The rescue therapy in epilepsy project Part 2: Insights from people with epilepsy and families on expert-derived preferred practices

• Published in: Epilepsy & behavior 2021-12, Vol.125, p.108444-108444, Article 108444
• Main Authors: Shafer, Patricia O., Santilli, Nancy, Buchhalter, Jeffrey, Gilchrist, Brian, Kukla, Alison, French, Jaqueline A., Hirsch, Lawrence J.
• Format: Article
• Language: English
• Subjects: Epilepsy; Patient education; Patient perspective; Rescue medicines; Rescue therapy; Seizure action plan; Seizure clusters; Seizures
• ISSN: 1525-5050; 1525-5069
• DOI: 10.1016/j.yebeh.2021.108444

•PWE and families agree with 79% of preferred practices for rescue therapies.•PWE have different opinions than expert panel about when to use rescue therapies.•Seizure triggers and health status are important to PWE when using rescue therapies.•Shared understanding of rescue therapies may impact learning needs and outcomes. The number and type of therapies available to treat seizure clusters (SCs) or periods of increased seizure activity have risen in recent years. Gaps still exist on defining SCs, when to use them, and educating patients and families. The Epilepsy Foundation developed and published expert-derived consensus on preferred practices for rescue therapies (RTs), 79% of which were agreed upon by a larger group of healthcare professionals (HCPs). This paper describes insights from people with epilepsy (PWE) and families/caregivers (FCGs) on these practices to assess similarities and trends between PWE, FCGs, an expert panel, and HCPs. Online survey including expert-derived preferred practices for RT was completed by a convenience sample of 176 PWE/FCGs. Respondents rated agreement with each preferred practice using a 0–8 point Likert scale. Results were examined by relationship to epilepsy, prior use of RTs, and comparison to the expert panel and larger group of HCPs. 41.5% of respondents were PWE and 54.6% were FCGs; 70% represented PWE age 18 and over or those who cared for adults with epilepsy. Levels of agreement were similar to those of HCPs – consensus was obtained on 79% of preferred practices. Differences were noted on which items achieved consensus and strength of consensus for some items. Differences between PWE and FCG, and between those who had and had not previously used a RT were found. A proposed definition of SCs did not reach consensus, but there was strong consensus for individualized seizure action plans and more RT education.