Search

This study describes social, mental health, and quality of life outcomes in early adulthood, and examines childhood predictors in the Special Needs and Autism Project (SNAP), a longitudinal population-based cohort. Young autistic adults face variable but often substantial challenges across many areas of life. Prediction of outcomes is important to set expectations and could lead to the development of targeted early intervention. Autistic children were enrolled at age 12 and parents reported outcomes 11 years later when their children were age 23 (n = 121). Thirty six percent of autistic adults were in competitive employment or education and 54% had frequent contact with friends. Only 5% of autistic adults were living independently, and 37% required overnight care. Moderate or severe anxiety and depression symptoms were found for 11% and 12% of young adults, respectively. Subjective quality of life was similar to UK averages except for social relationships. Using childhood IQ, autism traits and adaptive functioning meaningful predictions can be made of living situation, employment and education and physical health. Prediction was poor for friendships, mental health outcomes and other aspects of quality of life. Our results suggest that although young autistic adults face challenges across normative, social outcomes, they may be faring better in regard to mental health or quality of life. Childhood IQ, autism traits and adaptive functioning are most useful for predicting outcomes. After accounting for these factors, childhood measurements of behavioral and emotional problems and language offered little improvement in prediction of adult outcomes.

Up to 50% of autistic people experience co-occurring anxiety, which significantly impacts their quality of life. Consequently, developing new interventions (and/ or adapting existing ones) that improve anxiety has been indicated as a priority for clinical research and practice by the autistic community. Despite this, there are very few effective, evidence-based therapies available to autistic people that target anxiety; and those that are available (e.g., autism adapted Cognitive Behavioural Therapy; CBT) can be challenging to access. Thus, the current study will provide an early-stage proof of concept for the feasibility and acceptability of a novel app-based therapeutic approach that has been developed with, and adapted for, autistic people to support them in managing anxiety using UK National Institute for Health and Care Excellence (NICE) recommended adapted CBT approaches. This paper describes the design and methodology of an ethically approved (22/LO/0291) ongoing non-randomised pilot trial that aims to enrol approximately 100 participants aged >=16-years with an existing autism diagnosis and mild-to-severe self-reported anxiety symptoms (trial registration NCT05302167). Participants will be invited to engage with a self-guided app-based intervention—‘Molehill Mountain’. Primary (Generalised Anxiety Disorder Assessment, Hospital Anxiety and Depression Scale) and secondary outcomes (medication/ service use and Goal Attainment Scaling) will be assessed at baseline (Week 2 +/- 2), endpoint (Week 15 +/- 2) and three follow-ups (Weeks 24, 32 and 41 +/- 4). Participants will also be invited to complete an app acceptability survey/ interview at the study endpoint. Analyses will address: 1) app acceptability/ useability and feasibility (via survey/ interview and app usage data); and 2) target population, performance of outcome measures and ideal timing/ duration of intervention (via primary/ secondary outcome measures and survey/ interview)–with both objectives further informed by a dedicated stakeholder advisory group. The evidence from this study will inform the future optimisation and implementation of Molehill Mountain in a randomised-controlled trial, to provide a novel tool that can be accessed easily by autistic adults and may improve mental health outcomes., This study received funding from the MRC Confidence in Concept award 2019 (1118148) - awarded to BO, ES. DM, ES, BO report grants during the conduct of (but unrelated to) this study from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 777394 for the project AIMS-2-TRIALS. This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation programme and EFPIA and SFARI, Autistica, Autism Speaks. The views expressed are those of the author(s) and not necessarily those of the NHS, MRC, nor IHI-JU2. The funders had no role in the conceptualisation of this study, nor the development of this publication.

