Reliability, Validity and Acceptability of the PEDI-CAT with ASD Scales for Australian Children and Youth on the Autism Spectrum.

PURPOSE: The PEDI-CAT (ASD) is used to assess functioning of children and youth on the autism spectrum; however, current psychometric evidence is limited. This study aimed to explore the reliability, validity and acceptability of the PEDI-CAT (ASD) using a large Australian sample. METHODS: Caregivers of 134 children and youth on the spectrum participated in clinical assessments involving the administration of the PEDI-CAT (ASD), Vineland-3, PEDI-CAT (Original) and a feedback instrument. The PEDI-CAT (ASD) content was compared to the ICF Core Sets for ASD to summarize areas of functioning assessed and relevance to autism. RESULTS: The PEDI-CAT (ASD) demonstrated good to excellent internal consistency and test-re-test reliability. Parallel forms reliability with the PEDI-CAT (Original) included significant correlations (good to excellent), however, t-tests showed significantly higher Social/Cognitive scores for the ASD version. Convergent validity results demonstrated that most PEDI-CAT (ASD) and Vineland-3 core domains were significantly correlated (poor to good). Content analysis revealed that the PEDI-CAT (ASD) covered less than half of the ICF Core Sets for ASD (mostly Activities and Participation codes). Just over half the codes assigned to the PEDI-CAT (ASD) were represented in the ICF Core Sets for ASD. Feedback on the acceptability of the measure was mixed, but overall was it was considered user-friendly and efficient. CONCLUSION: The PEDI-CAT (ASD) had adequate psychometric properties and acceptability as a measure of Activities and Participation codes. However, it lacks comprehensiveness and relevance when compared to the ICF Core Sets for ASD and has the potential to overestimate functioning.

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.

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.

Validating the International Classification of Functioning, Disability and Health Core Sets for Autism in a Sample of Australian School-Aged Children on the Spectrum.

Assessing functioning of children on the autism spectrum is necessary to determine the level of support they require to participate in everyday activities across contexts. The International Classification of Functioning, Disability and Health (ICF) is a comprehensive biopsychosocial framework recommended for classifying health-related functioning in a holistic manner, across the components of body functions, activities and participation, and environmental factors. The ICF Core Sets (ICF-CSs) are sub-sets of relevant codes from the broader framework that provide a basis for developing condition-specific measures. This study combined the ICF-CSs for autism, attention deficit hyperactivity disorder (ADHD) and cerebral palsy (CP) to validate the ICF-CSs for autism in an Australian sample of school-aged children. This cross-sectional study involved caregivers of school-aged children on the spectrum (n = 70) completing an online survey and being visited in their homes by an occupational therapist to complete the proxy-report measure based on the ICF-CSs for autism, ADHD and CP. Absolute and relative frequencies of ratings for each of the codes included in the measure were calculated and reported, along with the number of participants who required clarification to understand the terminology used. Findings indicate that the body functions and activities and participation represented in the ICF-CSs for autism were the most applicable for the sample. However, findings relating to environmental factors were less conclusive. Some codes not currently included in the ICF-CSs for autism may warrant further investigation, and the language used in measures based on the ICF-CSs should be revised to ensure clarity.

"He Sees his Autism as a Strength, Not a Deficit Now": A Repeated Cross-Sectional Study Investigating the Impact of Strengths-Based Programs on Autistic Adolescents.

Recent studies have reported that strengths-based programs, leveraging autistic adolescents' abilities and interests, could improve their skills and facilitate social engagement. However, little is known about the long-term impact of strengths-based approaches. This study aimed to explore the long-term outcomes of community strengths-based programs designed to support autistic adolescents in developing interests and skills in Science, Technology, Engineering, Arts, and Mathematics (STEAM) and the factors influencing their participation in these programs. A repeated cross-sectional survey study over three years recruited 52 parents in 2018, 52 parents in 2019, and 38 parents in 2020. Results highlighted the positive impact of these programs on autistic adolescents' health and well-being, social relationships and interactions, self-confidence and self-esteem, sense of belonging, and activities and participation. Five key elements influencing participation included the enthusiasm of the participants, their self-perception, the approach of the programs, the learning environment, and the attitudes of the mentors. This study implies that strengths-based approaches to intervention and support for autistic adolescents in a supported environment are a social model solution that could potentially have positive participant outcomes. Findings from this study could provide a framework underpinning future strengths-based interventions.

The Well-being and Support Needs of Australian Caregivers of Neurodiverse Children.

