peripheral neuropathy (mainly due to leprosy), and deaf-mutism with prevalence rates (cases/100,000 population) of 520, 240, 170,150 and 130, respectively. The prevalence rates of the other less common neurological disorders were 62 for hemiparesis (15 of which were for cerebrovascular accidents), 20 for cerebral palsy, 16 for optic atrophy, 12 for perceptive deafness, 10 for tropical spastic paraparesis, 7 for Parkinson''s disease and 5 for motor neuron disease, ataxia and chorea/athetosis. Among related non-neurological conditions, blindness, locomotor disability and deafness were predominant. The significance and role of such a neuroepidemiological study in laying the strategies for the prevention of neurological disorders and rehabilitation of patients are discussed in the context of a developing country.

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