Ability and disability in autism spectrum disorder:a systematic literature review employing the International Classification of Functioning, Disability and Health-Children and Youth version

Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts con tained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research

Towards an ICF core set for ADHD : a worldwide expert survey on ability and disability

This is the second in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF and Children and Youth version, ICF-CY) core sets for attention deficit hyperactivity disorder (ADHD). The objective of this stage was to gather the opinions from international experts on which ability and disability concepts were considered relevant to functioning in ADHD. An email-based survey was carried out amongst international experts in ADHD. Relevant functional ability and disability concepts were extracted from their responses and linked to the ICF/-CY categories by two independent researchers using a standardised linking procedure. 174 experts from 11 different disciplines and 45 different countries completed the survey. Meaningful concepts identified in their responses were linked to 185 ICF/-CY categories. Of these, 83 categories were identified by at least 5 % of the experts and considered the most relevant to ADHD: 30 of these were related to Body functions (most identified: attention functions, 85 %), 30 to Activities and Participation (most identified: school education, 52 %), 20 to Environmental factors (most identified: support from immediate family, 61 %), and 3 to Body structures (most identified: structure of brain, 83 %). Experts also provided their views on particular abilities related to ADHD, naming characteristics such as highenergy levels, flexibility and resiliency. Gender differences in the expression of ADHD identified by experts pertained mainly to females showing more internalising (e.g. anxiety,low self-esteem) and less externalising behaviours (e.g. hyperactivity), leading to a risk of late- and under-diagnosis in females. Results indicate that the impact of ADHD extends beyond the core symptom domains, into all areas of life and across the lifespan. The current study in combination with three additional preparatory studies (comprehensive scoping review, focus groups, clinical study) will provide the scientific basis to define the ADHD ICF/-CY core sets for multi-purpose use in basic and applied research and every day clinical practice

Towards an ICF core set for ADHD:a worldwide expert survey on ability and disability

This is the second in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF and Children and Youth version, ICF-CY) core sets for attention deficit hyperactivity disorder (ADHD). The objective of this stage was to gather the opinions from international experts on which ability and disability concepts were considered relevant to functioning in ADHD. An email-based survey was carried out amongst international experts in ADHD. Relevant functional ability and disability concepts were extracted from their responses and linked to the ICF/-CY categories by two independent researchers using a standardised linking procedure. 174 experts from 11 different disciplines and 45 different countries completed the survey. Meaningful concepts identified in their responses were linked to 185 ICF/-CY categories. Of these, 83 categories were identified by at least 5 % of the experts and considered the most relevant to ADHD: 30 of these were related to Body functions (most identified: attention functions, 85 %), 30 to Activities and Participation (most identified: school education, 52 %), 20 to Environmental factors (most identified: support from immediate family, 61 %), and 3 to Body structures (most identified: structure of brain, 83 %). Experts also provided their views on particular abilities related to ADHD, naming characteristics such as high-energy levels, flexibility and resiliency. Gender differences in the expression of ADHD identified by experts pertained mainly to females showing more internalising (e.g. anxiety, low self-esteem) and less externalising behaviours (e.g. hyperactivity), leading to a risk of late- and under-diagnosis in females. Results indicate that the impact of ADHD extends beyond the core symptom domains, into all areas of life and across the lifespan. The current study in combination with three additional preparatory studies (comprehensive scoping review, focus groups, clinical study) will provide the scientific basis to define the ADHD ICF/-CY core sets for multi-purpose use in basic and applied research and every day clinical practice

The LHCb upgrade I

The LHCb upgrade represents a major change of the experiment. The detectors have been almost completely renewed to allow running at an instantaneous luminosity five times larger than that of the previous running periods. Readout of all detectors into an all-software trigger is central to the new design, facilitating the reconstruction of events at the maximum LHC interaction rate, and their selection in real time. The experiment's tracking system has been completely upgraded with a new pixel vertex detector, a silicon tracker upstream of the dipole magnet and three scintillating fibre tracking stations downstream of the magnet. The whole photon detection system of the RICH detectors has been renewed and the readout electronics of the calorimeter and muon systems have been fully overhauled. The first stage of the all-software trigger is implemented on a GPU farm. The output of the trigger provides a combination of totally reconstructed physics objects, such as tracks and vertices, ready for final analysis, and of entire events which need further offline reprocessing. This scheme required a complete revision of the computing model and rewriting of the experiment's software

