Epilepsy Treatment Complacency in Patients, Caregivers, and Health Care Professionals

Abstract

Objective: To explore the perspectives of adult patients with epilepsy, caregivers, and health care professionals (HCPs) on treatment for seizures and treatment decisions, we developed and administered the STEP Survey (Seize the Truth of Epilepsy Perceptions).

Methods: Participants were recruited from online panel M3 and by Rare Patient Voice and completed the self-administered online STEP Survey. Analysis of variance and chi-square tests were used for group comparisons.

Results: The STEP Survey was completed by 400 adult patients, 201 caregivers, and 258 HCPs. Patients estimated reporting 45% of their seizures to their HCP, whereas caregivers estimated 83% and HCPs estimated 73% were reported. The most common reason for not reporting seizures was that the seizures were not serious enough to mention (patients 57%; caregivers 66%). A minority of patients (25%) and caregivers (30%) were very or extremely likely to ask their HCP about changing antiseizure medication (ASM) in the next 12 months. The HCP was most frequently selected by patients, caregivers, and HCPs as the person who initiates discussion of changing ASMs (patients 73%/caregivers 66%/HCPs 75%) and increasing ASM dosage (patients 77%/caregivers 68%/HCPs 81%). A majority of patients (65%) and caregivers (68%) somewhat or strongly agreed that they do not change ASMs due to fear of getting worse. HCPs perceive this fear less often, stating that 50% of their patients feel afraid when a second ASM was added.

Conclusions: Improved reporting of all seizures, discussion of treatment changes, and the impact of fear on treatment decisions provide opportunities to reduce complacency and optimize patient outcomes.

Figure 1. Reasons Patients and Caregivers Did Not Report All Seizures to Health Care Professionals

Total n (patients + caregivers) = 151.

Figure 2. Likelihood of Asking Health Care Professionals About Treatment Changes in the Next 12 Months

Figure 3. Discussion of Surgeries for Epilepsy Among HCPs, Patients, and Caregivers

^ap < 0.05 vs patients. ^bp < 0.05 vs caregivers. HCP = health care professionals; NA = not applicable; RNS = responsive neurostimulation.

Figure 4. Patient, Caregiver, and HCP Perspectives on a Patient Treatment Map Telling Them to See an Epileptologist/Specialist as Soon as They Have Symptoms

HCP = health care professional. Survey question: how important is it that the following program be implemented in the future: a patient treatment map that tells patients and caregivers to see an epileptologists/specialist as soon as they have symptoms, not wait for a long time. Percentages are the sum of respondents who selected the rating on a 5-point Likert scale ranging from 1 = not at all important to 5 = extremely important.

Figure 5. Patients and Caregivers Report of Fear of Having a Seizure in Diverse Situations

Percentages are the sum of respondents who reported very or extremely afraid on a 5-point Likert scale ranging from 1 = not at all afraid to 5 = extremely afraid.