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2.
Neurosurg Focus ; 53(3): E6, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36052626

RESUMO

Following France's entry into World War I on August 3, 1914, Thierry de Martel (1875-1940), the French neurosurgery pioneer, served on the front line and was wounded on October 3, 1914. He was then assigned as a surgeon in temporary hospitals in Paris, where he published his first observations of cranioencephalic war wounds. In 1915, de Martel met Harvey Cushing at the American Hospital in Neuilly, where de Martel was appointed chief surgeon in 1916. In 1917, he published with the French neurologist Charles Chatelin a book (Blessures du crâne et du cerveau. Clinique et traitement) with the aim to optimize the practice of wartime brain surgery. This book, which included the results of more than 5000 soldiers with head injuries, was considered the most important ever written on war neurology at that time and was translated into English in 1918 (Wounds of the Skull and Brain; Their Clinical Forms and Medical and Surgical Treatment). In this book, de Martel detailed the fundamentals of skull injuries, classified the various craniocerebral lesions, recommended exploratory craniectomy for cranioencephalic injuries, recommended the removal of metal projectiles from the brain using a magnetic nail, and advocated for the prevention of infectious complications. Between the World Wars, de Martel undertook several developments for neurosurgery in France alongside neurologists Joseph Babinski and Clovis Vincent. Following France's entry into World War II on September 3, 1939, de Martel took over as head of the services of the American Hospital of Paris in Neuilly. He updated his work on war surgery with the new cases he personally treated. Together with Vincent, de Martel presented his new approach in "Le traitement des blessures du crâne pendant les opérations militaires" ("The treatment of skull injuries during military operations") on January 30, 1940, and published his own surgical results in April 1940 in "Plan d'un travail sur le traitement des plaies cranio-cérébrales de guerre" ("Work Plan on the Treatment of Cranio-Cerebral Wounds of War"), intended for battlefield surgeons. On June 14, 1940, the day German troops entered Paris, de Martel injected himself with a lethal dose of phenobarbital. Thierry de Martel played a central role in establishing modern neurosurgery in France. His patriotism led him to improve the management of wartime cranioencephalic injuries using his own experience acquired during World Wars I and II.


Assuntos
Traumatismos Craniocerebrais , Neurologia , Neurocirurgia , História do Século XX , Humanos , Neurologistas , Neurologia/história , Neurocirurgia/história , I Guerra Mundial , II Guerra Mundial
3.
Handb Clin Neurol ; 190: 17-31, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36055714

RESUMO

Palliative care is increasingly becoming an established part of medical care, providing the holistic assessment and management of the person at the center of care-physical, psychological, social, and spiritual. This had originally been primarily provided for people with terminal cancers but in the last 50 years, this care has extended to caring for people with issues throughout disease progression and for all diagnoses, including neurologic diseases. Palliative care in fact is now included within guidelines and standards for many neurologic diseases. Palliative care may be delivered as an approach provided by all health and social care professionals; by focused care provided within neurology; and through the involvement of specialist palliative care and neuropalliative care for more complex issues. The education of neurologists and palliative care specialists is essential to enable all to be aware of the issues faced by patients and their families and provide adequate support for patients, families, and healthcare professionals. In this way, the quality of life can be maintained as much as possible and patients are able to die with as little distress as possible, with their families and carers supported.


Assuntos
Neoplasias , Doenças do Sistema Nervoso , Humanos , Neurologistas , Cuidados Paliativos/psicologia , Qualidade de Vida
4.
Handb Clin Neurol ; 190: 73-84, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36055721

RESUMO

Can equitable Neuropalliative care (NpC) be delivered globally? This chapter surveys existing services and ground realities in different parts of the world. In many countries, universal healthcare (UHC) seems to have been a precondition for the establishment of palliative care (PC). PC has been recognized as a basic human right as a part of UHC. Quality of Death and PC surveys provide an overview of the existing situation. Currently, PC is largely focused on the needs of cancer patients and this is a legacy issue for professionals and systems. Communities however recognize suffering and do not distinguish between medical diagnoses. The development of NpC as a subspecialty of neurology allows neurologists everywhere to become primary palliative care providers for their own patients. It is also necessary to integrate neurology with existing palliative care services. There is much that can be done to improve NpC provision even within the limits that bound every jurisdiction and trial evidence is emerging to inform this practice. This chapter is a survey of the challenges and the potential.


