Critical incidents, nocturnal supervision, and caregiver knowledge on SUDEP in patients with Dravet syndrome: A prospective multicenter study in Germany.

OBJECTIVE: The aim was to investigate the monitoring, interventions, and occurrence of critical, potentially life-threatening incidents in patients with Dravet syndrome (DS) and caregivers' knowledge about sudden unexpected death in epilepsy (SUDEP). METHODS: This multicenter, cross-sectional study of patients with DS and their caregivers in Germany consisted of a questionnaire and prospective diary querying the disease characteristics and demographic data of patients and caregivers. RESULTS: Our analysis included 108 questionnaires and 82 diaries. Patients with DS were 49.1% male (n = 53), with a mean age of 13.5 (SD ± 10.0 years) and primary caregivers were 92.6% (n = 100) female, with a mean age of 44.7 (SD ± 10.6 years). Monitoring devices were used regularly by 75.9% (n = 82) of caregivers, and most monitored daily/nightly. Frequently used devices were pulse oximeters (64.6%), baby monitors (64.6%), thermometers (24.1%), and Epi-Care (26.8%). Younger caregiver and patient age and history of status epilepticus were associated with increased use of monitoring, and 81% of monitor users reported having avoided a critical incident with nocturnal monitoring. The need for resuscitation due to cardiac or respiratory arrest was reported by 22 caregivers (20.4%), and most cases (72.7%) were associated with a seizure. Caregivers reported frequently performing interventions at night, including oropharyngeal suction, oxygenation, personal hygiene, and change of body position. Most caregivers were well informed about SUDEP (n = 102; 94%) and monitored for a lateral or supine body position; however, only 39.8% reported receiving resuscitation training, whereas 52.8% (n = 57) knew what to do in case the child's breathing or heart activity failed. SIGNIFICANCE: Critical incidents and the need for resuscitation are reported frequently by caregivers and may be related to high mortality and SUDEP rates in DS. Resuscitation training is welcomed by caregivers and should be continuously provided. Oxygen monitoring devices are frequently used and considered useful by caregivers.

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.

Complementary and alternative medicine (CAM) is frequently used by parents for the treatment of functional constipation in children.

OBJECTIVES: Complementary and alternative medicine (CAM) has gained increasing attention as a supportive treatment for chronic diseases such as epilepsy, migraine, autism, and cancer in children. This study aimed to determine the frequency, motivation, and outcomes of CAM in children with functional constipation. METHODS: From January 2018 till September 2019, parents of patients (0-18 years) who were treated for functional constipation (ROME IV-criteria) at our colorectal center were asked to complete a questionnaire on the utilization of CAM. Demographic data and clinical assessments were documented and analyzed for patients with and without CAM treatment. RESULTS: A total of 115 patients were included (mean age: 5.1 years; 49% males), of whom 29 (25%) used CAM as an alternative (4/29,14%) or in addition to conventional therapy (CT), including osteopathy (48%), homeopathy (45%), and natural/herbal remedies (17%). The main reason parents reported for the use of CAM was the urge to leave no treatment option unattempted (76%). Multivariate analysis also identified persistent constipation under CT (72%), adverse effects of CT (24%), and parental use of CAM themselves (83%) as independent variables associated with CAM use. Parents reported positive changes in stool frequency (38%) and fecal incontinence (21%) with CAM. The vast majority (93%) plan to use CAM in the future, and even non-CAM users showed high interest (60%). CONCLUSION: One in four children with functional constipation receives CAM. Significant improvement in stool frequency and continence is missing in the majority. However, parental interest in CAM remains high. Physicians should be aware of CAM when counseling families for functional constipation in children.

Gain-of-function variants in GABRD reveal a novel pathway for neurodevelopmental disorders and epilepsy.

