Seminars in Pediatric Neurology最新文献_第8页

A Focused Review of Long-Stay Patients and the Ethical Imperative to Provide Inpatient Continuity 重点回顾长期住院患者和提供住院连续性的伦理要求

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101037

Jeffrey D. Edwards MD, MA, MAS

引用次数: 0

The White Coat Cape: An Ethical Analysis of Emerging Therapies to Treat Spinal Muscular Atrophy 白色斗篷：治疗脊髓性肌肉萎缩症新兴疗法的伦理分析

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101036

Jane A. Hartsock

{"title":"The White Coat Cape: An Ethical Analysis of Emerging Therapies to Treat Spinal Muscular Atrophy","authors":"Jane A. Hartsock","doi":"10.1016/j.spen.2023.101036","DOIUrl":"10.1016/j.spen.2023.101036","url":null,"abstract":"<div><p>The recent emergence of promising therapies to treat neuromuscular diseases such as spinal muscular atrophy raises important questions regarding the ethical permissibility of allowing a parent to refuse these Food and Drug Administration-approved drugs. The 3 most recent drugs targeting spinal muscular atrophy have all been approved since 2019, lack long-term data regarding potential side-effects and long-term benefits, and are costly. Indeed, onasemnogene abeparvovec-xioi (Zolgensma) has been called the most expensive drug in the world. Contemporary analyses of innovative therapies, compassionate use medications, off-label usage, and emerging therapies tend to focus on the importance of informed consent in framing the ethical dimensions of these medications. This manuscript utilizes a narrative framework of “rescue” to explore the competing perspectives of optimistic physicians and parents, who may decline the therapies finding the benefit-burden profile does not weigh in favor of their use. Ultimately, this paper concludes that such refusal should be considered ethically permissible until such time as more long-term data are available for these medications and their cost has decreased substantially.</p></div>","PeriodicalId":49284,"journal":{"name":"Seminars in Pediatric Neurology","volume":"45 ","pages":"Article 101036"},"PeriodicalIF":2.7,"publicationDate":"2023-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9292731","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

The Shifting Landscape of Death by Neurologic Criteria in Pediatrics: Current Controversies and Persistent Questions 儿科神经病学标准下死亡格局的转变：当前的争议和持续的问题

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101034

Rebecca F.P. Long , Jenny Kingsley , Sabrina F. Derrington

引用次数: 1

Decision-Making and Ethical Considerations of Tracheostomy and Chronic Mechanical Ventilation in Children With Acute Neurological Injury 儿童急性神经损伤气管造口和慢性机械通气的决策与伦理思考

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101032

Matthew L. Friedman , Andrew L. Beardsley

引用次数: 1

Exploring Ethical Dimensions of Physician Involvement in Requests for Organ Donation in Pediatric Brain Death 探讨医师参与儿童脑死亡器官捐献请求的伦理维度

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2022.101031

Brian Leland , Lucia Wocial

引用次数: 1

Ethical Considerations of Genome Sequencing for Pediatric Patients 儿科患者基因组测序的伦理思考

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101039

Michelle M Sergi , Melissa C Keinath , Jonathan Fanaroff , Kathryn E Miller

引用次数: 1

To Treat or Not to Treat: Ethics of Management of Refractory Status Myoclonus Following Pediatric Anoxic Brain Injury 治疗还是不治疗：儿童缺氧性脑损伤后顽固性肌阵挛的管理伦理

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101033

Alyson K. Baker , Jennifer L. Griffith

{"title":"To Treat or Not to Treat: Ethics of Management of Refractory Status Myoclonus Following Pediatric Anoxic Brain Injury","authors":"Alyson K. Baker , Jennifer L. Griffith","doi":"10.1016/j.spen.2023.101033","DOIUrl":"10.1016/j.spen.2023.101033","url":null,"abstract":"<div><p>The development of status myoclonus (SM) in a postcardiac arrest patient has historically been thought of as indicative of not only a poor neurologic outcome but of neurologic devastation. In many instances, this may lead clinicians to initiate conversations about withdrawal of life sustaining therapies (WLST) regardless of the time from return of spontaneous circulation (ROSC). Recent studies showing a percentage of patients may make a good recovery has called into question whether a self-fulfilling prophecy has developed where the concern for a poor neurologic outcome leads clinicians to prematurely discuss WLST. The issue is only further complicated by changing terminology, lack of neuro-axis localization, and limited data regarding association with electroencephalogram (EEG) characteristics, all of which could aid in the understanding of the severity of neurologic injury associated with SM. Here we review the initial literature reporting SM as indicative of poor neurologic outcome, the studies that call this into question, the various definitions of SM and related terms as well as data regarding association with EEG backgrounds. We propose that improved prognostication on outcomes results from combining the presence of SM with other clinical variables (eg EEG patterns, MRI findings, and clinical exam). We discuss the ethical implications of using SM as a prognostic tool and its impact on decisions about life-sustaining care in children following cardiac arrest. We advocate for prognostication efforts to be delayed for at least 72 hours following ROSC and thus to treat SM in those early hours and days.</p></div>","PeriodicalId":49284,"journal":{"name":"Seminars in Pediatric Neurology","volume":"45 ","pages":"Article 101033"},"PeriodicalIF":2.7,"publicationDate":"2023-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9292732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Solid Organ Transplantation for Children With Neurodevelopmental Disabilities—Ethical Considerations and a Call for Clarity 神经发育障碍儿童的实体器官移植——伦理思考与澄清呼吁

