Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.Peer reviewe

Изменение уровня металлотионеинов, цинка и меди в плазме крови пациентов с хроническим лимфоцитарным лейкозом

   Изучена взаимосвязь между содержанием металлотионеинов, ионов меди и цинка в плазме периферической крови при хронических лимфоцитарных лейкозах (ХЛЛ) в зависимости от прогрессирования заболевания. Показано, что у пациентов с ХЛЛ при прогрессирующем заболевании, частичной и полной ремиссии значения отношений цинка к меди в плазме крови достоверно снижались по сравнению с аналогичными показателями, характерными для практически здоровых доноров. Установлено, что в плазме крови у пациентов с ХЛЛ при прогрессировании заболевания уменьшается уровень металлотионеинов по сравнению с другими исследуемыми группами, что говорит об обнаруженной нами сниженной функции цистеинсодержащих белков-металлотионинов. На основании полученных данных можно заключить, что отношение концентрации цинка к меди и уровень металлотионенинов в плазме периферической крови могут быть потенциальными диагностическими и прогностическими маркерами при терапии ХЛЛ.   The relationship between the content of metallothioneins, copper and zinc ions in peripheral blood plasma in chronic lymphocytic leukemia (CLL) depending on the disease progression was studied. It was shown that in patients with CLL in blood plasma with a progressive disease, partial and complete remission, the values of the zinc-to-copper ratios significantly decreased in comparison to similar indicators of practically healthy donors. It was established that in patients with CLL, the level of metallothioneins in blood plasma decreases with the disease progression compared to other studied groups, which indicates a reduced function of cysteine-containing metallothionein proteins. Based on the obtained data, it can be concluded that the zinc-to-copper concentration ratio and the level of metallothionenins in peripheral blood plasma are potential diagnostic and prognostic markers in chronic leukemia.   Изучена взаимосвязь между содержанием металлотионеинов, ионов меди и цинка в плазме периферической крови при хронических лимфоцитарных лейкозах (ХЛЛ) в зависимости от прогрессирования заболевания. Показано, что у пациентов с ХЛЛ при прогрессирующем заболевании, частичной и полной ремиссии значения отношений цинка к меди в плазме крови достоверно снижались по сравнению с аналогичными показателями, характерными для практически здоровых доноров. Установлено, что в плазме крови у пациентов с ХЛЛ при прогрессировании заболевания уменьшается уровень металлотионеинов по сравнению с другими исследуемыми группами, что говорит об обнаруженной нами сниженной функции цистеинсодержащих белков-металлотионинов. На основании полученных данных можно заключить, что отношение концентрации цинка к меди и уровень металлотионенинов в плазме периферической крови могут быть потенциальными диагностическими и прогностическими маркерами при терапии ХЛЛ

Autistic Adult Services Availability, Preferences, and User Experiences: Results From the Autism Spectrum Disorder in the European Union Survey

There is very little knowledge regarding autistic adult services, practices, and delivery. The study objective was to improve understanding of current services and practices for autistic adults and opportunities for improvement as part of the Autism Spectrum Disorder in the European Union (ASDEU) project. Separate survey versions were created for autistic adults, carers of autistic adults, and professionals in adult services. 2,009 persons responded to the survey and 1,085 (54%) of them completed at least one of the services sections: 469 autistic adults (65% female; 55% 50% responded "don't know"). Five of seven residential services features recommended for autistic adults were experienced by <50% of adults. The knowledge of good local services models that work well for autistic adults was generally low across all services areas. The variation in services experiences and perceptions reported by autistic adults, carers, or professionals underscore the need to query all groups for a complete picture of community services availability and needs. The results showed areas for potential improvement in autistic adult services delivery in the EU to achieve recommended standards

EQ-5D in Central and Eastern Europe : 2000-2015

Objective: Cost per quality-adjusted life year data are required for reimbursement decisions in many Central and Eastern European (CEE) countries. EQ-5D is by far the most commonly used instrument to generate utility values in CEE. This study aims to systematically review the literature on EQ-5D from eight CEE countries. Methods: An electronic database search was performed up to July 1, 2015 to identify original EQ-5D studies from the countries of interest. We analysed the use of EQ-5D with respect to clinical areas, methodological rigor, population norms and value sets. Results: We identified 143 studies providing 152 country-specific results with a total sample size of 81,619: Austria (n=11), Bulgaria (n=6), Czech Republic (n=18), Hungary (n=47), Poland (n=51), Romania (n=2), Slovakia (n=3) and Slovenia (n=14). Cardiovascular (20%), neurologic (16%), musculoskeletal (15%) and endocrine/nutritional/metabolic diseases (14%) were the most frequently studied clinical areas. Overall 112 (78%) of the studies reported EQ VAS results and 86 (60%) EQ-5D index scores, of which 27 (31%) did not specify the applied tariff. Hungary, Poland and Slovenia have population norms. Poland and Slovenia also have a national value set. Conclusions: Increasing use of EQ-5D is observed throughout CEE. The spread of health technology assessment activities in countries seems to be reflected in the number of EQ-5D studies. However, improvement in informed use and methodological quality of reporting is needed. In jurisdictions where no national value set is available, in order to ensure comparability we recommend to apply the most frequently used UK tariff. Regional collaboration between CEE countries should be strengthened

Autistic Adult Health and Professional Perceptions of It: Evidence From the ASDEU Project

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups,Peer reviewe

Autistic adult diagnosis, co-occurring conditions and interventions: good practices, services gaps, areas for improvement

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Intervention Services for Autistic Adults: An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences

The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.Peer reviewe

Autistic adult health and professional perceptions of it:evidence from the ASDEU project

Abstract The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, &lt;20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services