Assessment of functioning in ADHD according to World Health Organization standards: First revision of the International Classification of Functioning, Disability and Health Core Sets.

AIM: To conduct the first revision of the World Health Organization International Classification of Functioning, Disability and Health (ICF) Core Sets for attention-deficit/hyperactivity disorder (ADHD). METHOD: A Delphi-like method was used, integrating evidence from stakeholder feedback and developing and piloting the ADHD ICF Core Set platform to inform revisions to the ADHD Core Sets. RESULTS: A total of 27 second-level ICF codes were added to the comprehensive ADHD Core Set: body functions of temperament and personality, and basic sensory functions; activities and participation in terms of learning to read and write, spoken communication, community life, religion and spirituality, education, economy, and human rights; environmental factors for domestic animals; and several societal services. The revised comprehensive Core Set contains 98 ICF codes: 18 body function codes; 47 activities and participation codes; and 33 environmental factor codes. Extensive changes were also made to the age-appropriate brief Core Sets to allow their independent use in research and clinical practice. INTERPRETATION: Although substantially expanded, the revised ICF Core Sets better reflect the lived experience of individuals with ADHD and clinical implementation preferences than the initial sets. We recommend further feasibility and validation studies of these Core Sets with the goal of optimizing their acceptance and practicability, and strengthening their evidence base.

Standardization and cross-cultural comparisons of the Swedish Conners 3® rating scales.

PURPOSE: The Conners Rating Scales are widely used in research and clinical practice for measuring attention deficit/hyperactivity disorder (ADHD) and associated problem behaviors, but country-specific norms are seldom collected. The current study presents the standardization of the Swedish Conners 3® Rating Scales. In addition, we compared the Swedish norms to those collected in the U.S. and Germany. MATERIAL AND METHODS: The study included altogether 3496 ratings of children and adolescents aged 6-18 years from population-based samples. RESULTS: The scores obtained for the Swedish Conners 3® showed satisfactory to excellent internal consistency for most subscales and excellent test-retest reliability. Across-informant correlations were modest. Cross-country comparisons revealed that aggression symptoms rated by teachers and ADHD symptoms rated by parents differed between Sweden, Germany and the U.S. Executive functioning deficits also varied as a function of rater and country, with German and Swedish teachers reporting increasing behavior problems with age, whereas a decrease was observed in the U.S. For some subscales, the observed cross-cultural differences were large enough for a child to be classified as being within the normal range (t-score <60) in one country and within the clinical range (t-score > 70) in another country. CONCLUSION: The present study shows that the Swedish adaptation of the Conners 3® provides consistent and reproducible scores. However, across-informant ratings were only modest and significant cross-cultural differences in scoring were observed. This emphasizes the need for multi-informant assessment as well as for national norms for rating instruments commonly used within child and adolescent psychiatry research and clinical settings.

Annual Research Review: Quality of life and childhood mental and behavioural disorders - a critical review of the research.

BACKGROUND: An individual's subjective perception of well-being is increasingly recognized as an essential complement to clinical symptomatology and functional impairment in children's mental health. Measurement of quality of life (QoL) has the potential to give due weight to the child's perspective. SCOPE AND METHODOLOGY: Our aim was to critically review the current evidence on how childhood mental disorders affect QoL. First, the major challenges in this research field are outlined. Then we present a systematic review of QoL in children and adolescents aged 0-18 years formally diagnosed with a mental and behavioural disorder, as compared to healthy or typically developing children or children with other health conditions. Finally, we discuss limitations of the current evidence base and future directions based on the results of the systematic review and other relevant literature. FINDINGS AND CONCLUSIONS: The systematic review identified 41 eligible studies. All were published after the year 2000 and 21 originated in Europe. The majority examined QoL in neurodevelopmental disorders, including attention-deficit hyperactivity disorder (k = 17), autism spectrum disorder (k = 6), motor disorders (k = 5) and intellectual disability (k = 4). Despite substantial heterogeneity, studies demonstrate that self-reported global QoL is significantly reduced compared to typical/healthy controls across several disorders and QoL dimensions. Parents' ratings were on average substantially lower, casting doubt on the validity of proxy-report. Studies for large diagnostic groups such as depressive disorders, anxiety disorders, (early onset) schizophrenia and eating disorders are largely lacking. We conclude that representative, well-characterized normative and clinical samples as well as longitudinal and qualitative designs are needed to further clarify the construct of QoL, to derive measures of high ecological validity, and to examine how QoL fluctuates over time and is attributable to specific conditions or contextual factors.

The Interrater Reliability of the Autism Diagnostic Interview-Revised (ADI-R) in Clinical Settings.