Caregivers of children with neurodiverse needs are known to experience challenges and hardship due to the increased needs of the child and the lack of support available. This study aimed to explore the support needs and well-being of caregivers of children with neurodiverse needs in Australia. Sixty-six caregivers participated in an online survey asking questions about support needs. The results highlighted five main themes that caregivers commonly experienced including: barriers to community engagement, impact on close relationships, negative impact on mental health and identity, financial hardship, and identified support needs. Findings identified multiple unmet needs existing amongst caregivers and further emphasises the importance of addressing these needs to improve the quality of life of caregivers of children with neurodiverse needs.

Assessing functioning for individuals with neurodevelopmental conditions: Current clinical practice in Australia.

BACKGROUND: In the disability sector globally, and specifically in Australia, assessments of functioning have become key to diagnostic processes, and accessing therapy and funding. Over half of all individuals accessing support through Australia's National Disability Insurance Scheme have a neurodevelopmental condition diagnosis. Little is known about assessments of functioning for this population. METHODS: A mixed methods online survey was designed to understand the current assessment of functioning practices (including clinical contexts, concepts being assessed, and assessment methods) and barriers and facilitators to clinicians using best practice. Results were analysed descriptively, and differences between professions calculated where possible. Content analysis was used to explore qualitative comments. RESULTS: Clinicians from various medical and allied health backgrounds completed the survey (n = 93), with varying ranges of age, experience, and education. Clinicians reported that they assessed functioning across age, setting, sector, funding body, and individuals with a wide variety of diagnoses. Missing from current practice is a clear transdisciplinary conceptualisation of functioning. The largest barriers to best practice were limited time, large caseloads, availability of appropriate tools, and lack of clarity from funding bodies. CONCLUSIONS: Missing from current practice is a clear transdisciplinary conceptualisation of functioning.These results will help inform steps forward to improve assessment of functioning practices to ensure that all individuals receive appropriate and sufficient support.

Perceived Support Needs of School-Aged Young People on the Autism Spectrum and Their Caregivers.

With increasing demands for health, disability and education services, innovative approaches can help distribute limited resources according to need. Despite an increased focus on support needs within the clinical pathway and policy landscape, the body of research knowledge on this topic is at a relatively early stage. However, there appears to be a sense of unmet support needs and dissatisfaction with the provision of required support following an autism diagnosis amongst caregivers of young people on the spectrum. The primary aim of this study was to explore the perceived support needs of Australian school-aged young people on the spectrum and their caregiver(s). This was achieved using a phenomenographic Support Needs Interview conducted by occupational therapists during home-visits with caregivers of 68 young people on the spectrum (5-17 years). Qualitative data analysis resulted in two hierarchical outcome spaces, one each for young people and their caregivers, indicating interacting levels of support need areas that could be addressed through a combination of suggested supports. These support needs and suggested supports align with almost all chapters within the Body Functions, Activities and Participation and Environmental Factors domains of the International Classification of Functioning, Disability and Health. The overall goals of meeting these complex and interacting support needs were for the young people to optimize their functioning to reach their potential and for caregivers to ensure the sustainability of their caregiving capacity. A series of recommendations for support services, researchers and policy makers have been made to position support needs as central during the assessment, support and evaluation phases.

An Evaluation of the Overall Utility of Measures of Functioning Suitable for School-Aged Children on the Autism Spectrum: A Scoping Review.

A diagnosis of an autism spectrum condition (autism) provides limited information regarding an individual's level of functioning, information key in determining support and funding needs. Using the framework introduced by Arksey and O'Malley, this scoping review aimed to identify measures of functioning suitable for school-aged children on the autism spectrum and evaluate their overall utility, including content validity against the International Classification of Functioning, Disability and Health (ICF) and the ICF Core Sets for Autism. The overall utility of the 13 included tools was determined using the Outcome Measures Rating Form (OMRF), with the Adaptive Behavior Assessment System (ABAS-3) receiving the highest overall utility rating. Content validity of the tools in relation to the ICF and ICF Core Sets for Autism varied, with few assessment tools including any items linking to Environmental Factors of the ICF. The ABAS-3 had the greatest total number of codes linking to the Comprehensive ICF Core Set for Autism while the Vineland Adaptive Behavior Scales (Vineland-3) had the greatest number of unique codes linking to both the Comprehensive ICF Core Set for Autism and the Brief ICF Core Set for Autism (6-16 years). Measuring functioning of school-aged children on the spectrum can be challenging, however, it is important to accurately capture their abilities to ensure equitable and individualised access to funding and supports.