Assuntos
Neoplasias , Neurologia , Humanos , Neurologistas , Cuidados Paliativos
5.
Handb Clin Neurol ; 190: 85-92, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36055722

RESUMO

This chapter describes several features of palliative care that we believe can assist neurologists in caring for patients with serious illness. These features include the importance of recognizing suffering, the central of total pain (including physical, emotional, spiritual, and existential aspects), structural features of palliative care such as the distinction been palliative care and hospice, and the concept of primary and specialty palliative care. Structural features of palliative care such as interdisciplinary teamwork, approaches to self-care, and a perspective on prognostic uncertainty are also considered. Throughout this chapter, the focus is on ways in which neurologists can integrate these approaches in caring for patients and their families.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Neurologistas , Dor , Cuidados Paliativos/psicologia
6.
Handb Clin Neurol ; 190: 93-104, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36055723

RESUMO

As the incidence of neurologic (particularly neurodegenerative) diseases continues to rise, so too will the palliative needs in this patient population. To appropriately care for these patients and families, neurologists and palliative care providers will need to strengthen collaboration. Palliative care providers not formally trained in neurology may feel ill-equipped to manage some of the distinct neuropalliative care needs of these patients. Here, we provide insights into the unique characteristics of patients with neurologic disease and emphasize the relevance of the palliative care skillset in this population to aid the collaboration between palliative care providers and neurologists.


Assuntos
Doenças do Sistema Nervoso , Neurologia , Humanos , Doenças do Sistema Nervoso/terapia , Neurologistas , Cuidados Paliativos
7.
Arq Neuropsiquiatr ; 80(5 Suppl 1): 88-93, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35976292

RESUMO

Stroke is the second leading cause of death worldwide and the vast majority can be attributed to modifiable risk factors, mainly behavioral and metabolic. The top six risk factors responsible for cardiovascular mortality in Brazil in 2019 were high systolic blood pressure, inadequate dietary exposure, high body mass index, high LDL cholesterol, high fasting blood glucose levels, and tobacco. We intend to discuss in this paper the evidence and recommendations in the approach of three essential risk factors for patients with a history of stroke: dyslipidemia, hypertension and diabetes.


Assuntos
Aterosclerose , Hipertensão , Acidente Vascular Cerebral , Aterosclerose/etiologia , Humanos , Hipertensão/complicações , Neurologistas , Fatores de Risco , Acidente Vascular Cerebral/etiologia
8.
Arq Neuropsiquiatr ; 80(5 Suppl 1): 1-6, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35976294

RESUMO

Training of neurologists for the near future is a challenge due to the likely advances in neuroscientific methods, which will change much of our knowledge on diagnosis and treatment of neurological diseases. OBJECTIVE: to comment on what may be more likely to be a constant in the very near future and to recommend how to prepare the neurologist for the 21st century. METHODS: through a critical review of recent articles on the teaching of Neurology, to present a personal view on the subject. RESULTS: Diagnostic methods and therapeutic resources in Neurology will be greatly improved, but the central core of teaching young neurologists will continue to be the clinical/anatomical correlation. The neurologist must be prepared to be the primary physician in the care of patients with neurological disorders, although the roles of consultant and clinical neuroscientist must also be considered. In addition to technical knowledge, the neurologist must be prepared to discuss not only distressing issues related to the specialty, such as the risks of genetic diseases for family members of their patients, the inexorable progression of some diseases and the need for palliative care, but also problems not directly related to Neurology that cause anxiety and depression in the patient or that are the main reason for the initial consultation. CONCLUSION: neurology will be an even more important area of medicine and the neurologist must be well prepared to be the primary doctor to diagnose, treat and follow the patient with neurological disorders. In addition to technical knowledge, training in doctor-patient relations should be highlighted.


