An online survey of migraineurs in Germany aimed to evaluate their most pressing unmet needs, with data collected on socioeconomic background, medical care experience, acute medication use, and migraine prophylaxis use and experience.
Medical care for patients with migraine in Germany remains insufficient, despite patients with more monthly migraine days (MMDs) reporting better experiences with overall medical care, according to findings published in Scientific Reports.
The individuals who responded to the gErman migraine PatIent Survey on medical Care and prOPhylactic treatment Experience (EPISCOPE) self-identified as having migraine. Of the 29,011 who originally responded—after having been identified through an ID Migraine screener—21,504 were actually identified as patients with migraine. EPISCOPE was utilized from January through March 2019; it was an anonymous survey comprising 5 domains:
“The survey included diagnostic inquiry regarding migraine,” the authors wrote, “and further exploration regarding the patient journey from disease onset to diagnosis and utilization of medical services, medication, and nonpharmacological therapies for migraine.”
Primary results showed that 54% of EPISCOPE respondents said they currently were not consulting a physician, lack of medication overuse information was reported by 33%, and prophylactic migraine treatment was never tried by 48%. In addition, among those who reported use of prophylactic migraine treatment, 33% remained unsatisfied with the therapy, citing insufficient efficacy as their primary concern.
Smaller percentages reported they were unable to work due to migraine or retired early because of the condition, at 0.8% and 0.4%, respectively.
Data on mean MMDs showed close to half of survey respondents reported fewer than 4 MMDs (46.1%) in the 3 months leading up to the survey. Fifteen or more MMDs were reported by the fewest respondents (9.2%). In the middle were 4 to 7 MMDs reported by 29.3% and 8 to 14 MMDs reported by 15.4%. The mean was 5.7 (5.4) MMDs. Migraine onset was a mean 13.4 (9.9) years prior to the survey.
In addition, use of preventive treatment had a positive correlation with more MMDs reported, but 51% still reported no use of prophylactic migraine treatment. Top alternative/drug-free prophylactic measures were stamina and relaxation training, at 16% and 12%, respectively.
Outreach for the survey was targeted, with campaigns conducted on Facebook and Instagram and through Google Search Ads, as well as delivery of the ClinLife migraine newsletter. Most respondents were female (85.5%) and employed (71.4%); the mean (SD) age was 29.2 (10.01) years.
Seventy-four percent of diagnoses were handed down by physicians, and of these, most were neurologists (52%)—although these specialists, together with pain specialists and orthopedists, typically first saw patients more than 5 years after the condition was diagnosed. General practitioners saw the highest proportion of patients with migraine within 2 years of diagnosis.
Just 26% of patients reported receiving treatment of any kind when responding to the survey, and among those reporting 15 or more MMDs, still fewer than half (43%) reported visiting physicians. The most common reason for not seeking medical advice was their migraine was under control with acute medication, while the reason least cited was not satisfied with prophylactic treatment.
Few participants reported having no knowledge of medication overuse (12%). More than two-thirds (69%) stated they knew about its risk and when medication overuse can occur.
The EPISCOPE survey is the largest to date of patients with migraine in Germany, and the authors’ findings expand on previous research through survey participation independent of MMDs and prophylactic medication use. In addition, they investigated different aspects of the patient journey, including that deficiencies in current migraine care are a principal barrier to adequate medical care for the condition—even with severely affected patients reporting better knowledge of migraine and greater medication use.
Future investigative routes should include acute medication use, both prescription and over the counter, and how to improve preventive care and patient education.
Groth M, Katsarava Z, Ehrlich M. Results of the gErman migraine PatIent Survey on medical Care and prOPhylactic treatment Experience (EPISCOPE). Sci Rep. Published online March 17, 2022. doi:10.1038/s41598-022-08716-w