Migraine care in the digital era: social listening insights and neurologists' perspectives from Türkiye

Abstract

Objective To explore migraine-related concerns expressed in user-generated digital entries from a Turkish online health platform and contextualize them through neurologists' expert perspectives. Background: Digital platforms may shape symptom interpretation, treatment expectations, and communication; however, social-listening findings require cautious interpretation given platform-related and methodological limitations.Methods This exploratory study combined secondary interpretation of a pre-existing proprietary Kimola social-listening report with a survey of 10 neurologists with headache expertise. The report included analytical outputs from 2,500 migraine-related user-generated entries posted on Doktorsitesi.com between 2007 and 2023. Because raw entries, preprocessing records, and coding files were unavailable to the authors, findings were interpreted descriptively as source-report outputs. Neurologist responses were summarized as raw counts and narratively contextualized with entry-derived themes, without formal mixed-methods integration.Results According to the source report, entries were categorized into four migraine-journey stages: pre-treatment, treatment phase, disease experience, and post-treatment. These stages reflected symptom interpretation and diagnostic uncertainty, treatment effectiveness and safety concerns, broader disease burden, and discontinuation or interest in non-oral, procedural, or complementary options after treatment. In the survey, 7 of 10 neurologists agreed or strongly agreed that many people with migraine use social media for migraine-related information, and 9 of 10 agreed or strongly agreed that misinformation complicates physician-patient communication.Conclusions Among digitally engaged platform users, migraine-related entries revealed unmet information needs and treatment-related concerns. Neurologists highlighted the need for expert-led, evidence-based digital education. Although exploratory and not statistically generalizable, these findings may inform communication and digital education strategies in migraine care.