Objective: To examine perspectives of adult patients with epilepsy, caregivers, and healthcare professionals (HCPs) on seizure freedom, seizure control, communication, and treatment goals.
Methods: Participants were recruited from online M3 panel and by Rare Patient Voice, and completed the self-administered online STEP Survey (Seize the Truth of Epilepsy Perceptions). Group comparisons used analysis of variance and chi-square tests.
Results: The STEP Survey was completed by 400 adult patients with epilepsy, 201 caregivers, and 258 HCPs (112 general neurologists, 96 epileptologists, 50 nurse practitioners/physician assistants). Significantly more patients (61%) and caregivers (66%) than HCPs (45%) agreed that seizure freedom is always a reasonable goal (P < 0.05). On average, patients considered 3.6 seizures/year to be "in control." Of their patients with focal seizures, HCPs reported 47% were seizure-free and 33% were "in control" (63% were having 1-12 seizures/year), and 20% were with "uncontrolled" seizures. Among patients, caregivers, and HCPs, ≥60% agreed that a defining characteristic indicating seizure control was having good quality of life. Patients, caregivers, and HCPs agreed that the emotional, psychological, and relational impact of seizures were least discussed (<50% of each group reporting discussion), but disagreed in their top priority for greater discussion (patients: sudden unexplained death in epilepsy [SUDEP]; HCPs: relational impact of seizures). Although ≥80% of patients and caregivers selected multiple patient life goals as very or extremely important, 49% of patients said they do not share life goals with their HCP. HCPs agreed that patients are not telling them everything they should about their epilepsy (73% of HCPs) or their life goals (81% of HCPs).
Conclusions: Differing perspectives on seizure freedom, seizure control, communication priorities, and treatment goals that were identified in the STEP Survey provide opportunities to improve patient care and outcomes through more effective two-way communication and alignment of goals among patients with epilepsy, caregivers, and HCPs.
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