Patient-centered outcomes: a qualitative exploration of patient experience with electroencephalograms in the Emergency Department

Abstract

Seizures are fear-inducing experiences for those having them and for their friends and family members. [1][2][3] Seizures comprise an estimated 1%-2% of all Emergency Department (ED) visits per year. 4 Despite that fact that patient-centered outcomes and shared decision-making models are widely promoted in healthcare today, no research has attempted to understand the ED experience from the point of view of first-time seizure patients and their families, including their experiences of the setting and pace of the typical components of a first-time seizure evaluation, diagnosis and treatment.The current ED practice standard for uncomplicated first time generalized seizures in adults evaluates patients for toxic, metabolic, structural, cardiogenic and systemic causes.5 If no abnormalities are identified, patients are instructed to refrain from at-risk activity (e.g. driving, swimming) and told to arrange follow-up with a neurologist. Since the standard neurologic evaluation for first-time seizures includes performance of an electroencephalogram (EEG) as an outpatient, patients must undergo an EEG after ED discharge. 5,6 Research has demonstrated the importance of performing early EEGs among first-time seizure patients for timely identification of epilepsy, as rapid diagnosis and immediate initiation of antiepileptic drug (AED) therapy after an epileptic seizure significantly reduces seizure risk in the short term by about 35%. 5,7 However, the barriers to appropriate outpatient follow-up and the important patient and family centered outcomes related to first time seizures in adults are poorly understood.In this paper, we utilize the concept of patient-centered outcomes to consider the patients' and families' experiences when deriving treatment options for first-time seizure patients. EEGs in the Emergency DepartmentThere has been virtually no research on Emergency Patient-centered outcomes: a qualitative exploration of patient experience with electroencephalograms in the Emergency Department ABSTRACTThe primary objective of this qualitative project was to understand the experience of patients who had first-time seizures and who did, and did not, have electroencephalograms (EEGs) performed in the Emergency Department (ED) as part of their initial evaluation, so as to refine the diagnostic and therapeutic approach to these patients and transform the standard of care for first-time seizures by focusing on outcomes as defined by patient experiences and expectations. In this paper, we show that, regardless of the diagnostic and therapeutic approach patients are given in the ED, patients and caregivers trust that health care providers will perform the standard of care consistent with the current medical practice for first-time seizures. However, performing EEGs in the ED and initiating appropriate anticonvulsant therapy for those patients who are at high risk for future seizures addresses patient needs by offering patients a sense of security and control over their medical condition and expediting appropriate follow up c...