Little is known about their stability and the factors that influence their persistence or change over the life-course. To address this, we use data from 158 participants from the Special Needs and Autism Project cohort studied at three time-points from 12 to 23 years. We used latent growth models to study the role of child, family, and contextual characteristics on the conduct, emotional, and attention deficit hyperactivity disorder domains of the parent-reported Strengths and Difficulties Questionnaire. Symptoms decreased significantly over time for all three domains, but many participants still remained above the published cutoffs for likely disorder on at least one of the three domains. Individual trajectories showed high levels of persistence. Higher initial adaptive function and language levels predicted a greater decline in conduct and attention deficit hyperactivity disorder symptoms. In contrast, increased emotional symptoms were predicted by higher language functioning, lower levels of autism symptom severity and higher parental education. Greater neighborhood deprivation was associated with more conduct problems but also a greater decline over time. Our findings highlight that it may be possible to accurately predict mental health trajectories over this time period, which could help parents and carers in planning and help professionals target resources more efficiently.Lay AbstractAlthough mental health problems are common in autism, relatively little is known about their stability and the factors that influence their persistence or change over the life-course. To address this, we use data from the Special Needs and Autism Project (SNAP) cohort studied at three time-points from 12 to 23 years. Using the parent-reported Strengths and Difficulties Questionnaire (SDQ) domains of conduct, emotional, and ADHD symptoms, we evaluated the role of child, family, and contextual characteristics on these three trajectories. Symptoms decreased significantly over time for all three domains, but many participants still scored above the published disorder cutoffs. Individuals showed high levels of persistence. Higher initial adaptive function and language levels predicted a greater decline in conduct and ADHD symptoms. In contrast, higher language functioning was associated with higher levels of emotional symptoms, as was lower levels of autism symptom severity and higher parental education. Those with higher neighborhood deprivation had higher initial conduct problems but a steeper decline over time. Our findings highlight that it may be possible to accurately predict mental health trajectories over this time period, which could help parents and carers in planning and help professionals target resources more efficiently.

Chester Fox,1,2 Wilson Pace,1,3 Elias Brandt,1 Victoria Carter,4,5 Ku-Lang Chang,6 Chelsea Edwards,7 Alexander Evans,4 Gabriela Gaona,1 MeiLan K Han,8 Alan Kaplan,5,9,10 Rachel Kent,1 Janwillem WH Kocks,5,11– 13 Maja Kruszyk,5,7 Le Lievre Chantal,5,7 Tessa LiVoti,4,5 Cathy Mahle,14 Barry Make,15 Amanda Ratigan,1 Asif Shaikh,14 Neil Skolnik,16,17 Brooklyn Stanley,4 Barbara P Yawn,17 David B Price4,5,18 1DARTNet Institute, Aurora, CO, USA; 2University at Buffalo, Buffalo, NY, USA; 3University of Colorado, Denver, CO, USA; 4Optimum Patient Care, Cambridge, UK; 5Observational and Pragmatic Research Institute, Singapore; 6University of Florida College of Medicine, Gainesville, FL, USA; 7Optimum Patient Care, Brisbane, Queensland, Australia; 8University of Michigan, Ann Arbor, MI, USA; 9Family Physician Airways Group of Canada, Stouffville, Ontario, Canada; 10University of Toronto, Toronto, Canada; 11General Practitioners Research Institute, Groningen, the Netherlands; 12Groningen Research Institute Asthma and COPD (GRIAC), University of Groningen, University Medical Center Groningen, Groningen, the Netherlands; 13Department of Pulmonology, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands; 14Boehringer Ingelheim, Ridgefield, CT, USA; 15Department of Medicine, NJH, Denver, CO, USA; 16Abington Jefferson Health, Jenkintown, PA, USA; 17University of Minnesota, Minneapolis, MN, USA; 18Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Aberdeen, UKCorrespondence: David B Price, Centre of Academic Primary Care, Division of Applied Health Sciences, University of Aberdeen, Polwarth Building, Foresterhill, Aberdeen, AB25 2ZD, UK, Tel +65 3105 1489, Email dprice@opri.sgIntroduction: Little is known about the variability in chronic obstructive pulmonary disease (COPD) management and how it may be affected by patient characteristics across different healthcare systems in the US. This study aims to describe demographic and clinical characteristics of people with COPD and compare management across five primary care medical groups in the US.Methods: This is a retrospective observational registry study utilizing electronic health records stored in the Advancing the Patient Experience (APEX) COPD registry. The APEX registry contains data from five US healthcare organizations located in Texas, Ohio, Colorado, New York, and North Carolina. Data on demographic and clinical characteristics of primary care patients with COPD between December 2019 and January 2020 were extracted and compared.Results: A total of 17,192 patients with COPD were included in analysis: Texas (n = 811), Ohio (n = 8722), Colorado (n = 472), New York (n = 1149) and North Carolina (n = 6038). The majority of patients at each location were female (> 54%) and overweight/obese (> 60%). Inter-location variabilities were noted in terms of age, race/ethnicity, exacerbation frequency, treatment pattern, and prevalence of comorbid conditions. Patients from the Colorado site experienced the lowest number of exacerbations per year while those from the New York site reported the highest number. Hypertension was the most common co-morbidity at 4 of 5 sites with the highest prevalence in New York. Depression was the most common co-morbidity in Ohio. Treatment patterns also varied by site; Colorado had the highest proportion of patients not on any treatment. ICS/LABA was the most commonly prescribed treatment except in Ohio, where ICS/LABA/LAMA was most common.Conclusions and Relevance: Our data show heterogeneity in demographic, clinical, and treatment characteristics of patients diagnosed with COPD who are managed in primary care across different healthcare organizations in the US.Keywords: quality of care, observational study, research database, patient-reported outcomes

