Astrid Bertsche
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View article: Treatment evolution in spinal muscular atrophy: insights from the SMArtCARE registry
Treatment evolution in spinal muscular atrophy: insights from the SMArtCARE registry Open
Real world treatments for 5q-spinal muscular atrophy (SMA) have evolved rapidly following the sequential approval of three disease-modifying treatments (DMT): nusinersen, onasemnogene abeparvovec (OA) and risdiplam. The aim of this study w…
View article: Impact of meningoencephalitis and sepsis on delirium and subsequent neurological impairment in pediatric patients: a prospective proof-of-concept biomarker and EEG study
Impact of meningoencephalitis and sepsis on delirium and subsequent neurological impairment in pediatric patients: a prospective proof-of-concept biomarker and EEG study Open
To assess the incidence and severity of delirium and subsequent neurological impairment in pediatric intensive care unit (PICU) patients with meningoencephalitis (ME) and sepsis. Prospective study enrolling PICU patients with sepsis or men…
View article: Perspectives of pediatric patients with inborn errors of metabolism on long-term treatment and metabolic emergency management
Perspectives of pediatric patients with inborn errors of metabolism on long-term treatment and metabolic emergency management Open
Background Long-term treatment and emergency management are essential in most pediatric patients with inborn errors of metabolism (IEM). In routine care, these patients receive age-appropriate education to support adherence and self-manage…
View article: A Regional Tele-Paediatric Network (RTP-Net) in the northeast of Germany—results of an implementation study
A Regional Tele-Paediatric Network (RTP-Net) in the northeast of Germany—results of an implementation study Open
Background Mutual support of paediatric hospital departments through a telemedical network can support paediatric care particularly in rural areas with structural deficits. Using a participatory approach, a Regional Tele-Paediatric Network…
View article: Quality of Life of Children and Adolescents with Epilepsy Compared to Their Healthy Peers: A Cross-Sectional Study
Quality of Life of Children and Adolescents with Epilepsy Compared to Their Healthy Peers: A Cross-Sectional Study Open
Epilepsy significantly impacts the health-related quality of life (HRQoL) of children and adolescents (CaA). This study aimed to assess HRQoL in pediatric epilepsy patients compared to their healthy peers, using both self- and proxy-report…
View article: How important is the physician in an era of digitalization and alternative information sources? A survey among parents of children with developmental disorders
How important is the physician in an era of digitalization and alternative information sources? A survey among parents of children with developmental disorders Open
A developmental disorder can lead to major issues in daily life of affected families. As physicians’ time is limited, parents often look for alternative sources of information. We aimed at investigating parents’ preferences and judgement r…
View article: Medication-related perceptions of children and adolescents with severe asthma and moderate-to-severe atopic dermatitis: a non-interventional exploratory study
Medication-related perceptions of children and adolescents with severe asthma and moderate-to-severe atopic dermatitis: a non-interventional exploratory study Open
Background Severe asthma and moderate-to-severe atopic dermatitis can significantly impact the lives of children and adolescents. However, real-world data on pediatric patients’ perceptions of their medication are limited. Methods This non…
View article: Treatment modifications of antiseizure medications in children due to adverse drug reactions: The parents’ perspective
Treatment modifications of antiseizure medications in children due to adverse drug reactions: The parents’ perspective Open
One-in-ten parents desired to modify current ASM treatment due to ADRs, and almost two thirds reported actual ADR-related modifications of previous ASMs. As the same ADRs were reported for different ASMs, those ADRs may not be preventable …
View article: What extent of adverse drug reactions seems acceptable for what degree of seizure reduction in paediatric patients with epilepsy?—An exploratory study on the parents' perspective
What extent of adverse drug reactions seems acceptable for what degree of seizure reduction in paediatric patients with epilepsy?—An exploratory study on the parents' perspective Open
Purpose We aimed to explore the perspectives of parents of children with epilepsy regarding the extent of adverse drug reactions (ADRs) of antiseizure medications (ASMs) they are willing to accept for a certain degree of seizure reduction.…
View article: Experiences of people with epilepsy in their professional development and daily working life: An exploratory study
Experiences of people with epilepsy in their professional development and daily working life: An exploratory study Open
According to self-reports, one of the main challenges faced by adult PWE is the deterioration of work performance due to perceived adverse drug reactions. They also perceived a major mental strain regarding their professional future becaus…
View article: No substantial neurocognitive impact of COVID-19 across ages and disease severity: a multicenter biomarker study of SARS-CoV-2 positive and negative adult and pediatric patients with acute respiratory tract infections
No substantial neurocognitive impact of COVID-19 across ages and disease severity: a multicenter biomarker study of SARS-CoV-2 positive and negative adult and pediatric patients with acute respiratory tract infections Open
Background Compared to intensive care unit patients with SARS-CoV-2 negative acute respiratory tract infections, patients with SARS-CoV-2 are supposed to develop more frequently and more severely neurologic sequelae. Delirium and subsequen…
View article: The impact of a child’s inborn error of metabolism: the parents’ perspectives on restrictions, discrimination, family planning, and emergency management
The impact of a child’s inborn error of metabolism: the parents’ perspectives on restrictions, discrimination, family planning, and emergency management Open
Background To investigate the impact of children’s inborn error of metabolism (IEMs) on the children’s and their parents’ lives from the parents’ perspective. We focused on disease-related restrictions in various issues of daily life, expe…