Considerations of the built environment for autistic individuals: A review of the literature.

LAY ABSTRACT: Factors related to the interiors of buildings, including the layout of rooms, colours, smells, noises, temperature, ventilation, colour and clutter, among other things, can change the way we interact with our environment and the people around us. Autistic individuals can have differences in processing sensory information and may find aspects of the built environment (BE) over-whelming and difficult to navigate. We reviewed the existing literature exploring the BE and autism. This study found that it is possible to make changes to the BE to create more inclusive and friendly environments for everyone, including autistic individuals. Findings from this study provide clear recommendations that can be used by interior designers, architects, builders, and clinical practitioners to make a positive difference. Key recommendations include using simple spatial layouts, compartmentalising and zoning spaces into specific activity sections and providing retreat spaces. The thoughtful placement of windows and blinds and the installation of dimmable lights, for example, will allow users to manage or reduce sensory over-stimulation caused by lights. Similarly, we recommend creating soundproofing and sound absorbent materials to reduce background noise and sound levels. We also recommend using neutral or simple colour palettes and restrained use of patterns. Finally, and most importantly, the BE needs to be flexible and adaptable to meet the unique needs of each person. This study provides a starting point for design guidelines and recommendations towards making a difference to the everyday experiences of the interiors of buildings.

Content validation of common measures of functioning for young children against the International Classification of Functioning, Disability and Health and Code and Core Sets relevant to neurodevelopmental conditions.

LAY ABSTRACT: Young children who have developmental delay, autism, or other neurodevelopmental conditions can have difficulties doing things in different areas of their life. What they can and cannot do is called their level of functioning. There are lots of assessment measures that aim to assess functioning. But, we are not sure if these measures assess all the things we need to know about these children's functioning. Other research has identified lists of items (codes) that need to be assessed to understand functioning for young children with different neurodevelopmental conditions fully. These lists include body functions (the things a child's body or brain can do), activities and participation (the activities and tasks a child does) and environmental factors (parts of the environment that can influence functioning). In this study, we looked at the items from these lists assessed by different functioning measures to see how they compared to what should be assessed. The measures that we looked at covered 21%-57% of all the codes and 19%-63% of the codes for lists specific to different conditions. Most of the measures focused on activity and participation codes, and they rarely assessed environmental factors. Knowing which codes and how much of the lists the measures assess can help researchers, clinicians and policymakers to choose measures that are more appropriate for young children with neurodevelopmental conditions.

A randomised trial of pharmacist-led discharge prescribing in an Australian geriatric evaluation and management service.

Background Prescribing discharge medications is a potential "next step" for pharmacists in Australian hospitals, however, safety must be demonstrated via a randomised controlled study. Objective To determine if a collaborative, pharmacist led discharge prescribing model results in less patients with medication errors than conventional prescribing for both handwritten and digital prescriptions. Setting Geriatric Medical ward in a quaternary hospital, Australia Methods A prospective, single-blinded randomised controlled study of patients randomised to conventional (control) or a pharmacist-led prescribing (intervention) arms at discharge from hospital. This study had 2 phases; (1) handwritten prescribing and (2) digital prescribing. In addition, the two prescribing methods were compared. Main outcome measures The primary outcome was the percentage of patients with a medication error on their discharge prescription. Results In phase 1, 45 patients were recruited; 21 (control) and 24 (intervention). 95% of control patients and 29% in the intervention arm had at least one medication error, p < 0.0002, relative risk (RR) 0.31, confidence interval (CI) 0.16-0.58. The number of items with at least 1 error reduced from 69 to 4%; p < 0.0001, RR 0.06, CI 0.03-0.11 and fewer items had at least 1 clinically significant error (11% vs 2%, p = 0.0004, RR 0.15, CI 0.04-0.30). In phase 2, 39 patients were recruited; 18 (control) and 21 (intervention). 100% of control patients and 62% in the intervention arm had at least one medication error (p = 0.005, RR 0.62, CI 0.44-0.87). Items with at least 1 error decreased from 21 to 7% (p < 0.0001, RR 0.34, CI 0.44-0.56), there were fewer items with at least 1 clinically significant error (13% vs 5%, p < 0.003, RR 0.4, CI 0.22-0.72). There was no significant change in the primary outcome between handwritten and digital (60% vs 79%, p < 0.055). Conclusion In a geriatric setting, pharmacist-led partnered discharge prescribing results in significantly less patients with medication errors than the conventional method for both handwritten and digital methods.