Epilepsy in children and adolescents: Disease concepts, practical knowledge, and coping

Pauschek, Josefine; Bernhard, Matthias K.; Syrbe, Steffen; Nickel, Petra; Neininger, Martina Patrizia; Merkenschlager, Andreas; Kieß, Wieland; Bertsche, Thilo; Bertsche, Astrid

doi:10.1016/j.yebeh.2016.03.033

Cited by 30 publications

(30 citation statements)

References 24 publications

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“…Paediatricians used more visual analogies, describing epilepsy as a thunderstorm or an electrical short-circuit taking place in the brain. A recent study showed that 25% of children diagnosed with epilepsy could not name their disease correctly (Pauschek et al, 2016), leaving them in need of more explanation. This is the responsibility of paediatricians and general practitioners.…”

Section: Discussionmentioning

confidence: 99%

“…This is the responsibility of paediatricians and general practitioners. As a number of children with epilepsy already feel worse off than healthy children (Pauschek et al, 2016), adverse drug events, such as challenging behaviour, can increase the difficulties associated with social integration. In a German study, 3% of high school students even stated that they would not want to be friends with Physicians' experiences of epilepsy a person suffering from epilepsy (Jansen et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…Several studies have explored the extent of knowledge and experiences regarding these issues. These have focussed on teachers (Dumeier et al, 2015;2017a;2017b), parents (Lewis et al, 2010;Bertsche et al, 2013;Spindler et al, 2017), patients (Lewis et al, 2010;Bertsche et al, 2013;Spindler et al, 2017), patients (Lewis et al, 2010;Pauschek et al, 2016;Kadel et al, 2018), or the public (Fong and Hung, 2002;Kartal and Akyıldız, 2016;Jansen et al, 2017). A recent study investigated the educational needs of physicians working in paediatric epileptology with emphasis on neurologists and neuropaediatricians (Murray et al, 2018).…”

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confidence: 99%

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Epilepsy: a cross‐sectional study of paediatricians and general practitioners on their experiences, knowledge and handling of the disease

Schnabel¹,

Neininger

Bernhard³

et al. 2019

Epileptic Disorders

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Aims : Epilepsy is a life‐changing disease, and patients with epilepsy may face a number of issues. Paediatricians and general practitioners are often the first to be asked for advice. This cross‐sectional study was performed to gain information on the knowledge and experiences of paediatricians and general practitioners on epilepsy. Methods : From September 2015 to July 2017, paediatricians and general practitioners in Leipzig, Germany, were asked to take part in a face‐to‐face interview. Results : Overall, 40 paediatricians and 60 general practitioners participated in the study. A total of 99/100 (99%) kept emergency medication available and 96/100 (96%) would administer it during a seizure. Also, 40/40 (100%) of the paediatricians and 34/60 (57%) of the general practitioners recommended that non‐professionals should administer emergency medication, and 18/40 (45%) of the paediatricians and 35/60 (58%) of the general practitioners would put an object in the patient's mouth during a seizure. With regards to safety precautions, paediatricians mentioned the risks associated with swimming (30/40; 75%) and the potential of falling from a height (23/40; 58%), whereas general practitioners focused on being around vehicles including driving regulations (43/60; 72%). Only 5/60 (8%) of the general practitioners advised that precautions should be taken during swimming. Fatigue/exhaustion was the most common adverse drug event associated with long‐term anticonvulsive therapy mentioned by paediatricians (13/40; 33%) and general practitioners (27/60; 45%). Of all the participants, 23/100 (23%) recommended epilepsy training programmes for patients and families, however, none were able to name a specific programme. Conclusion : Nearly half of the general practitioners did not recommend the use of rescue medication by non‐professionals. This measure, however, can prevent the occurrence of prolonged non‐treatable seizures. Both paediatricians and general practitioners should bear in mind that placing an object in the mouth during a seizure should be avoided due to the risk of additional injury. To reduce the risk of drowning, physicians should recommend safety precautions during swimming. Information on epilepsy training programmes for patients and families should be diffused to all physicians taking care of patients with epilepsy.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

