Deep Brain Stimulation for Pediatric Dystonia: Clinicians' Perspectives on the Most Pressing Ethical Challenges.
Deep Brain Stimulation for Pediatric Dystonia: Clinicians' Perspectives on the Most Pressing Ethical Challenges.
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儿童肌张力障碍的深部脑刺激：临床医生对最紧迫的伦理挑战的看法。
DOI：
10.1159/000530694
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发表时间：
2023
影响因子：
1.7
通讯作者：
Lazáro-Muñoz,Gabriel
中科院分区：
文献类型：
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作者：
Kostick-Quenet,KristinM;Kalwani,Lavina;Torgerson,LauraN;Munoz,Katrina;Sanchez,Clarissa;Storch,EricA;Blumenthal-Barby,JS;Lazáro-Muñoz,Gabriel
介绍小儿脑深部电刺激（pDBS）常用于治疗难治性原发性肌张力障碍，效果良好，更常用于继发性肌张力障碍，以改善生活质量。已经很少有系统的实证神经伦理学研究，以确定道德的挑战和潜在的解决方案，以确保负责任地使用DBS在儿科population.MethodsClinicians（n = 29）谁照顾未成年人与治疗抵抗性肌张力障碍进行了采访，他们的观点上最紧迫的伦理问题在pDBS.ResultsUsing主题内容分析，探讨突出的主题，临床医生确定了四个紧迫的问题：（1）pDBS风险和获益的不确定性（22/29; 72%）对知情决策构成挑战;（2）在道德上引导决策角色（15/29; 52%），包括如何最好地整合不同利益相关者的观点（3）信息稀缺对知情同意和决策质量的影响（15/29; 52%）在患者和护理人员对治疗的期望的背景下;（4）狭窄的监管状态和访问（7/29; 24%），如缺乏FDA批准的适应症，这有助于决策-使不确定性和责任，并可能限制访问DBS的患者谁可能从中受益。结论这些结果表明，临床医生主要关注的是道德在缺乏信息、监管和资金支持的情况下做出困难决定的局限性。我们讨论了两个已经在进行中的解决方案，包括支持决策以解决不确定性，以及进一步的数据共享以增强临床知识和发现。
IntroductionPediatric deep brain stimulation (pDBS) is commonly used to manage treatment-resistant primary dystonias with favorable results and more frequently used for secondary dystonia to improve quality of life. There has been little systematic empirical neuroethics research to identify ethical challenges and potential solutions to ensure responsible use of DBS in pediatric populations.MethodsClinicians (n= 29) who care for minors with treatment-resistant dystonia were interviewed for their perspectives on the most pressing ethical issues in pDBS.ResultsUsing thematic content analysis to explore salient themes, clinicians identified four pressing concerns:(1) uncertainty about risks and benefits of pDBS (22/29; 72%) that poses a challenge to informed decision-making;(2) ethically navigating decision-making roles (15/29; 52%), including how best to integrate perspectives from diverse stakeholders (patient, caregiver, clinician) and how to manage surrogate decisions on behalf of pediatric patients with limited capacity to make autonomous decisions;(3) information scarcity effects on informed consent and decision quality (15/29; 52%) in the context of patient and caregivers’ expectations for treatment; and (4) narrow regulatory status and access (7/29; 24%) such as the lack of FDA-approved indications that contribute to decision-making uncertainty and liability and potentially limit access to DBS among patients who may benefit from it.ConclusionThese results suggest that clinicians are primarily concerned about ethical limitations of making difficult decisions in the absence of informational, regulatory, and financial supports. We discuss two solutions already underway, including supported decision-making to address uncertainty and further data sharing to enhance clinical knowledge and discovery.