Assuntos
Doenças do Sistema Nervoso , Neurologia , Ansiedade , Humanos , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/terapia , Neurologistas , Neurologia/história
9.
Arq Neuropsiquiatr ; 80(5 Suppl 1): 238-248, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-35976321

RESUMO

Idiopathic inflammatory myopathies (IIM) are a heterogenous group of treatable myopathies. Patients present mainly to the rheumatologist and neurologists, complaining of acute or subacute onset of proximal weakness. Extramuscular manifestations may occur, including involvement of the lungs, skin, and joints. Classically, the diagnosis used to be made based on the creatine kinase level increase, abnormalities in electroneuromyography and presence of inflammatory infiltrates in the muscle biopsy. Recently, the importance of autoantibodies has increased, and now they may be identified in more than half of IIM patients. The continuous clinicoseropathological improvement in IIM knowledge has changed the way we see these patients and how we classify them. In the past, only polymyositis, dermatomyositis and inclusion body myopathy were described. Currently, immune-mediated necrotizing myopathy, overlap myositis and antisynthetase syndrome have been considered the most common forms of IIM in clinical practice, increasing the spectrum of classification. Patients previously considered to have polymyositis, in fact have these other forms of seropositive IIM. In this article, we reviewed the new concepts of classification, a practical way to make the diagnosis and how to plan the treatment of patients suffering from IIM.


Assuntos
Dermatomiosite , Doenças Musculares , Miosite , Polimiosite , Autoanticorpos , Dermatomiosite/diagnóstico , Dermatomiosite/patologia , Humanos , Miosite/diagnóstico , Miosite/terapia , Neurologistas
10.
Continuum (Minneap Minn) ; 28(4): 1194-1216, 2022 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-35938662

RESUMO

PURPOSE OF REVIEW: This article reviews the most common leukodystrophies and is focused on diagnosis, clinical features, and emerging therapeutic options. RECENT FINDINGS: In the past decade, the recognition of leukodystrophies has exponentially increased, and now this class includes more than 30 distinct disorders. Classically recognized as progressive and fatal disorders affecting young children, it is now understood that leukodystrophies are associated with an increasing spectrum of neurologic trajectories and can affect all ages. Next-generation sequencing and newborn screening allow the opportunity for the recognition of presymptomatic and atypical cases. These new testing opportunities, in combination with growing numbers of natural history studies and clinical consensus guidelines, have helped improve diagnosis and clinical care. Additionally, a more granular understanding of disease outcomes informs clinical trial design and has led to several recent therapeutic advances. This review summarizes the current understanding of the clinical manifestations of disease and treatment options for the most common leukodystrophies. SUMMARY: As early testing becomes more readily available through next-generation sequencing and newborn screening, neurologists will better understand the true incidence of the leukodystrophies and be able to diagnose children within the therapeutic window. As targeted therapies are developed, it becomes increasingly imperative that this broad spectrum of disorders is recognized and diagnosed. This work summarizes key advances in the leukodystrophy field.


Assuntos
Doenças Desmielinizantes , Transtornos do Metabolismo dos Lipídeos , Doenças Neurodegenerativas , Criança , Pré-Escolar , Humanos , Incidência , Recém-Nascido , Neurologistas
11.
J Am Heart Assoc ; 11(14): e025598, 2022 07 19.
Artigo em Inglês | MEDLINE | ID: mdl-35861812

RESUMO

Background Evidence from randomized trials and updated professional society guidelines supports patent foramen ovale (PFO) closure after cryptogenic stroke in select patients. It is unclear how this has been integrated into real-world practice, so we aimed to compare practice patterns between cardiologists and neurologists. Methods and Results In March of 2021, a survey of cardiologists and neurologists who work or previously trained at the University of Pennsylvania Health System assessed practice preferences with respect to PFO closure after stroke. Clinical vignettes isolated specific variables of interest and used a 5-point Likert scale to assess the level of support for PFO closure. Stroke neurologists and interventional cardiologists were compared by Wilcoxon-Mann-Whitney tests. Secondarily, Kruskal-Wallis tests compared stroke neurologists, general neurologists, interventional cardiologists, and general cardiologists. We received 106 responses from 182 survey recipients (31/31 stroke neurologists, 38/46 interventional cardiologists, 20/30 general neurologists, and 17/77 general cardiologists). A similar proportion of stroke neurologists and interventional cardiologists favored PFO closure in a young patient with cryptogenic stroke, 88% and 87%, respectively (P=0.54). Interventionalists were more likely than stroke neurologists to support closure in the context of an alternative high-risk stroke mechanism, 14% and 0%, respectively (P=0.003). Stroke neurologists were more likely to oppose closure on the basis of older age (P=0.01). Conclusions There are key differences between how neurologists and cardiologists approach PFO closure after stroke, particularly when interpreting the stroke etiology and when considering closure beyond the scope of prior trials; this underscores the importance of collaboration between cardiologists and neurologists.


