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 , NeurologistasRESUMO
Epilepsy and attention deficit and hyperactivity disorder (ADHD) are frequent conditions in pediatrics. Their association is frequent and complex, often sharing psychiatric comorbidity. Patients who present epilepsy and ADHD, show equal frequency in both genders, with the inattentive type, as predominant presentation. Cognitive deficit increases the risk of associating ADHD in patients with epilepsy. There is not enough evidence for other risk factors, however there is enough information that allows to ant icipate its presence in some types of epilepsy, with neuropsychological models that evidence the underlying network dysfunction. The relationship with frequency and seizure control, electroencephalographic alterations and antiepileptic drugs (AEDs) is also reviewed. Recommendations to reduce adverse effects of AEDs are described. The diagnosis must therefore be based on suspicion, through clinical instruments and assessments of cognitive functioning. Multimodal treatment is also recommended in patients with ADHD with and without epilepsy. Psych stimulants can be used safely. The quality of life of the patients and their families is affected, so it is advisable for them to be supported by a specialized team that could provide education, early assessment and therapy. If they are omitted, the consequences can be negative at school, social environment and emotional development, which could be relevant and become persistent.
La epilepsia y el trastorno por déficit de atención e hiperactividad (TDAH) son condiciones frecuentes en pediatría y suelen presentarse asociadas en muchos pacientes. Su relación es compleja y comparten comorbilidad psiquiátrica. Los pacientes con ambas condiciones conjuntas, epilepsia y TDAH, se presentan con igual frecuencia en ambos géneros, predominando la presentación inatenta. El déficit cognitivo incrementa el riesgo de asociar TDAH en pacientes con epilepsia. No hay evidencia suficiente para otros factores de riesgo, sin embargo, se puede anticipar su presencia en pacientes con algunos tipos de epilepsia y con modelos neuropsicológicos que evidencian la disfunción de redes subyacentes. Se revisa la relación con el control de crisis, las alteraciones electroencefalográficas y los fármacos antiepilépticos (FAEs). Se describen las recomendaciones para reducir efectos adversos de FAEs. El diagnóstico de TDAH en pacientes con epilepsia debe partir por la sospecha, a través de instrumentos clínicos y valoraciones de funcionamiento cognitivo. El tratamiento multimodal es recomendado para pacientes con TDAH con y sin epilepsia. Los psicoestimulantes se pueden usar con seguridad. La calidad de vida se afecta en pacientes y sus familias, por lo que la educación, pesquisa precoz y referencia para rehabilitación, están encaminadas a resolver las dificultades de estos pacientes. En caso contrario, se generan consecuencias negativas escolares, sociales y emocionales, que pueden ser relevantes y persistentes.
Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/etiologia , Transtorno do Deficit de Atenção com Hiperatividade/fisiopatologia , Epilepsia/complicações , Epilepsia/fisiopatologia , Anticonvulsivantes/uso terapêutico , Criança , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/fisiopatologia , Comorbidade , Epilepsia/tratamento farmacológico , Humanos , Fatores de RiscoRESUMO
La epilepsia y el trastorno por déficit de atención e hiperactividad (TDAH) son condiciones frecuentes en pediatría y suelen presentarse asociadas en muchos pacientes. Su relación es compleja y comparten comorbilidad psiquiátrica. Los pacientes con ambas condiciones conjuntas, epilepsia y TDAH, se presentan con igual frecuencia en ambos géneros, predominando la presentación inatenta. El déficit cognitivo incrementa el riesgo de asociar TDAH en pacientes con epilepsia. No hay evidencia suficiente para otros factores de riesgo, sin embargo, se puede anticipar su presencia en pacientes con algunos tipos de epilepsia y con modelos neuropsicológicos que evidencian la disfunción de redes subyacentes. Se revisa la relación con el control de crisis, las alteraciones electroencefalográficas y los fármacos antiepilépticos (FAEs). Se describen las recomendaciones para reducir efectos adversos de FAEs. El diagnóstico de TDAH en pacientes con epilepsia debe partir por la sospecha, a través de instrumentos clínicos y valoraciones de funcionamiento cognitivo. El tratamiento multimodal es recomendado para pacientes con TDAH con y sin epilepsia. Los psicoestimulantes se pueden usar con seguridad. La calidad de vida se afecta en pacientes y sus familias, por lo que la educación, pesquisa precoz y referencia para rehabilitación, están encaminadas a resolver las dificultades de estos pacientes. En caso contrario, se generan consecuencias negativas escolares, sociales y emocionales, que pueden ser relevantes y persistentes.
Epilepsy and attention deficit and hyperactivity disorder (ADHD) are frequent conditions in pediatrics. Their association is frequent and complex, often sharing psychiatric comorbidity. Patients who present epilepsy and ADHD, show equal frequency in both genders, with the inattentive type, as predominant presentation. Cognitive deficit increases the risk of associating ADHD in patients with epilepsy. There is not enough evidence for other risk factors, however there is enough information that allows to ant icipate its presence in some types of epilepsy, with neuropsychological models that evidence the underlying network dysfunction. The relationship with frequency and seizure control, electroencephalographic alterations and antiepileptic drugs (AEDs) is also reviewed. Recommendations to reduce adverse effects of AEDs are described. The diagnosis must therefore be based on suspicion, through clinical instruments and assessments of cognitive functioning. Multimodal treatment is also recommended in patients with ADHD with and without epilepsy. Psych stimulants can be used safely. The quality of life of the patients and their families is affected, so it is advisable for them to be supported by a specialized team that could provide education, early assessment and therapy. If they are omitted, the consequences can be negative at school, social environment and emotional development, which could be relevant and become persistent.