Watson Glenn D R, Afra Pegah, Bartolini Luca, Graf Daniel A, Kothare Sanjeev V, McGoldrick Patricia, Thomas Bethany J, Saxena Aneeta R, Tomycz Luke D, Wolf Steven M, Yan Peter Z, Hagen Eliza C
LivaNova, Neuromodulation Unit, Houston, TX 77058, USA.
Department of Neurology, Weill-Cornell Medicine, New York, NY 10065, USA.
Epilepsy Behav. 2021 Sep 23;124:108319. doi: 10.1016/j.yebeh.2021.108319.
Patients often recognize unmet needs that can improve patient-provider experiences in disease treatment management. These needs are rarely captured and may be hard to quantify in difficult-to-treat disease states such as drug-resistant epilepsy (DRE). To further understand challenges living with and managing DRE, a team of medical anthropologists conducted ethnographic field assessments with patients to qualitatively understand their experience with DRE across the United States. In addition, healthcare provider assessments were conducted in community clinics and Comprehensive Epilepsy Centers to further uncover patient-provider treatment gaps. We identified four distinct stages of the treatment and management journey defined by patients' perceived control over their epilepsy: Gripped in the Panic Zone, Diligently Tracking to Plan, Riding a Rollercoaster in the Dark, and Reframing Priorities to Redefine Treatment Success. We found that patients sought resources to streamline communication with their care team, enhanced education on treatment options beyond medications, and long-term resources to protect against a decline in control over managing their epilepsy once drug-resistant. Likewise, treatment management optimization strategies are provided to improve current DRE standard of care with respect to identified patient-provider gaps. These include the use of digital disease management tools, standardizing neuropsychiatrists into patients' initial care team, and introducing surgical and non-pharmacological treatment options upon epilepsy and DRE diagnoses, respectively. This ethnographic study uncovers numerous patient-provider gaps, thereby presenting a conceptual framework to advance DRE treatment. Further Incentivization from professional societies and healthcare systems to support standardization of the treatment optimization strategies provided herein into clinical practice is needed.
患者通常能意识到未被满足的需求，这些需求可以改善疾病治疗管理过程中的医患体验。在诸如耐药性癫痫（DRE）等难治性疾病状态下，这些需求很少被捕捉到，而且可能难以量化。为了进一步了解患有DRE并对其进行管理所面临的挑战，一组医学人类学家对患者进行了人种志实地评估，以定性地了解他们在美国各地患DRE的经历。此外，还在社区诊所和综合癫痫中心对医疗服务提供者进行了评估，以进一步发现医患治疗差距。我们确定了治疗和管理过程的四个不同阶段，这些阶段由患者对癫痫的感知控制来定义：被困在恐慌区、认真跟踪以制定计划、在黑暗中坐过山车以及重新调整优先级以重新定义治疗成功。我们发现，患者寻求资源以简化与护理团队的沟通，加强对药物以外治疗选择的教育，以及获得长期资源，以防止在耐药后对癫痫管理的控制能力下降。同样，针对已确定的医患差距，提供了治疗管理优化策略，以改善当前的DRE护理标准。这些策略包括使用数字疾病管理工具，将神经精神科医生纳入患者的初始护理团队，以及在癫痫和DRE诊断时分别引入手术和非药物治疗选择。这项人种志研究揭示了众多医患差距，从而提出了一个推进DRE治疗的概念框架。专业协会和医疗保健系统需要进一步提供激励措施，以支持将本文提供的治疗优化策略标准化并纳入临床实践。