Assuntos
Forame Oval Patente , AVC Isquêmico , Cateterismo Cardíaco , Cardiologistas , Cardiologia , Forame Oval Patente/complicações , Forame Oval Patente/terapia , Humanos , AVC Isquêmico/etiologia , Neurologistas , Neurologia , Recidiva , Prevenção Secundária , Dispositivo para Oclusão Septal , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/etiologia , Acidente Vascular Cerebral/terapia , Resultado do Tratamento
13.
Artigo em Russo | MEDLINE | ID: mdl-35904295

RESUMO

OBJECTIVE: To assess the effectiveness and safety of erenumab in real-life study. MATERIAL AND METHODS: 33 patients with episodic and chronic migraine (30 females, mean age 39.2±9.2, 3 males, mean age - 49.3±7.6) received erenumab 70 mg for each 3 months. Patients achieved a 50% reduction in the number of days with headache, pain intensity, duration, the number of days of acute medication use, effect on daily activity (HIT-6), side effects, neuropsychological testing (Beck Depression scale, Spielberger-Khanin questionnaire, Hospital Depression and Anxiety Scale) were assessed. RESULTS: During the first month of therapy, a 50% decrease in headache days was observed in 48% of patients, during the second - in 53% of patients, during the third - in 51.5% of patients (p<0.001), a reduce in pain intensity, HIT-6 score, duration of migraine attack was observed (p<0.005). A decrease in situational anxiety was revealed (Spielberger-Khanin questionnaire, p=0.02), but not depression. There was a decrease in the consumption of triptans (p<0.0005) and other analgesics (p=0.0018). 1 patient noted transient constipation. CONCLUSION: The effectiveness and safety of erenumab in the outpatient practice is shown.


Assuntos
Anticorpos Monoclonais Humanizados , Antagonistas do Receptor do Peptídeo Relacionado ao Gene de Calcitonina , Transtornos de Enxaqueca , Adulto , Anticorpos Monoclonais Humanizados/uso terapêutico , Antagonistas do Receptor do Peptídeo Relacionado ao Gene de Calcitonina/uso terapêutico , Método Duplo-Cego , Feminino , Cefaleia/induzido quimicamente , Cefaleia/tratamento farmacológico , Humanos , Masculino , Pessoa de Meia-Idade , Transtornos de Enxaqueca/tratamento farmacológico , Neurologistas
14.
Neurol India ; 70(3): 845-848, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35864607

RESUMO

Vulnerable moments, panic, and uncertainties are the hallmarks of pandemic outbreaks. Medicolegal challenges add further injury to the public health chaos. Although containing the pandemic is of prime concern, medicolegal and ethical uncertainties further complicate ideal standards of medical care. Constraints in the provision of medical care, resource limitations, infectivity risks, burgeoning costs, and pandemic control laws, create extremely precarious medicolegal situations. Ethics and medical negligence laws may, at times, be trampled upon by the overwhelming urgencies of the pandemic. Hence, we attempt to review basic ethical and medicolegal principles that are put to test by pandemic urgencies. We aim to study these vulnerable medicolegal moments in neurosurgeons'/neurologists' clinical and research practices during the COVID-19 times from our own practice and contemporary literature on COVID practices, medicolegal sciences, and pandemic healthcare directives. We also review supportive measures and safeguards to brace these vulnerable moments effectively. We compile medicolegally sound and ideal practice parameters, including the basic principles for a restructured informed surgical consent ensuring a medicolegally and ethically sound practice. Several ethical and medicolegal exigencies are part of medical practice during a pandemic. Special care should be taken to avoid violations of medicolegal and ethical proprieties during the urgencies of medical care and research. Restructuring of contracts like the informed consent would also count as an ideal practice modification in a pandemic.


