This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of “taking out” brain tissue whereas RNS patients highlighted the reversibility of “putting in” a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians.

中文翻译：

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切除与反应性神经刺激治疗耐药性癫痫的患者经历

本研究探讨了接受两种不同类型手术干预的癫痫患者的疾病经历和决策：切除与植入 NeuroPace 响应神经刺激系统 (RNS)。我们从一家学术医疗机构的四级癫痫中心招募了 31 名参与者。我们观察了 22 例患者就诊（切除：n = 10，RNS：n = 12）并进行了 18 例深入的患者访谈（切除：n = 7，RNS：n = 11）；大多数访问和访谈都包括患者护理人员。使用应用的人种学方法，我们确定了切除与 RNS 患者经历的三个主要主题。首先，对于这两个队列的患者来说，治疗过程都是迂回的，违背了标准化的一线、二线和三线护理模式。其次，在概念化风险时，切除患者强调“取出”脑组织的永久性损失，而 RNS 患者则强调“放入”装置的可逆性。最后，在考虑获益时，切除患者认为手术具有潜在的治愈性，而 RNS 患者则认为植入主要是姑息治疗，慢性皮质电图可能具有额外的诊断益处。深入了解患者和护理人员的观点可能有助于确定临床医生咨询和探索的关键主题。