Migraine stigma and general knowledge of migraine: A cross-sectional European survey

Abstract

Stigma scale for chronic illnesses 8-item; General population knowledge; Severe migraine

Escala de estigma para enfermedades crónicas de 8 ítems; Conocimiento de la población general; Migraña severa

Escala d'estigma per a malalties cròniques de 8 ítems; Coneixement de la població general; Migranya severa

Background The stigma associated with migraine impacts patients’ quality of life, mental health and their willingness to seek treatment. The present study aimed to gain insights into the stigma from the patient's perspective and to assess migraine knowledge among people without the condition. Methods This cross-sectional descriptive, quantitative study used two surveys (survey 1, open April 2023 to July 2023; survey 2, September 2023 to November 2023). The surveys were distributed to local patient organisations across 26 European countries and nine countries in South and North America, Asia and Oceania. Results Survey 1 received 3712 answers. Most respondents were women (3444; 92.8%), 45–54 years (1090; 29.4%) and experienced severe migraine (2047; 55.1%). Most participants viewed their migraine as disabling (2655; 71.5%) and felt that medical professionals only partially understood (2135; 57.5%). Survey 2 gathered 774 responses, with most of the participants being partners (202; 26.1%), friends (196; 25.3%) or other relatives (110; 14.2%) of individuals with migraine. The significant majority of respondents demonstrated a high understanding of migraine (573; 74.0%) and predominantly recognised migraine as disabling and impacting personal and professional life. Responders felt a high degree of stigma, more from work colleagues and medical professionals than from their social network. Conclusions The disabling nature of migraine, combined with the associated stigma, aggravates the challenges faced by patients. There is an urgent need for improved medical education, public awareness campaigns and possible revisions in medical terminology to better support people with migraine and mitigate the stigma they encounter. Importantly, medical professionals need to re-double efforts to check their behaviour to avoid adding to the burden of our patients.