How do children with focal epilepsies perceive the moment they realize that they are about to have a seizure? A pilot study.

PROBLEM: A seizure is a challenging situation for children with epilepsy. Little is known regarding the experience of children who perceive in advance that they are about to have a seizure. METHODS: From September 2020 to February 2021, we invited children with focal epilepsies aged 6-18 years to participate in a semi-structured interview. RESULTS: Of 52 children with focal epilepsies, 22 (42 %) said they perceive in advance that they are about to experience a seizure [11 with self-limited epilepsy with centro-temporal spikes (SELECTs), 11 with other focal epilepsies]. All 22/22 (100 %) children described physical symptoms such as headache or a numb feeling in one half of the body. Of those children, 17/22 (77 %) stated they try to do something about the seizure. Those strategies were perceived as helpful by 0/11 (0 %) children with SELECTs and 9/11 (86 %) children with other focal epilepsies (p < 0.001). Of the children with SELECTs 5/11 (45 %), and of those with other focal epilepsies 9/11 (86 %) stated they would like to know in the morning if they are to experience a seizure that day (n.s.). CONCLUSION: Children who perceive in advance that they are about to have a seizure are well able to describe their experience. Most children take measures to manage their seizures. Those measures were regarded as helpful by most children with other focal epilepsies, but by no child with SELECTs. Larger studies are necessary to determine the factors contributing to the child's perception as well as the nature of the support that they require.

How Intuitive Is the Administration of Pediatric Emergency Medication Devices for Parents? Objective Observation and Subjective Self-Assessment.

BACKGROUND: to assess the intuitiveness of parents' administration of pediatric emergency devices (inhalation, rectal, buccal, nasal, and auto-injector). METHODS: We invited parents without prior experience to administer the five devices to dummy dolls. We observed whether the parents chose the correct administration route and subsequently performed the correct administration procedures without clinically relevant errors. We interviewed parents for their self-assessment of their own administration performance and willingness to administer devices in actual emergencies. RESULTS: The correct administration route was best for the inhalation device (81/84, 96% of parents) and worst for the intranasal device (25/126, 20%). The correct administration procedures were best for the buccal device (63/98, 64%) and worst for the auto-injector device (0/93, 0%). Their own administration performance was rated to be best by parents for the inhalation device (59/84, 70%) and worst for the auto-injector device (17/93, 18%). The self-assessment of the correct administration overestimated the correct administration procedures for all the devices except the buccal one. Most parents were willing to administer the inhalation device in an emergency (67/94, 79%), while the fewest were willing to administration procedures the auto-injector device (28/93, 30%). CONCLUSIONS: Intuitiveness concerning the correct administration route and the subsequent correct administration procedures have to be improved for all the devices examined. The parents mostly overestimated their performance. Willingness to use a device in an actual emergency depended on the device.

Interviews with children and adolescents with epilepsy or asthma about the situation of their healthy siblings.

AIM: Chronic conditions can influence the situation of healthy siblings of affected children. We investigated the opinion of the affected child about the situation of their healthy sibling and the sibling relationship. METHODS: We performed a semi-structured interview with epilepsy or asthma patients aged 6-18 years and asked them to draw a picture: "Epilepsy/Asthma, my siblings and me." RESULTS: Of the 58 children with epilepsy, 67%, and of the 40 children with asthma, 60% thought that their siblings were worried about the condition. Among other aspects, they addressed helplessness during a seizure. Of the children with epilepsy, 83% and of those with asthma, 95% assumed that their siblings were not disadvantaged because of the participant's condition. Of the patients with epilepsy, 91% and of those with asthma, 93% thought that the sibling relationship would not be different without the condition. Of the participants with epilepsy, 86% and of those with asthma, 93% drew a picture; 30% with epilepsy and 14% with asthma visualised an interaction with their siblings in context of a seizure or episode of dyspnoea. CONCLUSION: According to the affected children, the condition worries their siblings but does not affect the siblings' lives or the sibling relationship.