Assuntos
Bioética , COVID-19 , Neurologistas , Neurocirurgiões , Humanos , Consentimento Livre e Esclarecido , Imperícia , Pandemias/prevenção & controle
15.
Semin Pediatr Neurol ; 42: 100957, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35868732

RESUMO

Fetal and neonatal neurology is increasingly recognized as a subspecialty within child neurology and fellowship training programs are emerging. Most child neurologists have not received formal training in the interpretation of fetal data and the practice of fetal neurology consultation. However, they can be valuable members of the fetal care team and bring important perspective to the diagnosis of fetal neurologic conditions. With a systematic approach and a planned format for counseling, child neurologists without formal training in fetal consultations can apply their postnatal neurology expertise to the prenatal neurology patient. In this article we offer a brief practical guide to assist child neurologists in their approach to and practice of fetal neurology consultation.


Assuntos
Doenças Fetais , Doenças do Sistema Nervoso , Neurologia , Feminino , Humanos , Recém-Nascido , Neurologistas , Encaminhamento e Consulta
16.
Semin Pediatr Neurol ; 42: 100974, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35868724

RESUMO

Despite advances in medical care and improved survival of extremely preterm infants, rates of neurodevelopmental impairment remain high. Outcomes are significantly improved with early intervention, but infants must be appropriately identified to facilitate services. Neuroimaging provides important information regarding neurodevelopmental outcomes but prognosticating and communicating risk remains challenging. Standardized neonatal neurodevelopmental assessments provide supplemental information to aid in the identification of high-risk infants and counseling for their families.


Assuntos
Lesões Encefálicas , Neurologistas , Humanos , Lactente , Lactente Extremamente Prematuro/psicologia , Recém-Nascido , Triagem Neonatal , Neuroimagem
17.
Semin Neurol ; 42(2): 136-148, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35675821

RESUMO

Social networks are the persons surrounding a patient who provide support, circulate information, and influence health behaviors. For patients seen by neurologists, social networks are one of the most proximate social determinants of health that are actually accessible to clinicians, compared with wider social forces such as structural inequalities. We can measure social networks and related phenomena of social connection using a growing set of scalable and quantitative tools increasing familiarity with social network effects and mechanisms. This scientific approach is built on decades of neurobiological and psychological research highlighting the impact of the social environment on physical and mental well-being, nervous system structure, and neuro-recovery. Here, we review the biology and psychology of social networks, assessment methods including novel social sensors, and the design of network interventions and social therapeutics.


Assuntos
Comportamentos Relacionados com a Saúde , Rede Social , Humanos , Neurologistas
18.
Mult Scler Relat Disord ; 65: 103960, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35763914

RESUMO

INTRODUCTION: The ongoing global COVID-19 pandemic has dramatically impacted our lives. We conducted this systematic review to investigate the safety of the COVID-19 vaccines in NMOSD patients. METHODS: We systematically searched PubMed, Scopus, Web of Science, and Embase from the beginning of the COVID-19 vaccination to March 1, 2022. Except for the letters, posters, and reviews, we included all related articles to answer two main questions. Our first question examined the occurrence of NMOSD onset as an adverse effect of the COVID-19 vaccine. Our second question investigated the safety of the COVID-19 vaccines in NMOSD patients. RESULTS: Out of 262 records, nine studies, including five studies for the first question and four studies for the second question, met the inclusion criteria. Out of the six patients with NMOSD onset after COVID-19 vaccination, five (83.3%) were female. The median time to NMOSD onset was 6.5 days, and the frequency of the COVID-19 vaccine type was identical in all patients. The most common presentation was longitudinally extensive transverse myelitis, significantly improved by pulse methylprednisolone with or without plasma exchange. The maintenance therapy was described only in three patients: rituximab (n=2) and azathioprine (n=1). Regarding the second question, out of 67 patients, 77.61% were female, with a mean age of 54.75 years old, a mean EDSS of 2.83, and a mean disease duration of 9.5 years. 77% reported at least one preexisting comorbidity. 88.05% were under treatment, most of which were rituximab and azathioprine. 98.50% received two doses of the COVID-19 vaccine. mRNA vaccines were the most commonly used vaccine(86.56%), which were well tolerated. No significant adverse event was reported, and local pain was the most frequently reported. 4.67% of the patients experienced a clinical relapse after a mean interval of 49.75 days, which was mainly mild to moderate in severity. Unfortunately, the data on the COVID-19 vaccines were missing. CONCLUSION: The analysis suggests the safety profile of the COVID-19 vaccines. All NMOSD patients are strongly recommended to vaccinate for COVID-19. To maximize the effectiveness of the COVID-19 vaccines, further studies are needed to draw the best practice for vaccination.