A potential link between GABRD encoding the δ subunit of extrasynaptic GABAA receptors and neurodevelopmental disorders has largely been disregarded due to conflicting conclusions from early studies. However, we identified seven heterozygous missense GABRD variants in 10 patients with neurodevelopmental disorders and generalized epilepsy. One variant occurred in two sibs of healthy parents with presumed somatic mosaicism, another segregated with the disease in three affected family members, and the remaining five occurred de novo in sporadic patients. Electrophysiological measurements were used to determine the functional consequence of the seven missense δ subunit variants in receptor combinations of α1ß3δ and α4ß2δ GABAA receptors. This was accompanied by analysis of electroclinical phenotypes of the affected individuals. We determined that five of the seven variants caused altered function of the resulting α1ß3δ and α4ß2δ GABAA receptors. Surprisingly, four of the five variants led to gain-of-function effects, whereas one led to a loss-of-function effect. The stark differences between the gain-of-function and loss-of function effects were mirrored by the clinical phenotypes. Six patients with gain-of-function variants shared common phenotypes: neurodevelopmental disorders with behavioural issues, various degrees of intellectual disability, generalized epilepsy with atypical absences and generalized myoclonic and/or bilateral tonic-clonic seizures. The EEG showed qualitative analogies among the different gain-of-function variant carriers consisting of focal slowing in the occipital regions often preceding irregular generalized epileptiform discharges, with frontal predominance. In contrast, the one patient carrying a loss-of-function variant had normal intelligence and no seizure history, but has a diagnosis of autism spectrum disorder and suffers from elevated internalizing psychiatric symptoms. We hypothesize that increase in tonic GABA-evoked current levels mediated by δ-containing extrasynaptic GABAA receptors lead to abnormal neurotransmission, which represent a novel mechanism for severe neurodevelopmental disorders. In support of this, the electroclinical findings for the gain-of-function GABRD variants resemble the phenotypic spectrum reported in patients with missense SLC6A1 (GABA uptake transporter) variants. This also indicates that the phenomenon of extrasynaptic receptor overactivity is observed in a broader range of patients with neurodevelopmental disorders, because SLC6A1 loss-of-function variants also lead to overactive extrasynaptic δ-containing GABAA receptors. These findings have implications when selecting potential treatment options, as a substantial portion of available antiseizure medication act by enhancing GABAergic function either directly or indirectly, which could exacerbate symptoms in patients with gain-of-function GABRD variants.

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.

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.

Medicine and supplement use in infants, children, and adolescents depends on sex, age, and socioeconomic status: results of a German longitudinal population-based cohort study (LIFE Child).

Children and adolescents are exposed to medicines and supplements, but only a few studies have evaluated the actual intake in routine care. Thus, we performed a pharmacoepidemiological evaluation of a longitudinal population-based pediatric cohort study (LIFE Child) conducted at the University Hospital of Leipzig between 2014 and 2019. We analyzed all visits of the participants of the LIFE Child cohort between 1 January 2014 and 31 December 2019. Participants were asked to bring their medicines and supplements to their appointments at the study center. If they had not brought the preparations with them, attempts were made to obtain the relevant information during a telephone call after the visit to the study center. Furthermore, the participants and their parents were interviewed on medicine and supplement use and on sociodemographic and socioeconomic data during their visit to the study center. Associations of medicine and supplement use with age, sex, and socioeconomic status were analyzed using multivariate binary logistic regressions to obtain adjusted odds ratios (aOR) and 95% confidence intervals (95% CI). Furthermore, the number of the respective visit was included as possible confounder in the multivariate model. We included 3602 participants who visited the study center 11,906 times. The intake of 9759 medicines and supplements was recorded. Based on the evaluation of all study visits, 49% of the children and adolescents took at least one medicine or supplement. Self-medication accounted for 28% of the medicines and supplements. The prevalence of overall intake increased from 45% in 2014 to 53% in 2019 (aOR 2.63, 95% CI 2.23, 3.09). The prevalence was the highest (77%) in children aged 0- < 3 years, owing mainly to vitamin D. The prevalence of medicine use was higher in females (40%; aOR 1.18, 95% CI 1.10, 1.28) than in males (35%), owing mainly to the intake of ibuprofen and hormonal contraceptives in adolescent females. A high socioeconomic status was a predictor of lower medicine (aOR 0.80, 95% CI 0.68, 0.95) and higher supplement (aOR 1.47, 95% CI 1.09, 1.98) use. CONCLUSION: Half of all children and adolescents took at least one medicine or supplement. The intake varied depending on age and sex. Furthermore, high socioeconomic status was associated with a decreased probability of medicine intake. WHAT IS KNOWN: • Half of all children and adolescents in Germany are exposed to medicines and supplements. • Data on the actual intake are scarce as most studies focus on prescribed medicines. WHAT IS NEW: • The prevalence of medicine/supplement use rose from 2014 (45%) to 2019 (53%). The prevalence was age-dependent: it was the highest in children aged < 3 years, and the lowest in children aged 6-< 9 years. Females took medicines more frequently than males. • High socioeconomic status was associated with lower medicine and higher supplement use. Self-medication accounted for 28% of all preparations.

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.

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).

Handling Errors in the Use of Inhalation Devices: Inhalation Technique Skills and Knowledge in Pediatric Nurses.

