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Cited by 204Migraine and Headache StudiesMusculoskeletal pain and rehabilitationSurvey Methodology and Nonresponse

Diagnosis, prevalence estimation and burden measurement in population surveys of headache: presenting the HARDSHIP questionnaire

Open access
Steiner, Timothy J, Gururaj, Gopalakrishna, Andrée, Colette, Katsarava, Zaza, Ayzenberg, Ilya, Yu, Sheng-Yuan, Al Jumah, Mohammed, Tekle-Haimanot, Redda +11 more·2014·The Journal of Headache and Pain
DOI 10.1186/1129-2377-15-3PMC PMC3906903
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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.

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  • The diagnostic questions were imported from the HARDSHIP questionnaire developed by LTB for population-based surveys.

    “The diagnostic questions were imported, with linguistic adaptations as necessary, from the burden-of-headache questionnaire developed by LTB for population-based surveys (the HARDSHIP questionnaire [23]).”

    From The impact of headache in Europe: principal results of the Eurolight project (2014) · cites this paper as [23]

  • Diagnoses were made by a computerized algorithm developed by LTB specifically for this questionnaire.

    “Diagnoses were made by computerized algorithm also developed by LTB specifically for this questionnaire [23].”

    From The impact of headache in Europe: principal results of the Eurolight project (2014) · cites this paper as [23]

  • The questionnaire was derived from the HARDSHIP questionnaire, already used by LTB in many different countries, cultures and translations.

    “Not only that, but the questionnaire was derived from the HARDSHIP questionnaire, already used by LTB in many different countries, cultures and translations [23].”

    From The impact of headache in Europe: principal results of the Eurolight project (2014) · cites this paper as [23]

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Authors
Steiner, T. J., Gururaj, G., Andrée, C., Katsarava, Z., Ayzenberg, I., Yu, S.-Y., Al Jumah, M., Tekle-Haimanot, R., Birbeck, G. L., Herekar, A., Linde, M., Mbewe, E., Manandhar, K., Risal, A., Jensen, R., Queiroz, L. P., Scher, A. I., Wang, S.-J., & Stovner, L. J.
Affiliations
  • Norwegian University of Science and Technology (NO)
  • National Institute of Mental Health and Neurosciences (IN)
  • University of Basel (CH)
  • University of Duisburg-Essen (DE)
  • St. Josef-Hospital (DE)
  • Chinese PLA General Hospital (CN)
  • University of Rochester Medicine (US)
  • Baqai Medical University (PK)
  • Dhulikhel Hospital (NP)
  • University of Copenhagen (DK)
  • Universidade Federal de Santa Catarina (BR)
  • Taipei Veterans General Hospital (TW)
Corresponding author
Steiner, Timothy J
ORCID
Venue
The Journal of Headache and Pain
Publisher
Springer Science and Business Media LLC
Published
2014-01-08
Volume
15
Issue
1
Pages
3-3
ISSN
  • 1129-2369 (ISSN-L)
  • 1129-2377
DOI
10.1186/1129-2377-15-3
PMC
PMC3906903
OpenAlex
W2103820603
Cited by
204
References
34
Citations by year
2026: 12 · 2025: 15 · 2024: 34 · 2023: 15 · 2022: 16 · 2021: 18 · 2020: 15 · 2019: 19 · 2018: 12 · 2017: 7 · 2016: 13 · 2015: 15 · 2014: 7 · 2012: 1
FWCI
10.69
Type
journal article
Language
en
Open access
Licence
Locations
  • The Journal of Headache and Pain (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • NORA - Norwegian Open Research Archives (submittedVersion, cc-by)
  • Research at the University of Copenhagen (University of Copenhagen) (submittedVersion)
Funders
World Health Organization
Topics
  • Health Sciences › Medicine › Psychiatry and Mental health › Migraine and Headache Studies
  • Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
  • Social Sciences › Sociology and Political Science › Survey Methodology and Nonresponse
Keywords
headache, HARDSHIP questionnaire, disability, social handicap, quality of life, health care utilization, ICHD-3 diagnostic criteria, cross-cultural validity, questionnaire development, prevalence estimation, obesity-related comorbidities
MeSH terms
Adult, Child, China, Cross-Sectional Studies, Ethiopia, European Union, Female, Headache, Health Surveys, Humans, India, Nepal, Pakistan, Population Surveillance, Quality of Life, Surveys and Questionnaires, Russia, Saudi Arabia, Prevalence, Cost of Illness

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