Assuntos
Vacinas contra COVID-19 , COVID-19 , Neuromielite Óptica , Aquaporina 4 , Azatioprina/uso terapêutico , COVID-19/prevenção & controle , Vacinas contra COVID-19/efeitos adversos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/tratamento farmacológico , Neurologistas , Neuromielite Óptica/tratamento farmacológico , Neuromielite Óptica/etiologia , Pandemias , Rituximab/uso terapêutico , Vacinação/efeitos adversos
19.
J Child Neurol ; 37(8-9): 689-692, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35673712

RESUMO

>Objective: To ascertain the prevalence of culturally native Spanish-speaking child neurologists in the United States. Methods: Prevalence statistics regarding demographic and work profile were applied to data obtained from a cross-sectional electronic survey of Child Neurology Society (CNS) members. Results: Demographics of the 135 respondents were comparable to a similar CNS survey except for ethnicity as shown in Table 1. Fifty- three percent were male and 24% were over age 60. Approximately a quarter were represented each from East, South, Midwest, and Western US. 42% self-identified as Spanish, Hispanic, or Latino. 62% spoke English as their primary language and 39% spoke Spanish as their primary language. Two-thirds graduated from a US medical school, 51% practice general neurology, and epilepsy was the most common subspecialty (18%). Two-thirds of respondents practice at a major teaching hospital, and 93% hold university academic appointments. 79% are AAN members. 76% did not have medical student debt at the time of the survey. 29% report signs consistent with burnout. 87% would choose Child Neurology again and 96% would recommend Child Neurology to a medical student. Conclusion: 40% of survey respondents self-identified as Hispanic, Latino or Spanish and spoke Spanish as the primary language and the majority practice in Academic Medicine. Nearly a third of those in the current survey identify burnout symptoms. Consideration of distinctive language and cultural characteristics across the US may lead to provision of a more patient-centered and equitable care.


Assuntos
Idioma , Neurologistas , Criança , Estudos Transversais , Demografia , Feminino , Hispânico ou Latino , Humanos , Masculino , Pessoa de Meia-Idade , Estados Unidos/epidemiologia
20.
Epilepsia Open ; 7(3): 442-451, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-35726385

RESUMO

OBJECTIVE: This study aimed to describe the characteristics of pediatric neurologists (PNs) in Latin America (LA) who attend to children and adolescents with epilepsy and convey to them the risk of sudden unexpected death in epilepsy (SUDEP). METHODS: Personal data and details of discussion of SUDEP with families, including relevance of SUDEP disclosure, frequency of such communication, perceived benefits and risks of disclosure, extent of training received on such disclosure, and professional experience with SUDEP, were collected through an online survey of PNs from LA. Their personal experience in carrying out this conversation was obtained through responses to an open question, further used to identify the main barriers. RESULTS: Of the 442 surveys received, 367 (83%) were analyzed. Most participants (73.8%) responded that the communication of SUDEP risk was relevant or very relevant; however, only 17.9% reported communicating it always or very frequently. Factors that increased the frequency of SUDEP communication included patients with higher levels of complexity (OR = 2.18, P = .003) and the physician's personal experience with SUDEP (OR = 2.305, P < .001). Direct questions from the family and avoiding scaring them about a rare outcome were the main motivations behind discussing and not discussing SUDEP, respectively. In the open question, respondents identified worries about the patient's ability to understand the information and cultural gaps as barriers. "Informing with the intention of improving adherence to treatment" and "establishing an empathic relationship" were significantly related. Further, the concept of "do not scare" was significantly related to "personal difficulties in discussing SUDEP." SIGNIFICANCE: Although most PNs agree that communication about SUDEP is relevant, only a minority actually engages in it. Participants identified a lack of appropriate training in such communication as a barrier. A better understanding of communication expectations, education of health professionals, and communication techniques have a strong relevance in diminishing the gap between guidelines and practice.


Assuntos
Epilepsia , Morte Súbita Inesperada na Epilepsia , Adolescente , Cuidadores , Criança , Comunicação , Humanos , América Latina , Neurologistas
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