View article: A multicenter, matched case–control analysis comparing burden of illness among patients with tuberous sclerosis complex related epilepsy, generalized idiopathic epilepsy, and focal epilepsy in Germany
A multicenter, matched case–control analysis comparing burden of illness among patients with tuberous sclerosis complex related epilepsy, generalized idiopathic epilepsy, and focal epilepsy in Germany Open
Background Depending on the underlying etiology and epilepsy type, the burden of disease for patients with seizures can vary significantly. This analysis aimed to compare direct and indirect costs and quality of life (QoL) among adults wit…
View article: Early identification and awareness of child abuse and neglect among physicians and teachers
Early identification and awareness of child abuse and neglect among physicians and teachers Open
Background Child abuse and neglect (CAN) causes enormous suffering for those affected. Objective The study investigated the current state of knowledge concerning the recognition of CAN and protocols for suspected cases amongst physicians a…
View article: Authorized or Off-Label Use? A Structured Analysis of Summaries of Product Characteristics with Regard to Authorization in Pediatrics
Authorized or Off-Label Use? A Structured Analysis of Summaries of Product Characteristics with Regard to Authorization in Pediatrics Open
For about a quarter of all indications, no or only ambiguous information was available for pediatric patients. The measures initiated in recent years to increase pediatric-specific information in SmPCs should be intensified in order to imp…
View article: How Intuitive Is the Administration of Pediatric Emergency Medication Devices for Parents? Objective Observation and Subjective Self-Assessment
How Intuitive Is the Administration of Pediatric Emergency Medication Devices for Parents? Objective Observation and Subjective Self-Assessment Open
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 t…
View article: How do children with focal epilepsies perceive the moment they realize that they are about to have a seizure? A pilot study
How do children with focal epilepsies perceive the moment they realize that they are about to have a seizure? A pilot study Open
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 fo…
View article: Complementary and alternative medicine (CAM) is frequently used by parents for the treatment of functional constipation in children
Complementary and alternative medicine (CAM) is frequently used by parents for the treatment of functional constipation in children Open
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,…
View article: Parents’ Perceptions Regarding Their Children’s Medications and Expert-Assessed Drug-Related Problems in Pediatric Patients with Inborn Errors of Metabolism
Parents’ Perceptions Regarding Their Children’s Medications and Expert-Assessed Drug-Related Problems in Pediatric Patients with Inborn Errors of Metabolism Open
We aimed to explore parents’ perceptions of their children’s medication use for inborn errors of metabolism (IEM), including the importance of medication intake, potential complications, and concerns about adverse drug reactions (ADR). Add…
View article: Critical incidents, nocturnal supervision, and caregiver knowledge on <scp>SUDEP</scp> in patients with Dravet syndrome: A prospective multicenter study in Germany
Critical incidents, nocturnal supervision, and caregiver knowledge on <span>SUDEP</span> in patients with Dravet syndrome: A prospective multicenter study in Germany Open
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 epileps…
View article: Assessing Parental Competence and Self-Ratings in Management of Pediatric Type 1 Diabetes and Emergency Glucagon Administration—An Exploratory Observational Study
Assessing Parental Competence and Self-Ratings in Management of Pediatric Type 1 Diabetes and Emergency Glucagon Administration—An Exploratory Observational Study Open
Background: Parents of pediatric patients with type I diabetes require competence in hypoglycemia management and skills in glucagon administration to deal with potentially life-threatening severe hypoglycemia. We aimed to compare parents’ …
View article: Sleep quality, anxiety, symptoms of depression, and caregiver burden among those caring for patients with Dravet syndrome: a prospective multicenter study in Germany
Sleep quality, anxiety, symptoms of depression, and caregiver burden among those caring for patients with Dravet syndrome: a prospective multicenter study in Germany Open
Background This study measured sleep quality among caregivers of patients with Dravet syndrome (DS) and assessed the impacts of mental health problems and caregiver burden on sleep quality. Methods This multicenter, cross-sectional study o…
View article: Intensive care drug therapy and its potential adverse effects on blood pressure and heart rate in critically ill children
Intensive care drug therapy and its potential adverse effects on blood pressure and heart rate in critically ill children Open
Background Owing to complex treatment, critically ill children may experience alterations in their vital parameters. We investigated whether such hemodynamic alterations were temporally and causally related to drug therapy. Methods In a un…
View article: Pharmacoepidemiological Analysis of Oral Contraceptive Use in Adolescents in a German Longitudinal Cohort Study
Pharmacoepidemiological Analysis of Oral Contraceptive Use in Adolescents in a German Longitudinal Cohort Study Open
To assess the use of oral contraceptives (OC) in adolescents, using data from a longitudinal, population-based pediatric cohort study (LIFE Child). We also investigated associations between OC use and socioeconomic status (SES), and associ…
View article: Real‐world data on cannabidiol treatment of various epilepsy subtypes: A retrospective, multicenter study
Real‐world data on cannabidiol treatment of various epilepsy subtypes: A retrospective, multicenter study Open
Objective Cannabidiol (CBD) is approved for treatment of Dravet syndrome (DS), Lennox‐Gastaut syndrome (LGS), and tuberous sclerosis complex (TSC). Several studies suggest antiseizure effects also beyond these three epilepsy syndromes. Met…
View article: Interviews with children and adolescents with epilepsy or asthma about the situation of their healthy siblings
Interviews with children and adolescents with epilepsy or asthma about the situation of their healthy siblings Open
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 …