BACKGROUND: Children suffering from bronchial diseases need assistance from nurses in the use of inhalation devices. PURPOSE: We aimed to assess nurses' skills and knowledge concerning drug administration with inhalation devices in hospitalized pediatric patients. METHODS: An expert panel defined medication errors in drug administration with inhalation devices in children. We monitored 241 inhalation procedures to investigate nurses' inhalation technique skills. Twenty-nine nurses completed a questionnaire to assess nurses' knowledge. RESULTS: Skills: In 93 of 241 (39%) inhalation procedures, the mask/mouthpiece did not fit airtight. In none of the 11 inhalations administering a glucocorticoid, the patient's mouth was thoroughly cleaned afterward. Knowledge: Ten of 29 nurses (34%) thought a distance between mask and the patient's face was acceptable. Only 16 of 29 (55%) knew that it is necessary to thoroughly clean the patient's mouth after the inhalation of budesonide. CONCLUSIONS: We found that education on inhalation procedures including practical training is required to increase patient safety.

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.

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.

Acute Disseminated Encephalomyelitis with Seizures and Myocarditis: A Fatal Triad.

Autoimmune pathology of acute disseminated encephalomyelitis (ADEM) is generally restricted to the brain. Our objective is to expand the phenotype of ADEM. A four-year-old girl was admitted to the pediatric emergency room of a university medical center five days after a common upper respiratory tract infection. Acute symptoms were fever, leg pain, and headaches. She developed meningeal signs, and her level of consciousness dropped rapidly. Epileptic seizure activity started, and she became comatose, requiring intubation and mechanical ventilation. Serial brain magnetic resonance imaging (MRI) illustrated the fulminant development of ADEM. Treatment escalation with high-dose corticosteroids, immunoglobulins, and plasma exchange did not lead to clinical improvement. On day ten, the patient developed treatment-refractory cardiogenic shock and passed away. The postmortem assessment confirmed ADEM and revealed acute lymphocytic myocarditis, likely explaining the acute cardiac failure. Human metapneumovirus and picornavirus were detected in the tracheal secrete by PCR. Data sources-medical chart of the patient. This case is consistent with evidence from experimental findings of an association of ADEM with myocarditis as a postinfectious systemic autoimmune response, with life-threatening involvement of the brain and heart.

Epilepsy: knowledge and attitudes of physiotherapists, occupational therapists, and speech therapists.

Physiotherapists, occupational therapists, and speech therapists play a key role in the treatment of children with epilepsy. We performed a survey of therapists' knowledge of and attitudes towards epilepsy in two regions of Germany, the city of Leipzig and the rural district of Zwickau. Therapists of 29/68 (43%) outpatient practices and 4/9 (44%) hospitals took part. In total, 195 therapists participated: 63 (32%) physiotherapists, 74 (38%) occupational therapists, and 58 (30%) speech therapist. In 65%, epilepsy was subject of vocational training. Of all therapists, 8% claimed they had not treated epilepsy patients so far. During professional life, 43% had witnessed a seizure. Of all therapists, 44% correctly assumed a seizure could result in death. During a seizure, 42% would perform the obsolete measure of placing something solid in the patient's mouth, and 41% would administer a prescribed rescue medication. More information on epilepsy was requested by 92%.Conclusion: Most therapists treat patients with epilepsy, and almost half have already witnessed a seizure. Often, however, epilepsy is not subject of vocational training. The risk of a fatal outcome of a seizure is underestimated, and many therapists would perform obsolete measures. Knowledge of seizure management should be transmitted to therapists especially during vocational training.

Optimizing parents' performance in anticonvulsant rescue medication administration.

OBJECTIVE: Parents of children with epilepsy are at risk of committing high-risk handling errors with a high potential to harm the patient when administering anticonvulsant rescue medication. We developed a training concept addressing identified high-risk handling errors and investigated its effects on parents' skills. STUDY DESIGN: In a controlled prospective intervention study, parents of children with epilepsy were asked to demonstrate their administration of rescue medication by using dummy dolls. A clinical pharmacist monitored rectal or buccal administration and addressed errors in the intervention group with training and information sheets. Three to 6weeks later, intervention's sustainability was assessed at a home visit. RESULTS: One hundred sixty-one parents completed full study assessment: 92 in the intervention group and 69 in the control group. The number of processes with at least one handling error was reduced from 96.4% to 56.7% in rectal tube administration and from 66.7% to 13.5% in buccal administration (both p<0.001). CONCLUSION: A one-time intervention for parents significantly and sustainably reduced high-risk handling errors. Dummy dolls and information sheet were adequate for an effective and feasible training to support the correct administration of anticonvulsant rescue medication.

Knowledge of allergies and performance in epinephrine auto-injector use: a controlled intervention in preschool teachers.

