Objective: To qualitatively explore the approach of pediatric epilepsy providers when counseling regarding surgical options for epilepsy, presenting risks and benefits of surgery, overcoming resistance to surgery, and fostering shared decision making with patients and families. Methods: We conducted in-depth interviews with 11 academic clinicians (5- neurologists, 5- epileptologists, 1- neurosurgeon) from a Level 4 pediatric epilepsy center to explore how physicians communicate and pursue surgical decision-making. Results: A blended inductive-deductive analysis revealed three key themes (with subthemes) of presurgical discussions: (1) Candidate selection and initial discussion about epilepsy surgery (neurologists compared to epileptologists, the timing of the discussion, reluctant families) (2) Detailed individualized counseling about epilepsy surgery (shared decision-making [enablers and barriers] and risk-benefit analysis [balancing risks and benefits, statistical benefit estimation, discussion about SUDEP, prognostication about cognitive and behavioral outcomes, risks of surgery]) (3) Tools to improve decision-making (educational interventions for patients and families and provider- and organization-specific interventions). Significance: Presurgical discussions lack uniformity among physicians who treat epilepsy. Despite general interest in collaborative decision-making, experts raised concern about lack of exposure to communication training and clinical tools for optimizing decision-making, a high number of families who do not feel equipped to share the decision making leaving the decision-making entirely to the physician, and paucity of practical resources for individualized risk-benefit counseling. Clinical practice guidelines should be developed to reduce existing practice variations in presurgical counseling. Further consensus is needed about when and how to initiate the conversation about epilepsy surgery, essential components of the discussion, and the utility of various tools to improve the utilization of epilepsy surgery.

中文翻译：

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医师对小儿癫痫手术术前讨论和共同决策的看法

目的：定性地探讨儿科癫痫提供者在就癫痫手术选择提供咨询、介绍手术的风险和益处、克服手术阻力以及促进与患者和家属共同决策时的方法。方法：我们对来自 4 级儿科癫痫中心的 11 名学术临床医生（5 名神经科医生、5 名癫痫科医生、1 名神经外科医生）进行了深入访谈，以探讨医生如何沟通和寻求手术决策。结果：混合归纳-演绎分析揭示了术前讨论的三个关键主题（带有子主题）：（1）关于癫痫手术的候选人选择和初步讨论（神经科医生与癫痫科医生的比较、讨论的时间、不情愿的家庭）（2）详细的个性化咨询关于癫痫手术（共同决策[促成因素和障碍]和风险收益分析[平衡风险和收益、统计收益估计、关于 SUDEP 的讨论、关于认知和行为结果的预测、手术风险]）（3）改进工具决策（针对患者和家庭的教育干预以及针对提供者和组织的干预）。意义：治疗癫痫的医生之间的术前讨论缺乏一致性。尽管普遍对协作决策感兴趣，但专家们对缺乏沟通培训和优化决策的临床工具表示担忧，许多家庭觉得没有能力分享决策，将决策完全留给医生，并且缺乏用于个性化风险收益咨询的实用资源。应制定临床实践指南以减少术前咨询中现有的实践差异。关于何时以及如何开始关于癫痫手术的对话、讨论的基本组成部分以及各种工具在提高癫痫手术利用率方面的实用性，需要进一步达成共识。