Penovich Patricia E, Stern John M, Becker Danielle A, Long Lucretia, Santilli Nancy, McGuire Lynanne, Peck Eugenia Y
Minnesota Epilepsy Group (PEP), Saint Paul; Department of Neurology (JMS), University of California at Los Angeles; Penn Epilepsy Center (DAB), Hospital of the University of Pennsylvania, Philadelphia; Department of Neurology (LL), The Ohio State University Medical Center, Columbus; Human Care Systems Inc. (NS), San Francisco, CA; MedVal Scientific Information Services (LM), Princeton, NJ; and Health Division (EYP), Kantar Health, New York, NY.
Neurol Clin Pract. 2021 Oct;11(5):377-384. doi: 10.1212/CPJ.0000000000001066.
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).
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.
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.
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.
为了探究成年癫痫患者、护理人员以及医疗保健专业人员（HCPs）对于癫痫发作治疗及治疗决策的看法，我们开发并实施了STEP调查（癫痫认知真相调查）。
参与者通过在线小组M3和罕见病患者之声招募，并完成了自行填写的在线STEP调查。采用方差分析和卡方检验进行组间比较。
400名成年患者、201名护理人员和258名医疗保健专业人员完成了STEP调查。患者估计向其医疗保健专业人员报告了45%的癫痫发作，而护理人员估计报告了83%，医疗保健专业人员估计报告了73%。未报告癫痫发作的最常见原因是发作不够严重，无需提及（患者为57%；护理人员为66%）。少数患者（25%）和护理人员（30%）非常或极其有可能在未来12个月内询问其医疗保健专业人员关于更改抗癫痫药物（ASM）的问题。患者、护理人员和医疗保健专业人员最常选择医疗保健专业人员作为发起更改ASM讨论（患者73%/护理人员66%/医疗保健专业人员75%）和增加ASM剂量讨论（患者77%/护理人员68%/医疗保健专业人员81%）的人。大多数患者（65%）和护理人员（68%） somewhat或强烈同意他们因担心病情恶化而不更改ASM。医疗保健专业人员较少察觉到这种担忧，称在添加第二种ASM时，50%的患者会感到害怕。
改善所有癫痫发作的报告、治疗更改的讨论以及恐惧对治疗决策的影响，为减少自满情绪和优化患者治疗结果提供了机会。
