Publications by authors named "U Bettendorf"
Article Synopsis
- The study aimed to explore how caregivers of patients with Dravet syndrome (DS) monitor critical incidents and their knowledge about sudden unexpected death in epilepsy (SUDEP).
- It involved a cross-sectional survey in Germany that collected data through questionnaires and diaries from 108 patients and their 82 caregivers, revealing that 75.9% of caregivers used monitoring devices regularly, including pulse oximeters and baby monitors.
- While caregivers were mostly informed about SUDEP and engaged in various nighttime interventions, only a small percentage received formal resuscitation training, highlighting a potential gap in emergency preparedness.
Sleep quality, anxiety, symptoms of depression, and caregiver burden among those caring for patients with Dravet syndrome: a prospective multicenter study in Germany.
Orphanet J Rare Dis
April 2023
Article Synopsis
- This study examined sleep quality among caregivers of patients with Dravet syndrome (DS) and explored how mental health issues and caregiver burden impact their sleep.
- Involving 108 questionnaires and 82 diaries, results indicated that a significant majority (76.9%) of caregivers reported poor sleep quality, and many experienced high levels of anxiety (61.8%) and depression (50.9%).
- The findings suggest that caregiver anxiety and patients' sleep disturbances are significant factors influencing sleep quality, highlighting the need for a comprehensive support system addressing both patients' and caregivers' mental health and sleep needs.
Article Synopsis
- - Dravet syndrome (DS) is a rare condition that affects both seizure frequency and overall health-related quality of life (HRQoL), prompting a need for a more comprehensive measure of treatment effectiveness beyond just seizures.
- - This study combined survey data on symptoms and care needs from 75 pediatric DS patients to create composite scores reflecting physical, psychosocial, and care aspects of the syndrome, finding strong links between these scores and various seizure measures.
- - While strong associations emerged between symptom severity and seizure frequency, only behavioral issues and severe seizures significantly impacted HRQoL, indicating a need for better tools in evaluating the overall patient experience in DS.
Objective: This study aimed to measure health-related quality of life (HRQOL) in children and adolescents with tuberous sclerosis complex (TSC) and quality of life (QOL) and depressive symptoms among caregivers.
Methods: Adequate metrics were used to assess HRQOL in children and adolescents with TSC (4-18 years, KINDL) as well as QOL (EQ-5D) and symptoms of depression (BDI-II) among caregivers. Predictors for reduced HRQOL and depressive symptoms were identified by variance analysis, ordinal regression, and bivariate correlation.
Background: The approval of everolimus (EVE) for the treatment of angiomyolipoma (2013), subependymal giant cell astrocytoma (2013) and drug-refractory epilepsy (2017) in patients with tuberous sclerosis complex (TSC) represents the first disease-modifying treatment option available for this rare and complex genetic disorder.
Objective: The objective of this study was to analyse the use, efficacy, tolerability and treatment retention of EVE in patients with TSC in Germany from the patient's perspective.
Methods: A structured cross-age survey was conducted at 26 specialised TSC centres in Germany and by the German TSC patient advocacy group between February and July 2019, enrolling children, adolescents and adult patients with TSC.