患者、照护者和医疗保健专业人员对癫痫控制和治疗目标的看法。
Patient, caregiver, and healthcare professional perspectives on seizure control and treatment goals.
机构信息
Department of Neurology, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
Department of Neurology, The Ohio State University Medical Center, Columbus, OH, USA.
出版信息
Epilepsy Behav. 2021 Apr;117:107816. doi: 10.1016/j.yebeh.2021.107816. Epub 2021 Feb 21.
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.
目的
探讨成年癫痫患者、照护者和医疗保健专业人员（HCP）对无癫痫发作、癫痫控制、沟通和治疗目标的看法。
方法
参与者从在线 M3 小组和罕见患者之声招募，完成了自我管理的在线 STEP 调查（抓住癫痫认知的真相）。使用方差分析和卡方检验进行组间比较。
结果
400 名成年癫痫患者、201 名照护者和 258 名 HCP（112 名普通神经科医生、96 名癫痫专家、50 名护士执业医师/医师助理）完成了 STEP 调查。与 HCP（45%）相比，明显更多的患者（61%）和照护者（66%）同意无癫痫发作是一个合理的目标（P<0.05）。平均而言，患者认为每年 3.6 次发作是“得到控制”。他们的局灶性癫痫患者中，HCP 报告 47%无癫痫发作，33%“得到控制”（63%每年发作 1-12 次），20%发作未得到控制。在患者、照护者和 HCP 中，≥60%的人同意表明癫痫控制的一个决定性特征是拥有良好的生活质量。患者、照护者和 HCP 均认为，癫痫发作的情绪、心理和关系影响讨论最少（每组不到 50%的人报告讨论），但在他们认为更需要讨论的优先事项上存在分歧（患者：癫痫不明原因猝死[SUDEP]；HCP：癫痫发作的关系影响）。尽管≥80%的患者和照护者选择了多个患者生活目标作为非常重要或极其重要，但 49%的患者表示他们没有与 HCP 分享生活目标。HCP 同意患者没有告诉他们有关癫痫或他们的生活目标的所有事情（73%的 HCP）。
结论
在 STEP 调查中确定的关于无癫痫发作、癫痫控制、沟通重点和治疗目标的不同观点为通过更有效的双向沟通和患者、照护者和 HCP 之间目标的一致来改善癫痫患者的护理和结果提供了机会。
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