Abstracts

Rationale: To investigate communication between adult patients living with epilepsy, caregivers of adults with epilepsy, and healthcare professionals (HCPs) caring for these patients. Methods: An online survey of 400 adult patients with epilepsy (generalized, partial- or focal-onset, unknown onset), 201 caregivers, and 258 HCPs (96 epileptologists, 112 general neurologists, and 50 advanced practice providers) was conducted by Kantar Health in 2019. One section of the 10-part survey focused on various aspects of communication between patients/caregivers and HCPs, including challenges, satisfaction, quality, and unmet needs. Results: Patients (mean age, 40 years; 76% women) had epilepsy for an average of 16 years and were still experiencing ~2 seizures per month. Seventeen percent of patients reported being on their first antiepileptic drug (AED), 25% had changed their AED medication once, and 58% had changed their AED medication at least twice. Among caregivers, 23% were a partner of the person with epilepsy, 25% were a parent, and 27% were a family member; 88% reported being in the examination room with patients during HCP epilepsy visits. About 60% to 70% of patients and caregivers reported being very or extremely satisfied with HCP communication, and HCPs reported being similarly satisfied with patient communication. However, survey responses revealed substantial differences (~20 percentage points) in the topics HCPs and patients discuss, including seizure severity, seizure frequency, side effects, increasing dose of current medication, implications of switching treatments, and sudden unexpected death in epilepsy (SUDEP). The survey also revealed other areas of communication divergence between patients/caregivers and HCPs. For example, 29% of patients and 37% of caregivers somewhat or strongly agreed with the statement 'I do not know the meaning of a lot of words the HCP uses' whereas 96% of HCPS somewhat or strongly agreed that 'I explain what epilepsy is in a way that patients can understand it.' Respondents appeared to be aware that patients may not be communicating important information to the HCP. About 73% of HCPs somewhat or strongly agreed that 'My patients do not tell me everything they should about their epilepsy' and only 54% somewhat or strongly agreed that 'I believe my patients report every seizure to me.' In addition, about 34% of patients somewhat or strongly agreed that 'I do not tell my HCP everything I should about my epilepsy.' Conclusions: Although the majority of patients, caregivers, and HCPs report being satisfied with communication, the dialogue may be fractured in various ways. HCPs may not be communicating as effectively as they think they are, and patients may not be reporting all relevant information to HCPs. The survey results highlight the opportunity to improve communication between patients/caregivers and HCPs with an ultimate goal of improving outcomes among adults living with epilepsy. Funding: SK Life Science, Inc.