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.

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.

How standardized are "standard protocols"? Variations in protocol and performance evaluation for slow cortical potential neurofeedback: A systematic review.

Neurofeedback (NF) aims to alter neural activity by enhancing self-regulation skills. Over the past decade NF has received considerable attention as a potential intervention option for many somatic and mental conditions and ADHD in particular. However, placebo-controlled trials have demonstrated insufficient superiority of NF compared to treatment as usual and sham conditions. It has been argued that the reason for limited NF effects may be attributable to participants' challenges to self-regulate the targeted neural activity. Still, there is support of NF efficacy when only considering so-called "standard protocols," such as Slow Cortical Potential NF training (SCP-NF). This PROSPERO registered systematic review following PRISMA criteria searched literature databases for studies applying SCP-NF protocols. Our review focus concerned the operationalization of self-regulatory success, and protocol-details that could influence the evaluation of self-regulation. Such details included; electrode placement, number of trials, length per trial, proportions of training modalities, handling of artifacts and skill-transfer into daily-life. We identified a total of 63 eligible reports published in the year 2000 or later. SCP-NF protocol-details varied considerably on most variables, except for electrode placement. However, due to the increased availability of commercial systems, there was a trend to more uniform protocol-details. Although, token-systems are popular in SCP-NF for ADHD, only half reported a performance-based component. Also, transfer exercises have become a staple part of SCP-NF. Furthermore, multiple operationalizations of regulatory success were identified, limiting comparability between studies, and perhaps usefulness of so-called transfer-exercises, which purpose is to facilitate the transfer of the self-regulatory skills into every-day life. While studies utilizing SCP as Brain-Computer-Interface mainly focused on the acquisition of successful self-regulation, clinically oriented studies often neglected this. Congruently, rates of successful regulators in clinical studies were mostly low (<50%). The relation between SCP self-regulation and behavior, and how symptoms in different disorders are affected, is complex and not fully understood. Future studies need to report self-regulation based on standardized measures, in order to facilitate both comparability and understanding of the effects on symptoms. When applied as treatment, future SCP-NF studies also need to put greater emphasis on the acquisition of self-regulation (before evaluating symptom outcomes). Systematic review registration: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021260087, Identifier: CRD42021260087.

Immediate and Sustained Effects of Neurofeedback and Working Memory Training on Cognitive Functions in Children and Adolescents with ADHD: A Multi-Arm Pragmatic Randomized Controlled Trial.

OBJECTIVE: To evaluate the effects of neurocognitive training methods on targeted cognitive functions in children and adolescent with ADHD. METHOD: A pragmatic four-arm randomized controlled trial compared two types of neurofeedback (Slow Cortical Potential and Live Z-score) and Working-memory training (WMT) with treatment as usual. N = 202 participants with ADHD aged 9 to 17 years were included. A battery of cognitive function tests was completed pretreatment, posttreatment, and after 6-months. RESULTS: The effects of WMT on spatial and verbal working-memory were superior to neurofeedback and treatment as usual at posttreatment, but only partially sustained at follow-up. No other consistent effects were observed. We found no clear indications that effects were moderated by ADHD presentation, ongoing medication, age, or sex. CONCLUSION: The sustained effects of neurocognitive training on cognitive functioning in children and adolescents with ADHD may be limited. Future research should focus on more personalized forms of neurocognitive training.

Slow Cortical Potential Versus Live Z-score Neurofeedback in Children and Adolescents with ADHD: A Multi-arm Pragmatic Randomized Controlled Trial with Active and Passive Comparators.

Neurofeedback (NF) as a treatment for Attention Deficit Hyperactivity Disorder (ADHD) has been evaluated in several trials, but the specificity and generalizability of effects remain unclear. This four-arm randomized controlled trial evaluated the efficacy of Slow Cortical Potential (SCP; standard NF protocol) and Live Z-score (LZS; non-standard NF protocol) delivered in high-frequency format (five sessions per week during five weeks), compared to Working-memory training (WMT; active comparator) and Treatment-as-usual (TAU; passive comparator). N = 202 children/adolescents aged 9 to 17 years with ADHD participated. The primary outcome measure was multi-report (self-, teacher-, and parent-report) ADHD core symptoms on the Conners-3, assessed at baseline, posttreatment, and 6-months follow-up. Data were analyzed using a linear mixed model. Between-group differences were scarce and did not show a distinct pattern. Superiority of LZS over TAU at endpoint were observed for teacher-rated measures only, while significant differences between SCP and TAU were restricted to posttreatment measurements. Contrary to our expectations, LZS outperformed SCP at endpoint for teacher-rated hyperactivity (-5.37; 95% CI: -10.14 to -0.60; p = .028; d = -.36) and overall ADHD symptoms (-2.20; -4.18 to -0.22; p = .030; d = -.41). There was no indication that either form of NF was superior to WMT. No severe adverse events were reported during the trial, whereas transient stress-related problems were quite frequent. Overall, the results from this pragmatic trial do not provide convincing support for broad implementation of NF in child and adolescent psychiatric services. Future research should try to clarify for whom and under what circumstances NF might be a viable treatment option.

Neurofeedback in ADHD: A qualitative study of strategy use in slow cortical potential training.

METHOD: We collected 130 short semi-structured interviews following treatment sessions from 30 participants with ADHD receiving NF using slow cortical potential training (SCP). The interviews were transcribed verbatim and analyzed using thematic analysis. Themes where evaluated for changes over-time and between participants with high/low treatment compliance. Interviews from 14 participants who had undergone at least five completed interviews were examined in more depths, aiming to establish typical strategy/training profiles. RESULTS: We identified 16 strategies covering four domains: cognitive, physiological, emotional and unspecified. Typical of most strategies were that they served as a vehicle to regulate mental arousal. Overall, no clear patterns of changes over time were found. Highly compliant participants reported to use the strategies from the emotional domain and the strategy focus more frequently than neutral compliant participants did, while neutral compliant participants reported the use of the strategies muscular activity and passivity more often than participants did with high compliance. Across participants, three strategy profiles were derived, those who handled the task by manipulating their state of mind in relation to the NF task, those who were mainly manifest and concrete towards the task, and those who were mostly unaware of what they were doing. These profiles differed in self-regulatory performance, and only participants showing the state of mind profile experienced a decrease of ADHD symptoms accompanied by objectively measured improvements in self-regulation. In addition, compliance affected both how and what strategies were used. CONCLUSION/DISCUSSION: A heterogeneous array of cognitive and other strategies is used at varying levels of training compliance by participants with ADHD during SCP that could be condensed to three prototypical profiles. Future research should take compliance and strategy/training profiles into account when evaluating NF. The latter may help to clarify which and how brain activity regulating mechanisms drive training, individual response to NF, and how they are influenced by motivational factors. Our findings might also help to facilitate more effective instructions in how to approach SCP in clinical practice.