Cluster Headache: Economic and Psychological Burdens of Diagnostic Errors and Delays

Cluster headache (CH) is a devastating primary headache disorder and is widely recognized as one of the most severe pain conditions encountered in clinical practice. The goal of this narrative review is to examine the challenges contributing to the delayed recognition and diagnosis of CH. We divided the cost of CH into direct and indirect costs. We found that direct costs include healthcare services, such as emergency department, primary care, and specialist visits, diagnostic tests, pharmacy services, oxygen therapy, and neuromodulation devices, and increased healthcare utilization, including more frequent emergency department visits. Indirect costs include such invisible burdens of the disease as pain, demoralization, and suicide risk. Despite the cyclic nature of the disease, CH is a chronically disabling disease that impacts patients even during periods of remission. Misdiagnosis is common, particularly among female patients. Diagnostic delays often impede initiation of optimal treatment. Reducing diagnostic delays will require educating clinicians who may encounter patients suffering from CH, including those in primary care, emergency medicine, pain management, neurology, otolaryngology, and dentistry. To address misdiagnosis, it is recommended to incorporate the Erwin Test for Cluster Headache (ETCH) into clinical practice and healthcare professional education to support earlier recognition and improve diagnostic accuracy. Collaboration among healthcare professionals, patient advocacy organizations, and patients themselves, together with improved diagnostic tools and expanded access to care, may increase awareness, reduce diagnostic delays, and improve patient outcomes.