People with autism spectrum disorder (ASD) are at increased risk of developing co-occurring mental health difficulties across the lifespan. Exposure to adverse life events and parental mental health difficulties are known risk factors for developing a range of mental health difficulties. This study investigates the association of adverse life events, parental stress and mental health with emotional and behavioral problems in young adults with ASD. One hundred and fifteen young adults with ASD derived from a population-based longitudinal study were assessed at three time-points (12-, 16-, and 23-year) on questionnaire measures of emotional and behavioral problems. Parent-reported exposure to adverse life events and parental stress/mental health were measured at age 23. We used structural equation modeling to investigate the stability of emotional and behavioral problems over time, and the association between adverse life events and parental stress and mental health and emotional and behavioral outcomes at 23-year. Our results indicate that exposure to adverse life events was significantly associated with increased emotional and behavioral problems in young adults with ASD, while controlling for symptoms in childhood and adolescence. Higher reported parental stress and mental health difficulties were associated with a higher frequency of behavioral, but not emotional problems, and did not mediate the impact of adverse life events. These results suggest that child and adolescent emotional and behavioral problems, exposure to life events and parent stress and mental health are independently associated, to differing degrees, with emotional or behavioral outcomes in early adulthood. LAY SUMMARY: People with autism experience high rates of mental health difficulties throughout childhood and into adult life. Adverse life events and parental stress and mental health may contribute to poor mental health in adulthood. We used data at three time points (12-, 16-, and 23-year) to understand how these factors relate to symptoms at 23-year. We found that emotional and behavioral problems in childhood, adverse life events and parent mental health were all associated with increased emotional and behavioral problems in adulthood.

