More Than a Headache: Discussions with Migraine Providers

Migraine is a prevalent, disabling, chronic neurological condition and patients with migraine face significant challenges related to stigma that negatively impacts their quality of life. Migraine patients experience barriers to receiving adequate healthcare and face the daily repercussions of perceptions about their condition. Failures in clinical communication and understanding of migraine patient lived experience have been identified in the literature, but the personal and structural antecedents of those failures have not been specified from the perspectives of providers caring for patients with migraine. We conducted a semi-structured and freelisting interview study with providers of four main specialties including emergency medicine, primary care, general neurology, and headache specialty in order to uncover the roots of institutionalized stigma against migraine patients and create discussion about potential avenues for improvement. We were able to organize the contributors to migraine patients’ stigma experience using a modified version of the socio-ecological framework in which identified factors were stratified by level of impact relative to the patient. This analysis included professional stigmatization of headache specialists with subsequent impact on competent care delivery. Furthermore, several recommended strategies for improved care were highlighted in our discussions including improved provider education, individualized and holistic care for patients, improved continuity between clinical environments using patient-specific plans, active patient engagement, development of objective diagnostic tools, and finally utilization of primary care as a gatekeeper. Overall, our study provides the first framework for understanding the stigma experience of the patient with migraine and suggests paths for improvement in the future