A Systematic Review of Social Communication and Interaction Interventions for Patients with Autism Spectrum Disorder

Autism spectrum disorder (ASD) is currently not curable, but it may be malleable to varying degrees in response to different interventions to improve outcomes.We conducted a systematic review of interventions aimed at ameliorating social communication impairments in patients with ASD. This study was registered in the International Prospective Register of Systematic Reviews (no. CRD42013003780).We focused on the ASD interventions that are frequently applied in Swedish clincial practice to address ASD. To ensure stakeholder involvement, we also conducted two surveys with three major Swedish ASD interest organizations to assess perceived research priorities for ASD treatment. With the use of this rationale for selection, Early Intensive Behavioral Intervention [EIBI], Treatment and Education of Autistic and Related Communication Handicapped Children [TEACCH], social skills training groups, and interventions that involved significant others were reviewed. A bibliographic search was conducted via five databases: Medline, PubMed, PsycInfo, CINAHL, and ERIC. Identified articles were screened for relevance by two independent reviewers, who also assessed the risk of bias in randomized controlled trials using systematic checklists.A total of 7264 citations were identified as being published before February 2013, and 109 studies (18 of EIBI, 18 of social skills training, 4 of TEACCH, and 69 of interventions involving significant others) were included in the analysis. The included studies provided some support for the positive effects of each of the interventions; this is especially true if the most recently published research (March 2013 through August 2015) is considered, and a crude updated search for relevant randomized controlled trials was performed. The interventions that involve the significant others of individuals with ASD form a heterogenous area of treatment strategies that require subcategorization for future review.These findings provide preliminary support for treatments that are commonly used in clinical practice for the treatment of ASD in Sweden. However, larger and more rigorously designed and controlled studies are still needed before definitive conclusions regarding their effects can be made

Brief online-delivered cognitive-behavioural therapy for dysfunctional worry related to the covid-19 pandemic: A randomised trial

Introduction: Worries about the immediate and long-term consequences of the COVID-19 pandemic may for some individuals develop into pervasive worry that is disproportionate in its intensity or duration and significantly interferes with everyday life. Objective: The aim of this study was to investigate if a brief self-guided, online psychological intervention can reduce the degree of dysfunctional worry related to the COVID-19 pandemic and associated symptoms. Methods: 670 adults from the general Swedish general population reporting daily uncontrollable worry about COVID-19 and its possible consequences (e.g. illness, death, the economy, one’s family) were randomised (1:1 ratio) to a 3-week self-guided, online cognitive behavioural intervention targeting dysfunctional COVID-19 worry and associated symptoms, or a waiting list of equal duration. The primary outcome measure was a COVID-19 adapted version of the Generalised Anxiety Disorder 7-item scale assessed at baseline and weeks 1-3 (primary endpoint). Follow-up assessments were conducted one month after treatment completion. The trial was registered on ClinicalTrials.gov (NCT04341922) before inclusion of the first participant. Results: The main pre-specified intention-to-treat analysis indicated significant reductions in COVID-19-related worry for the intervention group compared to waiting list (=1.14, Z=9.27, p<.001), corresponding to a medium effect size (bootstrapped d=0.74 [95% CI; 0.58 to 0.90]). Improvements were also seen on all secondary measures, including mood, daily functioning, insomnia and intolerance of uncertainty. Participant satisfaction was high. No serious adverse events were recorded. Conclusions: A brief digital and easily scalable self-guided psychological intervention can significantly reduce dysfunctional worry and associated behavioural symptoms related to the COVID-19 pandemic

Effectiveness of behaviour therapy for children and adolescents with Tourette syndrome and chronic tic disorder in a real-world setting