BACKGROUND: The Autism Diagnostic Interview-Revised (ADI-R) is considered a first choice assessment tool in autism spectrum disorder. Nevertheless, despite its wide use in psychiatric practice and recommendations by various clinical guidelines, its interrater reliability has predominantly been confirmed in research settings by specially trained, research reliability interviewers. The reliability of ADI-R assessments among clinicians has not yet been established. Therefore, this study examined the spontaneous interrater reliability of the ADI-R in a naturalistic clinical multicenter setting. SAMPLING AND METHODS: Ten video-recorded ADI-R administrations were rated by 5 different raters each from a pool of 11 raters affiliated to 8 different clinical sites. RESULTS: The interrater reliability for the 12 diagnostic criteria operationalizing autism spectrum disorders according to DSM-IV/ICD-10 in the ADI-R algorithms ranged between G(q,k) (analogous to intraclass correlations) = 0.96 and 0.99 for reciprocal social interaction, 0.96 and 1.00 for communication, and 0.91 and 0.97 for repetitive and restricted behavior. Reliability of diagnostic classification was ĸCohen 0.83. CONCLUSIONS: The findings endorse the psychometric properties of ADI-R in terms of interrater reliability previously reported from research settings and support their generalization to common clinical settings. Limitations of this study include an unbalanced sample composition.

The objectivity of the Autism Diagnostic Observation Schedule (ADOS) in naturalistic clinical settings.

The Autism Diagnostic Observation Schedule (ADOS) is a first-choice diagnostic tool in autism spectrum disorder (ASD). Excellent interpersonal objectivity (interrater reliability) has been demonstrated for the ADOS under optimal conditions, i.e., within groups of highly trained "research reliable" examiners in research setting. We investigated the spontaneous interrater reliability among clinically trained ADOS users across multiple sites in clinical routine. Forty videotaped administrations of the ADOS modules 1-4 were rated by five different raters each from a pool of in total 15 raters affiliated to 13 different clinical sites. G(q,k) coefficients (analogous to intraclass correlations), kappas (ĸ) and percent agreement (PA) were calculated. The median interrater reliability for items across the four modules was G(q,k) = .74-.83, with the single ADOS items ranging from .23 to .94. G(q,k) for total scores was .85-.92. For diagnostic classification (ASD/non-spectrum), PA was 64-82 % and Fleiss' ĸ .19-.55. Objectivity was lower for pervasive developmental disorder not otherwise specified and non-spectrum diagnoses as compared to autism. Interrater reliabilities of the ADOS items and domain totals among clinical users across multiple sites were in the same range as previously reported for research reliable users, while the one for diagnostic classification was lower. Differences in sample characteristics, rater skills and statistics compared with previous studies are discussed. Findings endorse the objectivity of the ADOS in naturalistic clinical settings, but also pinpoint its limitations and the need and value of adequate and continuous rater training.

The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets.

LAY ABSTRACT: Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people's situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders.

A functional artificial neural network for noninvasive pretreatment evaluation of glioblastoma patients.

BACKGROUND: Pretreatment assessments for glioblastoma (GBM) patients, especially elderly or frail patients, are critical for treatment planning. However, genetic profiling with intracranial biopsy carries a significant risk of permanent morbidity. We previously demonstrated that the CUL2 gene, encoding the scaffold cullin2 protein in the cullin2-RING E3 ligase (CRL2), can predict GBM radiosensitivity and prognosis. CUL2 expression levels are closely regulated with its copy number variations (CNVs). This study aims to develop artificial neural networks (ANNs) for pretreatment evaluation of GBM patients with inputs obtainable without intracranial surgical biopsies. METHODS: Public datasets including Ivy-GAP, The Cancer Genome Atlas Glioblastoma (TCGA-GBM), and the Chinese Glioma Genome Atlas (CGGA) were used for training and testing of the ANNs. T1 images from corresponding cases were studied using automated segmentation for features of heterogeneity and tumor edge contouring. A ratio comparing the surface area of tumor borders versus the total volume (SvV) was derived from the DICOM-SEG conversions of segmented tumors. The edges of these borders were detected using the canny edge detector. Packages including Keras, Pytorch, and TensorFlow were tested to build the ANNs. A 4-layered ANN (8-8-8-2) with a binary output was built with optimal performance after extensive testing. RESULTS: The 4-layered deep learning ANN can identify a GBM patient's overall survival (OS) cohort with 80%-85% accuracy. The ANN requires 4 inputs, including CUL2 copy number, patients' age at GBM diagnosis, Karnofsky Performance Scale (KPS), and SvV ratio. CONCLUSION: Quantifiable image features can significantly improve the ability of ANNs to identify a GBM patients' survival cohort. Features such as clinical measures, genetic data, and image data, can be integrated into a single ANN for GBM pretreatment evaluation.

The New DSM-5 Impairment Criterion: A Challenge to Early Autism Spectrum Disorder Diagnosis?

The possible effect of the DSM-5 impairment criterion on diagnosing autism spectrum disorder (ASD) in young children was examined in 127 children aged 20-47 months with a DSM-IV-TR clinical consensus diagnosis of ASD. The composite score of the Vineland Adaptive Behavior Scales (VABS) served as a proxy for the DSM-5 impairment criterion. When applying a mild level of impairment (cutoff: 1 SD below the mean on the VABS), 88 % of the cases fulfilled the impairment criterion. Sixty-nine percent fulfilled the impairment criterion at a moderate level (1.5 SDs) and 33 % at a severe level (2 SDs). Findings indicate that a strict application of the new DSM-5 impairment criterion might compromise early diagnosis of ASD.