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2023-04-01 DOI: 10.1016/j.spen.2023.101035

Kyla M. Tolliver MD , John J. Parent MD , Michael J. Hobson MD

引用次数: 0

Rehabilitation for Pediatric Stroke in Low and Middle Income Countries: A Focused Review 中低收入国家儿童脑卒中康复:重点综述

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2022-12-01 DOI: 10.1016/j.spen.2022.101000

Anastasia Raquel Martinez OTD, OTR , Melissa Turpin OTD, OTR/L, CTP , Kelly McGloon PhD, OTR/L , Patricia Coker-Bolt PhD, OTR/L, FNAP, FAOTA

{"title":"Rehabilitation for Pediatric Stroke in Low and Middle Income Countries: A Focused Review","authors":"Anastasia Raquel Martinez OTD, OTR , Melissa Turpin OTD, OTR/L, CTP , Kelly McGloon PhD, OTR/L , Patricia Coker-Bolt PhD, OTR/L, FNAP, FAOTA","doi":"10.1016/j.spen.2022.101000","DOIUrl":"10.1016/j.spen.2022.101000","url":null,"abstract":"<div><p>Rehabilitation for pediatric stroke survivors can maximize a child's potential through each developmental stage of life. Timely diagnosis and referral to a rehabilitation specialist may harness opportunities to maximize brain plasticity, to help children adapt and learn, and to participate in and enjoy daily life to their capability. The aim of this focused review is to explore current rehabilitation models and evidence-based interventions for pediatric stroke survivors in Low- and Middle- Income Countries (LMICs) and to provide recommendations for future research and focused areas of improvement.There are several published pediatric stroke guidelines from the American Heart Association (AHA), Canada, Australia, and the United Kingdom (UK) which provide specific recommendations for rehabilitation, although the suggested intervention and services vary. There are no current guidelines developed in or contextually adapted for LMICs, although the current pediatric stroke guidelines emphasize the need to develop interventions that fit the cultural and environmental contexts. The World Health Organization (WHO) Rehabilitation 2030 initiative acknowledges profound unmet rehabilitation needs around the world, especially in LMICs. According to the WHO, LMICs have less than ten skilled rehabilitation professionals per one million people. Enhancing the understanding of rehabilitation services in LMICs could lead to nationally supported workforce education initiatives targeted to expand the number of locally trained therapy providers. This could improve access to and delivery of quality rehabilitation interventions to pediatric stroke survivors in these settings.</p></div>","PeriodicalId":49284,"journal":{"name":"Seminars in Pediatric Neurology","volume":"44 ","pages":"Article 101000"},"PeriodicalIF":2.7,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10352862","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 1

Neuromotor Rehabilitation Interventions After Pediatric Stroke: A Focused Review 儿童中风后的神经运动康复干预:一项重点综述

IF 2.7 4区医学

Seminars in Pediatric Neurology Pub Date : 2022-12-01 DOI: 10.1016/j.spen.2022.100994

Emerson Hart, Elizabeth Humanitzki, Julia Schroeder, Michelle Woodbury, Patty Coker-Bolt, Cindy Dodds

{"title":"Neuromotor Rehabilitation Interventions After Pediatric Stroke: A Focused Review","authors":"Emerson Hart, Elizabeth Humanitzki, Julia Schroeder, Michelle Woodbury, Patty Coker-Bolt, Cindy Dodds","doi":"10.1016/j.spen.2022.100994","DOIUrl":"10.1016/j.spen.2022.100994","url":null,"abstract":"<div><p><span>Pediatric stroke is a condition that often results in life-long motor, cognitive, or sensory deficits for children. The purpose of this focused review is to compile the most recent literature on pediatric stroke neuromotor interventions and summarize evidence for use by rehabilitation providers and researchers. Terms including stroke, pediatric, and neuromotor were searched with appropriate MeSH terms. Information was collected regarding interventions conducted and outcome measures used for each article. Interventions and outcome measures were organized based on ICF components (Body Structure and Function, Activity, Participation, and Environmental Factors). 16 articles were included after full-text screens. From these 16 articles, a large majority of them included some form of </span>neuromodulation<span> as a part of intervention. Results identified a potentially problematic gap between domains addressed by interventions and measured by outcomes, with a need to include more expansive outcome measures in research studies. There are several areas of potential growth in pediatric stroke literature. Research studies should be precise when describing included samples. As interventions for pediatric stroke shift toward neuromodulation and other neurologic treatments, there is a need for well-defined populations, both clinically in the community as well as in research studies. There is also a need for US guidelines for rehabilitation after pediatric stroke. Overall, the trend in the literature seems to suggest that combining some form of neuromodulatory technique with existing recommended rehabilitation technique (ex: CIMT) may promote overall recovery for children after stroke, though further research is needed.</span></p></div>","PeriodicalId":49284,"journal":{"name":"Seminars in Pediatric Neurology","volume":"44 ","pages":"Article 100994"},"PeriodicalIF":2.7,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10815491","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 4