Interviews with patients aged 6-17 years provide valuable insights for physicians who need to deliver an epilepsy diagnosis.

AIM: Meeting children's needs when communicating an epilepsy diagnosis can have a large impact on their treatment. We investigated children's experiences and wishes concerning their first conversation about epilepsy. METHODS: This prospective study was performed in the neuropaediatric departments of two German university hospitals from 2 October 2018 to 12 April 2019. The semi-structured interview contained open questions, and multiple answers were allowed. RESULTS: We interviewed 101 patients (57 male) aged 6-17 (median 11) years and asked them to put themselves in the place of a physician delivering an epilepsy diagnosis. They said they would be careful and friendly and consider the children's feelings (29%), give them detailed information about their condition (29%) and reduce their fears and offer hope (26%). They would tell them the importance of always taking their medication and explain why (25%), make sure that the conversation took place in a comfortable setting (21%), explain any safety precautions (19%), keep the conversation straightforward and provide examples (16%). CONCLUSION: Children with epilepsy provided concrete recommendations for physicians delivering an epilepsy diagnosis, with regard to the ideal setting, important topics and optimal communication. The recommendations could help physicians meet children's needs.

Anticonvulsant long-term and rescue medication: The children's perspective.

BACKGROUND: Little is known about children's perspectives and attitudes towards their long-term and rescue anticonvulsant medication. METHODS: We interviewed paediatric patients aged 6-18 years in two university hospitals concerning their anticonvulsant treatment based on a structured questionnaire. We also asked them to draw a picture titled "Me and my medication". RESULTS: We interviewed 100 patients with anticonvulsant long-term medication. 87/100 patients considered their medication to be helpful. 66/100 patients gave an explanation on why a regular medication intake is important, e.g. "Reduction/prevention of seizures", "Otherwise I have to go to hospital", "I don't want to die" or "Kill the virus which is causing epilepsy". Of 92 patients with a prescribed rescue medication, 22 (24%) did not know about it. Of the remaining 70, 39 (56%) stated they always carry it with them. When asked to imagine being the physician and to inform about the medication, the children would use illustrative (e.g. brochures) or demonstration material (e.g. "real tablets") to aid their consultation (47/100). 55/100 would stress the necessity of a regular intake. 52 participants drew a picture related to the given topic. Of those, only 1 depicted rescue medication. CONCLUSION: Paediatric patients mostly have a positive attitude towards their medication. However, misconceptions exist and participants expressed the desire for more interactive support in the medical counselling. Children are not sufficiently aware of their rescue medication in everyday life. Consequently, physicians should consider the children's needs in their consultations and put more focus on potentially life-saving rescue medication.

Why do children and adolescents with epilepsy disclose or not disclose their condition to their friends?

A diagnosis of epilepsy substantially influences the lives of affected children and adolescents, and concealing the diagnosis can generate additional stress. However, little is known about whether children and adolescents communicate their diagnosis to their friends. We performed a survey at two German university hospitals. Epilepsy patients aged 6-18 years were asked why they did or did not disclose their condition to their friends. A total of 101 patients (44 female, 57 male) were interviewed. Twenty-one (21%) informed all their friends about their epilepsy, 63 (62%) informed only certain friends, and 3 (3%) did not specify. Fourteen (14%) did not inform any friends. Their reasons for informing their friends were trust in friends (47/87; 54%); questions from friends, e.g., about missed school days (29/87; 33%); a wish for friends to be informed in case of an emergency (15/87; 17%); and a desire to live openly with the condition (8/87; 9%). The reasons for not informing friends were fear of stigmatization/shame (4/14; 29%), discouragement from parents (3/14; 21%), and a wish for confidentiality (3/14; 21%).Conclusion: Most children and adolescents inform their friends about their epilepsy. Fear of stigmatization is the main reason for not informing friends about this condition. What is Known • An epilepsy diagnosis is a life-changing event for affected children and adolescents. • Having to conceal the diagnosis can be very stressful. What is New • Most pediatric epilepsy patients informed at least some close friends about their diagnosis motivated by trust in friends; questions from friends, e.g., about missed school days; and a wish for friends to be informed in case of an emergency. • Fear of stigmatization/shame, discouragement from parents, and a wish for confidentiality were the motivations for concealing the disease.

How do pediatric patients perceive adverse drug events of anticonvulsant drugs? A survey.

Anticonvulsant drugs have a high risk of adverse drug events. Little is known about the perception of those events by pediatric patients. We performed a survey in the neuropediatric departments of two university hospitals. Using a questionnaire, we interviewed patients aged 6-18 years with current anticonvulsant treatment regarding (i) their fears about potential adverse drug events, (ii) experienced adverse drug events, and (iii) perceived burden of experienced adverse drug events. One hundred patients took part in the interview. (i) 40 (40%) expressed fears that the medication could harm them. Eighteen of 40 (45%) named fears concerning specific adverse drug events. Of those, 12/18 (67%) feared neurologic or psychiatric symptoms. (ii) 37 (37%) of children described altogether 60 experienced adverse drug events. Of those, 38 (63%) concerned neurologic or psychiatric symptoms. (iii) 32/37 (82%) children who experienced adverse drug events felt bothered by the experienced event. Among others, they described an emotional burden (11/37, 30%), and restrictions in school performance (8/37, 22%) and favorite leisure activities (4/37, 11%).Conclusion: School-aged children are well able to describe adverse drug events of their anticonvulsant medication. Almost two thirds of the described events concern neurologic or psychiatric symptoms that cause an emotional burden and restrictions according to the patients. What is Known: • Anticonvulsants have a high potential of adverse drug events. • In an earlier survey, parents expressed fears of severe adverse drug events such as liver failure, which seldom occur, and reported a high number of neurological and psychological adverse drug events. What is New: • Many children fear that their anticonvulsants could harm them, and they fear and experience neurological and psychological adverse drug events. • According to the children, adverse drug events cause an emotional burden and restrictions in school performance and favorite leisure activities.