The added value of the combined use of the Autism Diagnostic Interview-Revised and the Autism Diagnostic Observation Schedule: diagnostic validity in a clinical Swedish sample of toddlers and young preschoolers.

The diagnostic validity of the new research algorithms of the Autism Diagnostic Interview-Revised and the revised algorithms of the Autism Diagnostic Observation Schedule was examined in a clinical sample of children aged 18-47 months. Validity was determined for each instrument separately and their combination against a clinical consensus diagnosis. A total of N = 268 children (n = 171 with autism spectrum disorder) were assessed. The new Autism Diagnostic Interview-Revised algorithms (research cutoff) gave excellent specificities (91%-96%) but low sensitivities (44%-52%). Applying adjusted cutoffs (lower than recommended based on receiver operating characteristics) yielded a better balance between sensitivity (77%-82%) and specificity (60%-62%). Findings for the Autism Diagnostic Observation Schedule were consistent with previous studies showing high sensitivity (94%-100%) and alongside lower specificity (52%-76%) when using the autism spectrum cutoff, but better balanced sensitivity (81%-94%) and specificity (81%-83%) when using the autism cutoff. A combination of both the Autism Diagnostic Interview-Revised (with adjusted cutoff) and the Autism Diagnostic Observation Schedule (autism spectrum cutoff) yielded balanced sensitivity (77%-80%) and specificity (87%-90%). Results favor a combined usage of the Autism Diagnostic Interview-Revised and Autism Diagnostic Observation Schedule in young children with unclear developmental problems, including suspicion of autism spectrum disorder. Evaluated separately, the Autism Diagnostic Observation Schedule (cutoff for autism) provides a better diagnostic accuracy than the Autism Diagnostic Interview-Revised.

Autism Diagnostic Interview-Revised (ADI-R) Algorithms for Toddlers and Young Preschoolers: Application in a Non-US Sample of 1,104 Children.

The current study aimed to investigate the Autism Diagnostic Interview-Revised (ADI-R) algorithms for toddlers and young preschoolers (Kim and Lord, J Autism Dev Disord 42(1):82-93, 2012) in a non-US sample from ten sites in nine countries (n = 1,104). The construct validity indicated a good fit of the algorithms. The diagnostic validity was lower, with satisfactorily high specificities but moderate sensitivities. Young children with clinical ASD and lower language ability were largely in the mild-to-moderate or moderate-to-severe concern ranges of the ADI-R, nearly half of the older and phrase speech ASD-group fell into the little-to-no concern range. Although broadly the findings support the toddler algorithms, further work is required to understand why they might have different properties in different samples to further inform research and clinical use.

Autism spectrum disorders in the Stockholm Youth Cohort: design, prevalence and validity.

OBJECTIVE: Reports of rising prevalence of autism spectrum disorders (ASD), along with their profound personal and societal burden, emphasize the need of methodologically sound studies to explore their causes and consequences. We here present the design of a large intergenerational resource for ASD research, along with population-based prevalence estimates of ASD and their diagnostic validity. METHOD: The Stockholm Youth Cohort is a record-linkage study comprising all individuals aged 0-17 years, ever resident in Stockholm County in 2001-2007 (N = 589,114). ASD cases (N = 5,100) were identified using a multisource approach, involving registers covering all pathways to ASD diagnosis and care, and categorized according to co-morbid intellectual disability. Prospectively recorded information on potential determinants and consequences of ASD were retrieved from national and regional health and administrative registers. Case ascertainment was validated through case-note review, and cross validation with co-existing cases in a national twin study. RESULTS: The 2007 year prevalence of ASD in all children and young people was 11.5 per 1,000 (95% confidence interval 11.2-11.8), with a co-morbid intellectual disability recorded in 42.6% (41.0-44.2) of cases. We found 96.0% (92.0-98.4) of reviewed case-notes being consistent with a diagnosis of ASD, and confirmed ASD in 85.2% (66.2-95.8) of affected twins. CONCLUSIONS: Findings from this contemporary study accords with recently reported prevalence estimates from Western countries at around 1%, based on valid case ascertainment. The Stockholm Youth Cohort, in light of the availability of extensive information from Sweden's registers, constitutes an important resource for ASD research. On-going work, including collection of biological samples, will enrich the study further.

WISC-III index score profiles of 520 Swedish children with pervasive developmental disorders.

WISC-III (Wechsler, 1991) index score profiles and their characteristics were examined with traditional statistics in a large Swedish sample consisting of children with autistic disorder (n = 85), Asperger's disorder (n = 341), or pervasive developmental disorders not otherwise specified (PDD-NOS; n = 94). There was a clear and significant difference in level between children with Asperger's disorder, who performed in the average range according to the Swedish standardization, and children with either autistic disorder or PDD-NOS, who performed below the average range (almost 2 standard deviations below the mean), but few other differences between the diagnostic groups were found. The variation in this sample, compared with the Swedish standardization, was generally larger in regard to the size of standard deviations and to the proportion of individuals who exhibited significant differences between indices. The result implied that a WISC-III profile could not be used to discriminate between the different PDDs.