An invisible cause of disability: stigma in migraine and epilepsy

Objective Our purpose was to identify the ratio and severity of stigmatization in patients with migraine and epilepsy. We also collected demographic and clinical data to search for possible facilitators. Methods In total, 196 patients with migraine and 60 patients with epilepsy were enrolled. Neuro-QoL Stigma Scale was applied in an office setting by a neurologist in 3 different centers. Stigma scores were calculated as standardized T scores (total, enacted, and internalized). Demographics, clinical characteristics, and treatment status of the patients were also compared in terms of stigma scores. Kruskal–Wallis test or Mann–Whitney U tests were applied for comparisons. Spearman’s correlation analysis was used for the evaluation of inter-parameter correlations. Results Eighty-one percent of the patients with epilepsy and 72% of the patients with migraine reported being stigmatized. Total T scores were significantly higher in the epilepsy group (50.78 ± 9.1) than the patients with migraine (44.9 ± 7.62), also than the chronic (45.86 ± 8.76) and episodic (44.7 ± 7.27) migraine subgroups ( p < 0.05). T scores increased as the duration of disease increased; however, this correlation was significant for the epilepsy group only ( p < 0.05). Migraine group with prophylactic treatment had significantly higher scores than the migraineurs without preventive therapy ( p < 0.05). Enacted T scores were higher than internalized T scores in all analyzed groups and subgroups ( p < 0.05). Conclusion Patients with migraine and epilepsy are subjected to stigma. The ratio and intensity can change in different countries. We need to increase the awareness and search for better solutions. The standardized tests are important to compare results between studies.