Background: Evidence is limited regarding the comorbidity burden of patients with cluster headache (CH). We aimed to characterize comorbid conditions in a cohort of CH patients diagnosed by headache experts, using electronic health record information from the Partners Research Patient Data Registry (RPDR).
Methods: We identified and reviewed the charts of unique patients diagnosed by headache specialists over an 11-year period, and a set of matched controls. Patients were categorized as having Definite, Unconfirmed or no CH. We calculated the prevalence of and tested for statistically significant differences of selected comorbid conditions in these populations.
Results: An RPDR query identified 170 patients with a free text or ICD diagnosis of cluster headache. 15 records belonging to Partners employees were excluded. 75 patients met diagnostic criteria for CH (Definite CH). 22 had headaches with some features of CH but the diagnosis was uncertain (Unconfirmed CH). In 58 the diagnosis was determined to be inaccurate due to data entry errors. Patients with Definite CH had an average age of 43.4 years; 80% were male. The average time from CH onset to diagnosis was 12.7 years (range 1-51). The average number of yearly emergency department and outpatient visits for the group of Definite CH patients was 4.5 and 25.4, respectively, compared with 1.1 and 6.9 in controls. Of the 55 examined conditions, four were statistically significantly less common in patients with definite CH compared with controls (diabetes, musculoskeletal/orthopaedic problems, "other gastrointestinal diagnoses" and skin conditions) and four were statistically significantly more common (smoking, depression, dental disorders and deviated septum).
Conclusions: In this large population-based study, we identified a surprisingly small number of patients who met strict diagnostic criteria for CH. In these patients, however, we identified a distinct pattern of selected comorbidities. The pattern is somewhat but not entirely consistent with that of the "classic" CH patient depicted in the medical literature. CH patients are frequently diagnosed with sinus or dental problems. Many experience substantial delay in receiving a diagnosis. These things may in part explain the high frequency of medical visits in this population. It is difficult to distinguish conditions that are genuinely comorbid with CH from those that reflect misdiagnoses or medical scrutiny of patients in frequent contact with the healthcare system.
Keywords: Cluster headache; Comorbidity; Diagnostic delay; Healthcare utilization; Misdiagnosis.