See 1 more Smart Citation

Epilepsy: a cross‐sectional study of paediatricians and general practitioners on their experiences, knowledge and handling of the disease

Schnabel¹,

Neininger

Bernhard³

et al. 2019

Epileptic Disorders

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“…Für den behandelnden Arzt sollte es von besonderem Interesse sein, die Einschätzung der betroffenen Kinder im Hinblick auf ihre Epilepsie-Erkrankung zu berücksichtigen [46]. Von 84 befragten Kindern und Jugendlichen zwischen 6-18 Jahren konnten zwar 75 % den Namen ihrer Erkrankung zutreffend benennen.…”

Section: Arzneimittelverschreibung -Selbsteinschätzung Und Wissen Pädunclassified

“…Aktuelle Studien [46] lassen die Schlussfolgerung zu, dass auch Kinder und Jugendliche selbst verstärkt Verantwortung für ihre eigene Arzneimitteltherapie übernehmen sollten. Die Kombination aus Schulungs-und Trainingseinheiten sowie bedarfsgerechter Arzneimittelinformation zeigte sich in [58] als effektiv, um Anwendungsfehlern von Patienten und Eltern im Bereich der pädiatrischen Hämatoonkologie vorzubeugen.…”

Section: Arzneimittelanwendung -Eltern Bereits Stationär In Die Arzneunclassified

Interdisziplinäre Konzepte von Pädiatrie und Klinischer Pharmazie zur Optimierung der Antikonvulsivatherapie

et al. 2017

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Expertise in a variety of fields is required for the diagnostic process of epilepsies in children and adolescents as well as for their treatment with anticonvulsants. Patients benefit in the process from the cooperation of different health care professionals. It is of critical importance for risks to be minimised and for the efficacy shown in controlled clinical trials to be maintained in routine conditions. In the first instance, drug prescription procedures, including the choice of anticonvulsants and combinations of drugs and dosing, have to be considered. The administration of drugs has, of course, also to be taken into account. Only if patients are given their anticonvulsants appropriately, the intended success of the therapy can be accomplished. Strategies aimed at improving drug administration have to be directed not only at nurses but also at parents, children and adolescents themselves, as well as caregivers in schools and children's day-care facilities. By providing theoretical teaching, practical training, and routinely including pharmacists in the therapeutic team, drug-related problems that may result in limited effectiveness and increased risks are prevented. As a result, drug (therapy) safety is not only qualitatively improved, but the degree of participation and quality of life of patients and families is improved as well.

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Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

et al. 2023

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ObjectiveSelf‐stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self‐stigma have low self‐esteem and are less likely to engage in treatment behavior. The Epilepsy Self‐Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity.MethodsWe created the German version of ESSS (ESSS‐G) based on the original Japanese version. From May to October 2022, we recruited out‐ and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self‐Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI‐E), Generalized Anxiety Disorder 7 (GAD‐7), Epilepsy Knowledge Scale, and items on “overall quality of life (QOL)” and “overall health” (items from QOLIE‐31).ResultsOne hundred twenty‐eight of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD‐7, r = 0.54, P < 0.001) and depression (NDDI‐E, r = 0.45, P < 0.001), lower self‐esteem (RSES, r = −0.41, P < 0.001), overall QOL (r = −0.40, P < 0.001), and overall health (r = −0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self‐stigma.SignificanceThe German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self‐stigma and conducting intercultural comparisons of epilepsy self‐stigma.

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Epilepsy in children and adolescents: Disease concepts, practical knowledge, and coping

Cited by 30 publications

References 24 publications

Epilepsy: a cross‐sectional study of paediatricians and general practitioners on their experiences, knowledge and handling of the disease

Epilepsy: a cross‐sectional study of paediatricians and general practitioners on their experiences, knowledge and handling of the disease

Interdisziplinäre Konzepte von Pädiatrie und Klinischer Pharmazie zur Optimierung der Antikonvulsivatherapie

Assessment of self‐stigma in epilepsy: Validation of the German version Epilepsy Self‐Stigma Scale (ESSS‐G)

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