Drug-handling problems and expectations of the ideal pediatric drug-reported by children and their parents.

Experienced drug-handling problems and inadequately considered expectations for drug therapy have an unfavorable influence on therapy. We performed a questionnaire survey in (i) parents of 0-5-year-old children and (ii) 6-17-year olds and their parents. We assessed (A) experienced drug-handling problems and (B) expectations for drug therapy. (i) Forty-six parents and (ii) 103 children and their parents participated in the study. Experienced drug-handling problems were described by (i) 100% of parents and (ii) 62% of children and 70% of parents. Problems concerned with the preparation of the drug, dosing, compliance with the time interval, and acceptance. (i) Sixty-five percent of parents preferred a peroral route of drug administration, while (ii) 74% of children and 86% of parents did so. Preferred characteristics of peroral drug formulations, e.g., liquid versus solid drug formulations or flavor, were highly heterogeneous. Preferences of 6-17-year-old children and their parents matched in 43 to 66%.   Conclusion: Most children and their parents had already experienced drug-handling problems. Preferences concerning the ideal pediatric drug were highly heterogeneous and in about half of cases, preferences of children and their parents differed. Thus, the children should be approached directly. If information is solely gained from parents, the children's needs might remain unmet. What is Known: • Pediatric drug administration is complex and therefore error-prone. • Experiences and expectations of children and their parents should be considered. What is New: •Most pediatric patients and their parents have already experienced drug-handling problems. • Expectations concerning the ideal pediatric drug are highly heterogeneous. Parents are often insufficiently aware of those expectations in their children.

Prejudices against people with epilepsy as perceived by affected people and their families.

PROBLEM: Prejudices can impair social participation of people with epilepsy. METHODS: From 2019 to 2020, we invited people with epilepsy and their relatives across Germany to fill in a questionnaire. RESULTS: Two hundred and thirty people with epilepsy (PWE, median age: 40 years; min./max.: 19/83; 66% female) and 103 relatives (REL, median age: 42 years; min./max. 23/70; 83% female) took part in the survey. 44% PWE and 40% REL said prejudices against PWE had not declined in recent years. Of PWE, 64% reported they had experienced prejudices themselves. In an open question with multiple answers possible, 71% of the PWE described concrete prejudices against PWE, 62% of the REL did so. The reported prejudices concerned symptoms of epilepsy (37% PWE; 23% REL), academic or occupational performance (47% PWE; 38% REL), social or family life (27% PWE, 29% REL), and other topics (7% PWE, 4% REL). Of PWE, 88% said all or almost all relatives knew about their condition, 74% stated this applied to all or almost all friends, and 48% told all or almost all colleagues about their epilepsy. Of PWE, 94% would want to know if a relative had epilepsy, 87% would like to know about a friend's epilepsy, 70% about a colleague's epilepsy. Fear of stigmatization was a reason for not always communicating the condition according to 20% PWE and 63% REL. None of PWE and 16% of REL named shame as a reason. CONCLUSION: People with epilepsy still experience prejudices and fear of stigmatization hinders an open communication about the condition.

Febrile seizures: perceptions and knowledge of parents of affected and unaffected children.

