Neurologist–patient communication about epilepsy in the United States, Spain, and Germany

Background Effective communication between patients and their health care providers is recognized as critically important to improve the quality of health services for individuals with epilepsy. We aimed to describe in-office neurologist–patient conversations about epilepsy and focus on disease identification, shared decision-making, and care planning. Methods Transcripts and audio recordings of conversations between patients and neurologists in the United States, Spain, and Germany were analyzed linguistically in the topic areas of epilepsy identification and diagnosis, disease education, treatments, and care planning. Analyses included word-level assessments, topic switching, strategies of information elicitation, identification of topics discussed, quantification of questions asked, and assessment of types of questions asked. Results Conversations of 17 neurologists in the United States, 12 in Spain, and 6 in Germany, with 50, 20, and 16 patients, respectively, were analyzed. Neurologists tended to utilize an event-based, patient-friendly vocabulary to refer to seizures, and in the United States, they avoided using the term “epilepsy.” Regardless of who initiated the treatment discussion, the neurologists in all 3 countries were unilaterally responsible for the treatment decision and choice of medication. When describing a new medication, neurologists most often discussed potential side effects but did not review potential benefits. Neurologists rarely defined seizure control and did not ask patients what seizure control meant to them. Conclusions We identified opportunities related to vocabulary, decision-making, and treatment goal setting that could be targeted to improve neurologist–patient communication about epilepsy, and ultimately, the overall treatment experience and outcomes for patients.