Epinephrine auto-injectors are used for first aid in anaphylactic emergencies by non-healthcare professionals, e.g., (pre-)school teachers. We developed an education session for preschool teachers addressing allergies, anaphylactic emergencies, and administering auto-injectors. We assessed their attitudes and knowledge in allergies and anaphylactic emergency by a questionnaire and monitored their practical performance in administering auto-injectors before the education session, directly after, and 4-12 weeks after the session. From 75 teachers giving their consent to participate, 81% had children with allergies under their supervision and 3% had already administered medication from an available rescue kit. The knowledge of triggers of allergies increased from 9 to 55% directly and to 33% 4-12 weeks after the session (both p < 0.001, compared to baseline). Directly after the session, the number of teachers who felt well-prepared for an anaphylactic emergency rose from 11 to 88%, which decreased to 79% 4-12 weeks thereafter (each p < 0.001). The number of auto-injector administrations without any drug-related problems increased from 3 to 35% directly after the session and shrunk to 16% 4-12 weeks afterwards (both p < 0.025). CONCLUSION: A single education session substantially improved preschool teachers' attitudes and knowledge in allergies and anaphylactic emergencies. Additionally, their practical performance in auto-injector administration increased. What is Known: • Food allergies are increasing among children. • The knowledge about allergies and anaphylactic emergencies is poor. What is New: • The proportion of teachers who felt well-prepared for an anaphylactic emergency increased after a single education session. • The proportion of auto-injector administrations without any drug-related problems additionally increased due to an education session.

Experiences, expectations, and fears of adolescents with epilepsy or bronchial asthma.

Epilepsy and bronchial asthma are frequent in adolescents. Data on adolescents' experiences with their disease and on their expectations for the future, however, is scarce. Patients of a university hospital aged 12 to 17 with epilepsy or bronchial asthma were interviewed based on a questionnaire. Forty-five patients with epilepsy and 47 with bronchial asthma were interviewed. Adolescents with epilepsy felt more impaired by their disease (median 2.5; Q25/Q75 0.75/3.0; 6-level Likert scales: 0 = not at all, 5 = very strong) than those with asthma (1.0; 0/3.0; p = 0.017). Seventy-nine patients (85.9%) had never used the Internet to gain information about their disease. Adolescents with epilepsy felt more limited in their career possibilities by their disease (2.0; 0/4.0) than those with asthma (0; 0/2.0; p = 0.001) and had a higher level of concern about passing their disease on to their children (3.0; 0/4.0) than their peers with asthma (1.5; 1.5/3.0; p = 0.016). Girls with epilepsy were more anxious (4.0; 0.5/5.0) than girls with asthma (0; 0/4.0) about complications of the disease regarding pregnancy (p = 0.019). CONCLUSION: As well adolescents with epilepsy as with asthma described limitations of their daily life and concerns about the future. What is Known: • Epilepsy and bronchial asthma are frequent chronic diseases in adolescents. • Those diseases can affect psychosocial development. What is New: • Adolescents with epilepsy and bronchial asthma described a high burden of their disease, and most adolescents had not used the Internet to inform themselves on their disease. • Especially adolescents with epilepsy fear limitations in their job possibilities, inheritance of their disease and complications in their prospective pregnancy.

How do Parents Perceive the Initial Medical Consultation on their Child's Developmental Disorder?

BACKGROUND: A developmental disorder of a child has a major impact on the affected families' lives. However, data about the parents' perception of the revealing of the diagnosis is scarce. PATIENTS AND METHODS: Parents of children with developmental disorder treated as outpatients in a university hospital were interviewed about the initial medical consultation concerning the diagnosis of their child. RESULTS: Parents of 210 children agreed to take part in the study. 35/210 (17%) had to be excluded from the study as they were not able to remember the initial medical consultation, or claimed there was either no initial medical consultation or they did not attend it. The diagnosis of developmental disorder was made in median 4 months (Q25/Q75: 0/12; min/max: 0/63) after the parents had noticed the first symptoms. According to the parents, options to support the development of the child were the most frequently addressed topic in the initial medical consultation (119/175, 68%). Some parents wished more empathy (19/175, 11%), and less medical terminology (12/175, 7%). 114/175 (65%) of parents rated the initial medical consultation as "very good" or "good". After their initial medical consultation, 66/175 (38%) of the parents had open questions mainly concerning the prognosis of the disease. Sources of information that were used after the consultation were most often the treating physician (150/175, 86%) and the internet (133/175, 76%). CONCLUSION: Generally, parents perceive the initial medical consultation on the developmental disorder of their child well. Nevertheless, many parents state that they had unanswered questions after the consultation. The internet is one of the main sources parents use to answer those questions.