Background: Treatment guidelines recommend behaviour therapy (BT) as the first-line intervention for patients with Tourette syndrome (TS) and chronic tic disorder (CTD). The efficacy of BT has been documented in randomised controlled trials (RCTs), but it is unclear to what extent these results are generalisable to real-world clinical settings, and whether the therapeutic gains are maintained long-term. Methods: In this naturalistic study, 74 young people with TS/CTD (aged 6 to 17) received BT (including psychoeducation, exposure with response prevention, habit reversal training or a combination of these treatments) at a specialist clinic in Stockholm, Sweden. Data were routinely collected at baseline, post-treatment, and at 3-, 6-, and 12-month follow-ups. Measures included the clinician-rated Yale Global Tic Severity Scale (YGTSS) and the Clinical Global Impression – Improvement scale (CGI-I), amongst others. Results: Tic severity and tic-related impairment (as measured by the YGTSS) improved significantly after treatment, with large within-group effect sizes (d=1.03 for the YGTSS Total Tic Severity Score, and d=1.37 for the YGTSS Impairment Score). At post-treatment, 57% of the participants were classified as treatment responders according to the CGI-I. Both tic severity and tic-related impairment continued to improve further through the follow-up, with 75% of the participants being rated as responders 12 months after the end of treatment. Significant improvements were also observed across a range of secondary measures. Conclusions: BT is an effective and durable treatment for young people with TS/CTD in a real-world clinical setting, with effects comparable to those reported in RCTs

In search of environmental risk factors for obsessive-compulsive disorder : study protocol for the OCDTWIN project

Background: The causes of obsessive-compulsive disorder (OCD) remain unknown. Gene-searching efforts are well underway, but the identification of environmental risk factors is at least as important and should be a priority because some of them may be amenable to prevention or early intervention strategies. Genetically informative studies, particularly those employing the discordant monozygotic (MZ) twin design, are ideally suited to study environmental risk factors. This protocol paper describes the study rationale, aims, and methods of OCDTWIN, an open cohort of MZ twin pairs who are discordant for the diagnosis of OCD. Methods: OCDTWIN has two broad aims. In Aim 1, we are recruiting MZ twin pairs from across Sweden, conducting thorough clinical assessments, and building a biobank of biological specimens, including blood, saliva, urine, stool, hair, nails, and multimodal brain imaging. A wealth of early life exposures (e.g., perinatal variables, health-related information, psychosocial stressors) are available through linkage with the nationwide registers and the Swedish Twin Registry. Blood spots stored in the Swedish phenylketonuria (PKU) biobank will be available to extract DNA, proteins, and metabolites, providing an invaluable source of biomaterial taken at birth. In Aim 2, we will perform within-pair comparisons of discordant MZ twins, which will allow us to isolate unique environmental risk factors that are in the causal pathway to OCD, while strictly controlling for genetic and early shared environmental influences. To date (May 2023), 43 pairs of twins (21 discordant for OCD) have been recruited. Discussion: OCDTWIN hopes to generate unique insights into environmental risk factors that are in the causal pathway to OCD, some of which have the potential of being actionable targets

Operational Definitions of Treatment Response and Remission in Obsessive-Compulsive Disorder Capture Meaningful Improvements in Everyday Life

Introduction: The operational definitions of treatment response, partial response, and remission in obsessive-compulsive disorder (OCD) are widely used in clinical trials and regular practice. However, the clinimetric sensitivity of these definitions, that is, whether they identify patients that experience meaningful changes in their everyday life, remains unexplored.Objective: The objective was to examine the clinimetric sensitivity of the operational definitions of treatment response, partial response, and remission in children and adults with OCD.Methods: Pre- and post-treatment data from five clinical trials and three cohort studies of children and adults with OCD (n = 1,528; 55.3% children, 61.1% female) were pooled. We compared (1) responders, partial responders, and non-responders and (2) remitters and non-remitters on self-reported OCD symptoms, clinician-rated general functioning, and self-reported quality of life. Remission was also evaluated against post-treatment diagnostic interviews.Results: Responders and remitters experienced large improvements across validators. Responders had greater improvements than partial responders and non-responders on self-reported OCD symptoms (Cohen’s d 0.65–1.13), clinician-rated functioning (Cohen’s d 0.53–1.03), and self-reported quality of life (Cohen’s d 0.63–0.73). Few meaningful differences emerged between partial responders and non-responders. Remitters had better outcomes across most validators than non-remitters. Remission criteria corresponded well with absence of post-treatment diagnosis (sensitivity/specificity: 93%/83%). Using both the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS) and the Clinical Global Impression Scale yielded more conservative results and more robust changes across validators, compared to only using the Y-BOCS.Conclusions: The current definitions of treatment response and remission capture meaningful improvements in the everyday life of individuals with OCD, whereas the concept of partial response has dubious clinimetric sensitivity