Manningschmitt2250

DISCUSSION Much research to date has focussed on the development and validation of devices for PWE and standards for testing. Fewer studies deal with the needs and experiences of PWE with regard to the use of such equipment. The development of these devices needs to ensure patient comfort and acceptability. In addition, there is a need to canvas the views of family, caregivers, and primary care providers on the usability of epilepsy aids and equipment. CONCLUSION Further person-centered research is needed in assessing the need for and usability of aids and equipment for the management of epilepsy. AZD7648 BACKGROUND The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers. METHODS A French language on-line survey was distributed (October 2014-January 2015) for completion by caregivers of patients aged 2 per week for 16.1% of patients, 1-8 per month for 55.2% and  less then  1 per month for 28.7%; tonic-clonic and myoclonic were the most frequent seizure types. Patients showed various degrees of intellectual disability and DS had a high impact on concentration and school learning in 70.1% and 80.5%. In addition, patients showed appetite disorders in 73.6%, sleep disorders in 72.4% and behavior disorders in 62.1%. Most parents were married (80.5%) with higher rates than the French general population (53.5%). Educational achievement and socio-professional categories for the parents were higher than observed in the French general population, while monthly net income was similar. Preparation of medication was generally done by the mother and father (46.0% of patients) or the mother only (37.9%). Most caregivers reported very low or no difficulty with treatment preparation and low or no risk of error. Parents typically spent less then 30 min per day on treatment preparation and administration and around 4 h per week for attending therapy appointments. Although most patients and parents were perceived to have good general health, mothers had a worse perception of their own general health than fathers. Compared with fathers, mothers reported a greater impact of caring for a child with DS on their social life, relationships with family and friends, time and energy, and professional life. CONCLUSION Families caring for a child with DS experience considerable social and economic impact, with an apparent greater burden of care on the mother than the father. PURPOSE The purpose of this study was to assess long-term psychosocial outcomes of anti-N-methyl-d-aspartate (NMDA) receptor encephalitis (anti-NMDARE). METHODS Adolescents and adults with self-reported anti-NMDARE were invited to complete an online survey distributed by relevant patient organizations. Demographic and clinical information was collected, including the diagnoses initially given for anti-NMDARE symptoms and posthospital care received. Patient-Reported Outcomes Measurement Information System (PROMIS) Psychosocial Impact Illness - Negative short form (Negative PSII) was administered to assess psychosocial outcome of anti-NMDARE. Associations between clinical factors and psychosocial outcomes were evaluated. RESULTS Sixty-one individuals with anti-NMDARE age 15 years and above participated. Mean age was 33.7 years (standard deviation [SD] 12.8), and participants were predominantly female (90.2%, n = 55). Mean T-score on PROMIS Negative PSII was 60.7, >1 SD higher (worse psychosocial function) than that of the provided normalized sample enriched for chronic illness (50, SD 10). Initial misdiagnosis of anti-NMDARE symptoms was associated with decreased odds (odds ratio [OR] 0.11, p  less then  0.05), and follow-up with a psychiatrist after hospitalization with increased odds (OR 8.46, p  less then  0.05), of return to work/school after illness. Younger age of symptom onset and presence of ongoing neuropsychiatric issues were predictive of worse Negative PSII scores (p  less then  0.05). CONCLUSION Individuals with anti-NMDARE demonstrate poor psychosocial outcomes, yet there are no current standards for long-term assessment or management of such symptoms in this population. These findings highlight the need for use of more comprehensive outcome measures that include assessment of psychosocial function and the importance of developing interventions that address this domain for individuals with anti-NMDARE. Ambient air pollution, namely exposure to air particulate matter (PM), has been shown to be connected with a number of adverse health effects. At least part of the effects can be caused by organic pollutant mixtures associated with PM, which can elicit a wide range of specific toxic potentials. These potentials could be affected by seasonal variation of pollutant mixtures and PM size fraction. To examine this, six size subfractions of PM10 were collected at rural and urban site in the Czech Republic in a year-long sampling campaign. The samples were assessed for aryl hydrocarbon (AhR)-mediated activity, estrogenicity and anti-androgenicity using mammalian cell models. The concentrations of detected toxic potentials differed among seasons. The greatest levels were observed in samples collected during winter when AhR-mediated effects and estrogenicity were at least 10-times greater than in summer. While the observed potentials were mostly less pronounced in samples from rural area, during winter, their AhR-mediated activity was twice as great as at the urban site. This was probably caused by the low-quality of fuel used for heating at the rural site. Assessed toxic potentials were associated mainly with PM size fractions with lesser aerodynamic diameters ( less then 1 μm). Toxic potentials were compared with data from chemical analyses covering 102 chemicals from different pollutant groups to model their contribution to the observed effects. For AhR-mediated activity, chemical analyses explained on average 44% of the effect and the main identified effect-drivers were polycyclic aromatic hydrocarbons. For estrogenicity and anti-androgenicity, detected chemicals were able to explain on average less than 1.6% and 11% of the potentials, with their highest explicability reaching 13% and 57%, respectively. This was affected by the lack of data on specific toxic potency of some detected air pollutants, but also indicates a possible role of further not analyzed chemicals in these effects.