Febrile seizures (FS) in children are common, but little is known about parents' perceptions and knowledge of FS. We interviewed parents of children aged 6 months to 6 years affected by FS (FS group, 65 parents) or unaffected (control group, 54 parents). In the FS group, 32% said they knew their child had an FS when the first event occurred, and 89% described fear when the child had a seizure, with a median intensity of 10/10 (Q25/Q75: 9/10). Related to follow-up, 77% in the FS group (will) observe their child more carefully after the first seizure happened, and 63% (will) give antipyretics earlier at a median temperature of 38.2 °C (100.8 °F). In the FS group, 62% were unaware of FS before the first event (54% of control group did not know about FS thus far, n.s.). In the FS group, 20% would put a solid object in the mouth of a child having a seizure (control group, 39%, p = 0.030), and 92% would administer an available anti-seizure rescue medication (control group, 78%, p = 0.019). In the FS group, 71% feared that children with FS might suffocate (control group, 70%, n.s.). CONCLUSION: Information about FS and their management should be more available to improve parents' coping and patient safety. WHAT IS KNOWN: • Febrile seizures in children are common. • The prognosis of children suffering from febrile seizures is usually rather good. WHAT IS NEW: • Over half of parents had not informed themselves about febrile seizures so far; and only 32% of parents realized their child had a febrile seizure when it occurred. • Most parents described own fear with a median intensity of 10/10; and 63% (will) give antipyretics earlier at a median temperature of 38.2 °C (100.8 °F).

Physicians' perspectives on adverse drug reactions in pediatric routine care: a survey.

BACKGROUND: Children and adolescents are at particular risk for adverse drug reactions (ADRs). We investigated physicians' perceptions on ADRs in pediatric routine care. METHODS: In this exploratory study from April to November 2020, we invited physicians treating pediatric patients across Germany to complete an online questionnaire consisting mainly of closed questions. RESULTS: Completion rate was 98% (127/129). Of all participants, 23% (29/127) stated they were not able to estimate how many of their pediatric patients experienced ADRs during drug therapy. The remaining physicians estimated that 7.5% (median; Q25/Q75 3%/20%) of their pediatric patients were affected by ADRs. Regarding counseling on ADRs, 61% (77/127) stated they do not ask regularly the extent to which parents want to be informed. In total, 26% (33/127) stated they avoid counseling on ADRs concerning commonly used approved therapies, whereas only 4% (5/127) did so concerning off-label use (P < 0.001). Altogether, 16% (20/127) stated they rather prescribe new medicines as they hope for better effectiveness; 72% (91/127) said they are cautious about doing so owing to yet unknown ADRs. Of all respondents, 46% (58/127) stated they do not report ADRs to the authorities. Concerning the black triangle symbol, a European pharmacovigilance measure, 11% (14/127) stated they knew it and 6% (7/127) stated they reported any suspected ADR for drugs with that symbol. CONCLUSIONS: Physicians' perspectives on ADRs were ambivalent: ADRs influenced their parent counseling and drug prescribing; yet, they struggled to estimate the impact of ADRs on their patients and were not aware of specific pharmacovigilance measures.

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.

Knowledge of and attitudes towards epilepsy among first- and second-year students at a German university.

PROBLEM: Little is known about university students' knowledge of and attitudes towards epilepsy. METHODS: We invited first- and second-year students of different study subjects at Rostock University to complete a questionnaire. RESULTS: Overall, 497 students took part in the survey (209 medicine, 105 theology, 94 primary education, 89 computer science). Of all students, 38.0% knew someone with epilepsy, and 27.2% had already witnessed a seizure. Fewer computer science students than medical students knew someone with epilepsy (p = 0.002) and had witnessed a seizure (p < 0.001). From five presented symptoms, all were correctly assigned to a possible seizure by 27.0% of all students. If they had epilepsy themselves, 43.7% would tell their fellow students about it; and 76.1% would definitely be friends with someone with epilepsy, and 53.7% would definitely date a person with epilepsy. On a 5-point Likert scale, computer science students expressed less willingness to be friends with (p < 0.001) or to date someone with epilepsy (p = 0.004) than medical students. The willingness of theology and primary education students did not significantly differ from that of medical students. We found no statistical differences between medical students and the other student groups for correct assignment of all symptoms and the readiness to tell others if they had epilepsy themselves. CONCLUSION: First- and second-year students showed gaps in knowledge and reservations about people with epilepsy, regardless of their study subject. However, computer science students have had particularly little contact with people with epilepsy and expressed less positive attitudes. Medical students, on the other hand, hardly differed from students of theology and primary education.

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.