Views of adolescents and their parents on mobile apps for epilepsy self-management.

INTRODUCTION: New technologies are ubiquitous in our everyday lives, and this is especially true for teenagers. Very few mobile apps have been designed for adolescents with epilepsy. In order to better understand their expectations as well as those of their parents, we conducted a survey on this topic. METHODS: The survey consisted of an anonymous self-administered questionnaire that was distributed to adolescents with epilepsy aged 10 to 18 years old and their parents. Questionnaires contained 15 questions including 8 multiple choice questions, 5 groups of multiple questions with a rating scale ranging from 1 to 6, and 2 open-ended questions covering the scope of the interest of epilepsy self-management apps, seizure and epilepsy management, antiseizure medications, and information on epilepsy. RESULTS: Surveys were answered by 17 teenagers and 19 parents. It showed that adolescents embrace new technologies. Parents' highest expectations regarding mobile apps contents were seizure management and emergency information, while adolescents were expecting contents on epilepsy daily life, as well as a tool that would improve antiseizure medication compliance. CONCLUSION: Parents and adolescents' expectations on the content of an epilepsy app were different.

Ketogenic diet therapies in France: State of the use in 2018.

Ketogenic diets (KDs) are well-established treatments for pharmacoresistant epilepsies and some metabolic disorders. The amount of publications including evidence-based trials has continuously increased in the last 10 years. We evaluated the use of KDs in France using 2 surveys from more than ten years ago (2005 and 2008). METHODS: We conducted a new survey based on 10 questions to evaluate the evolution of the practice since 2008 and the thoughts of French pediatric neurologists on the barriers as well as possible ways to support the use of KDs. RESULTS: All centers increased their use of KDs over time. There are now 5 out of 25 centers that are prescribing the modified Atkins diet. French pediatric neurologists reported the acceptability and the everyday life burden due to KDs as the most important barriers. CONCLUSION: The use of the diet in France seems to follow the increase of knowledge in this field.

[The role of the nurse in the patient education of young epileptic patients]. / Le rôle de l'infirmière dans l'éducation thérapeutique des jeunes épileptiques.

An epileptic seizure in a child is a major source of anxiety and turns the family's everyday life upside down. Through therapeutic education, the nurse guides the families towards the autonomous management of the seizures, antiepileptic treatments, adaptations to daily life and potential comorbidities.

Difference in anxiety symptoms between children and their parents facing a first seizure or epilepsy.

Many studies have shown that anxiety disorders are common in children with epilepsy. We explored symptoms of anxiety simultaneously in children and their parents. We conducted a cross-sectional study using the Revised Children's Manifest Anxiety Scale in children and the State-Trait Anxiety Inventory for Adult in parents. We included 118 parents and 67 children, who were divided into three groups: (1) first seizure, (2) epilepsy, and (3) nonepileptic paroxysmal event. We found that the level of anxiety in parents and children differed. We observed a significant increase in the anxiety level of parents whose children have had a first seizure, while we found a significant increase in the anxiety level of children and adolescents followed for epilepsy. These findings suggest that there is no direct relationship in the anxiety of the parents and their child. Further studies are needed to understand this variation over time.

Perceptions of fever and fever management practices in parents of children with Dravet syndrome.

OBJECTIVE: The first seizure in Dravet syndrome is often considered a febrile seizure (FS), but shortly thereafter, both FSs and seizures without fever occur, leading to diagnosis. Fever remains a factor that easily precipitates seizures. We studied the perception and management of fever of parents of children with Dravet syndrome. METHODS: We conducted this survey using an anonymous, self-administered questionnaire. RESULTS: A total of 20 parents returned the questionnaire. Fever remains a trigger of seizures in 90% of patients. All parents have an accurate knowledge of fever and its management. The familial and socioprofessional impact of fever attacks appears to be very strong. CONCLUSION: Fever represents a significant concern of parents of children with Dravet syndrome. The level of parental anxiety is high in case of fever. The anxiety seems related to fear of seizure recurrence leading to significant modification of parental behavior.