Migraine-attributed burden, impact and disability, and migraine-impacted quality of life: Expert consensus on definitions from a Delphi process

Author:

Steiner Timothy J12,Terwindt Gisela M3,Katsarava Zaza456,Pozo-Rosich Patricia78ORCID,Gantenbein Andreas R91011ORCID,Roche Sarah L12,Dell’Agnello Grazia13,Tassorelli Cristina1415ORCID

Affiliation:

1. Department of Neuromedicine and Movement Science, NTNU Norwegian University of Science and Technology, Trondheim, Norway

2. Division of Brain Sciences, Imperial College London, London, UK

3. Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands

4. Christian Hospital Unna, Unna, Germany

5. Department of Neurology, University of Duisburg-Essen, Essen, Germany

6. EVEX Medical Corporation, Tbilisi, Georgia

7. Headache Unit, Neurology Department, Vall d'Hebron University Hospital, Barcelona, Spain

8. Headache Research Group, Vall d'Hebron Research Institute, Universitat Autonoma de Barcelona, Barcelona, Spain

9. Department of Neurology, ZURZACH Care, Bad Zurzach, Switzerland

10. Neurological Practice, Neurologie am Untertor, Bülach, Switzerland

11. Department of Neurology, University Hospital Zurich, Zürich, Switzerland

12. Eli Lilly and Company, Cork, Ireland

13. Eli Lilly Italia SpA, Sesto Fiorentino, Florence, Italy

14. Department of Brain and Behavioral Sciences, University of Pavia, Pavia, Italy

15. Headache Science & Neurorehabilitation Center, IRCCS Mondino Foundation, Pavia, Italy

Abstract

Background Migraine-attributed burden, impact, disability and migraine-impacted quality of life are important concepts in clinical management, clinical and epidemiological research, and health policy, requiring clear and agreed definitions. We aimed to formulate concise and precise definitions of these concepts by expert consensus. Methods We searched the terms migraine-attributed burden, impact, disability and migraine-impacted quality of life in Embase and Medline from 1974 and 1946 respectively. We followed a Delphi process to reach consensus on definitions. Results We found widespread conflation of concepts and inconsistent terminology within publications. Following three Delphi rounds, we defined migraine-attributed burden as “the summation of all negative consequences of the disease or its diagnosis”; migraine-attributed impact as “the effect of the disease, or its diagnosis, on a specified aspect of life, health or wellbeing”; migraine-attributed disability as “physical, cognitive and mental incapacities imposed by the disease”; and migraine-impacted quality of life as “the subjective assessment by a person with the disease of their general wellbeing, position and prospects in life”. We complemented each definition with a detailed description. Conclusion These definitions and descriptions should foster consistency and encourage more appropriate use of currently available quantifying instruments and aid the future development of others.

Funder

Eli Lilly and Company

Publisher

SAGE Publications

Subject

Neurology (clinical),General Medicine

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