Seizure disorders and developmental disorders: impact on life of affected families—a structured interview

Spindler, Ulrike Petra; Hotopp, Lena Charlott; Bach, Vivien Angela; Hornemann, Frauke; Syrbe, Steffen; Andreas, Anna; Merkenschlager, Andreas; Kieß, Wieland; Bernhard, Matthias K.; Bertsche, Thilo; Neininger, Martina Patrizia; Bertsche, Astrid

doi:10.1007/s00431-017-2958-0

Cited by 34 publications

(29 citation statements)

References 28 publications

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“…[10,11,17] Comorbid conditions may also contribute to caregiver burden and impaired QoL as the caregiver may devote more time, energy, and i nancial resources to the care of the patient. [24,25,33] Nevertheless, in the present study, younger age, treatment duration >5 years, polytherapy and comorbidities were not signii cantly associated with caregiver burden. A larger sample of participants may help draw more conclusive evidence to prove this association among Filipino patients.…”

Section: Caregiver Burden and Qol Of Caregiverscontrasting

confidence: 69%

“…They may even develop prejudice, negative attitude, and psychological distress like depression and anxiety. [24] When seizure is associated with developmental disorder, parents report more constraints compared to those with seizure alone. [24] Furthermore, these children with developmental disorders may become dependent life-long upon their caregivers, hence the caregiving process does not decrease.…”

Section: Introductionmentioning

confidence: 99%

“…[24] When seizure is associated with developmental disorder, parents report more constraints compared to those with seizure alone. [24] Furthermore, these children with developmental disorders may become dependent life-long upon their caregivers, hence the caregiving process does not decrease. [25] Caregiver burden and impairment in quality of life remains to be an unmet need in epilepsy care in the Philippines.…”

Section: Introductionmentioning

confidence: 99%

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Burden of Care of Filipino Children with Epilepsy and its Impact on Quality of Life, Anxiety and Depressive Symptoms among Caregivers

Torres¹,

Arca-Cabradilla²,

Sy³

et al. 2019

jmust

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Background Caregiver burden and its impact on the quality of life is as important as determining the quality of life of children with epilepsy as these factors inl uence each other as well as the outcome of these children. Objectives The primary objective of the study was to determine the association between caregiver burden and quality of life as well as anxiety and depressive symptoms among caregivers of Filipino children with epilepsy. Also, the study aimed to determine the prevalence rate of caregiver burden, impaired quality of life, anxiety, and depressive symptoms in an ambulatory care setting. Methodology In this cross-sectional survey, adult caregivers accompanying their pediatric patients with epilepsy at a single tertiary center were recruited. Sociodemographic and clinical data were collected. The participants completed questionnaires for caregiver burden, quality of life, anxiety, and depressive symptoms. Results Fifty-three caregivers participated with a mean age of 38 years. Most of them were females, married, unemployed, and at least college level. The mean age of their patients was 9.4 years and 71.7% of patients were on a single anti-epileptic drug. Lower educational level was less likely associated with caregiver burden. Although impaired quality of life and depressive symptoms were more likely associated with caregiver burden, this association did not reach statistical signii cance. Conclusion The prevalence rate of caregiver burden, impaired quality of life, anxiety, and depressive symptoms were 24.5%, 22.6%, 28.3%, and 9.4% respectively, among caregivers of Filipino children with epilepsy at a single tertiary center.

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Section: Caregiver Burden and Qol Of Caregiverscontrasting

confidence: 69%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Burden of Care of Filipino Children with Epilepsy and its Impact on Quality of Life, Anxiety and Depressive Symptoms among Caregivers

Torres¹,

Arca-Cabradilla²,

Sy³

et al. 2019

jmust

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“…Epilepsy can have a negative impact on the quality of life of children and adolescents that can be aggravated by a developmental disorder and further aggravated by ADEs [24]. The results of the present study showed a high burden of experienced ADEs with a negative impact especially on the emotional situation, on school performance, and on favorite leisure activities.…”

Section: Burden Of Experienced Adesmentioning

confidence: 47%

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

et al. 2020

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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.

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“…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).…”

mentioning

confidence: 99%

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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Seizure disorders and developmental disorders: impact on life of affected families—a structured interview

Cited by 34 publications

References 28 publications

Burden of Care of Filipino Children with Epilepsy and its Impact on Quality of Life, Anxiety and Depressive Symptoms among Caregivers

Burden of Care of Filipino Children with Epilepsy and its Impact on Quality of Life, Anxiety and Depressive Symptoms among Caregivers

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

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

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