What do patients with cerebral aneurysms know about their condition?

OBJECTIVE During diagnosis and treatment, patients with cerebral aneurysms receive complex medical information. To study what patients know about their condition, we compared patients' knowledge about their aneurysm-related medical history with information in the medical record. METHODS Neurosurgery clinic outpatients with cerebral aneurysms were interviewed about their history of subarachnoid hemorrhage, number of aneurysms, aneurysm treatments, and treatment outcomes. Corresponding data were abstracted from the medical record by study personnel. We used kappa scores to assess the agreement between patient responses and the medical record. RESULTS The 178 study patients were predominantly women (71%), with a mean age of 54.4 years. The medical record showed that 56% of patients currently harbored an unsecured aneurysm, 53% had experienced a subarachnoid hemorrhage, 29% had multiple aneurysms, and 68% had undergone previous surgical or endovascular aneurysm treatment. Patient responses showed that, of the 100 patients with unsecured aneurysms, 33% were not aware that they harbored an unsecured aneurysm. Ninety percent of all patients knew whether they had experienced a subarachnoid hemorrhage (kappa = 0.81, near perfect agreement), 78% knew how many aneurysms they harbored (kappa = 0.57, moderate agreement), and 92% understood whether they had undergone previous aneurysm treatment (kappa = 0.82, near perfect agreement). CONCLUSION Most patients with cerebral aneurysms had an accurate understanding of many aspects of their aneurysm-related medical history. Of concern, patients were most often incorrect about the presence of an unsecured aneurysm, the issue most relevant to treatment decision-making and to their future risk of subarachnoid hemorrhage, stroke, and premature death.