PURPOSE: To describe demographic and clinical characteristics of chronic obstructive pulmonary disease patients managed in US primary care. METHODS: This was an observational registry study using data from the Chronic Obstructive Pulmonary Disease (COPD) Optimum Patient Care DARTNet Research Database from which the Advancing the Patient Experience COPD registry is derived. Registry patients were aged ≥35 years at diagnosis. Electronic health record data were collected from both registries, supplemented with patient-reported information/outcomes from the Advancing the Patient Experience registry from 5 primary care groups in Texas, Ohio, Colorado, New York, and North Carolina (June 2019 through November 2020). RESULTS: Of 17,192 patients included, 1,354 were also in the Advancing the Patient Experience registry. Patients were predominantly female (56%; 9,689/17,192), White (64%; 9,732/15,225), current/ex-smokers (80%; 13,784/17,192), and overweight/obese (69%; 11,628/16,849). The most commonly prescribed maintenance treatments were inhaled corticosteroid with a long-acting β(2)-agonist (30%) and inhaled corticosteroid with a long-acting muscarinic antagonist (27%). Although 3% (565/17,192) of patitents were untreated, 9% (1,587/17,192) were on short-acting bronchodilator monotherapy, and 4% (756/17,192) were on inhaled corticosteroid monotherapy. Despite treatment, 38% (6,579/17,192) of patients experienced 1 or more exacerbations in the last 12 months. These findings were mirrored in the Advancing Patient Experience registry with many patients reporting high or very high impact of disease on their health (43%; 580/1,322), a breathlessness score 2 or more (45%; 588/1,315), and 1 or more exacerbation in the last 12 months (50%; 646/1,294). CONCLUSIONS: Our findings highlight the high exacerbation, symptom, and treatment burdens experienced by COPD patients managed in US primary care, and the need for more real-life effectiveness trials to support decision making at the primary care level.

ObjectiveFor the first time, we use a longitudinal population-based autism cohort to chart the trajectories of cognition and autism symptoms from childhood to early adulthood and identify features that predict the level of function and change with development.MethodLatent growth curve models were fitted to data from the Special Needs and Autism Project cohort at three time points: 12, 16, and 23 years. Outcome measures were IQ and parent-reported Social Responsiveness Scale autism symptoms. Of the 158 participants with an autism spectrum disorder at 12 years, 126 (80%) were reassessed at 23 years. Child, family, and contextual characteristics obtained at 12 years predicted intercept and slope of the trajectories.ResultsBoth trajectories showed considerable variability. IQ increased significantly by a mean of 7.48 points from 12 to 23 years, whereas autism symptoms remained unchanged. In multivariate analysis, full-scale IQ was predicted by initial language level and school type (mainstream/specialist). Participants with a history of early language regression showed significantly greater IQ gains. Autism symptoms were predicted by Social Communication Questionnaire scores (lifetime version) and emotional and behavioral problems. Participants attending mainstream schools showed significantly fewer autism disorder symptoms at 23 years than those in specialist settings; this finding was robust to propensity score analysis for confounding.ConclusionOur findings suggest continued cognitive increments for many people with autism across the adolescent period, but a lack of improvement in autism symptoms. Our finding of school influences on autism symptoms requires replication in other cohorts and settings before drawing any implications for mechanisms or policy.

Many young people with autism spectrum disorder display 'challenging behaviours', characterised by externalising behaviour and self-injurious behaviours. These behaviours can have a negative impact on a young person's well-being, family environment and educational achievement. However, the development of effective interventions requires greater knowledge of autism spectrum disorder-specific models of challenging behaviours. Autism spectrum disorder populations are found to demonstrate impairments in different cognitive domains, namely social domains, such as theory of mind and emotion recognition, but also non-social domains such as executive functioning and sensory or perceptual processing. Parent-rated self-injurious behaviour and externalising behaviours, and neurocognitive performance were assessed in a population-derived sample of 100 adolescents with autism spectrum disorder. Structural equation modelling was used to estimate associations between cognitive domains (theory of mind, emotion recognition, executive functioning and perceptual processing) and self-injurious behaviour and externalising behaviours. Poorer theory of mind was associated with increased self-injurious behaviour, whereas poorer perceptual processing was associated with increased externalising behaviours. These associations remained when controlling for language ability. This is the first analysis to examine how a wide range of neurocognitive domains relate to challenging behaviours and suggests specific domains that may be important targets in the development of interventions in adolescents with autism spectrum disorder.

Anxiety is a prevalent and impairing co-morbidity among individuals with autism spectrum disorder (ASD), yet assessment measures, including screening tools, are seldom validated with autism samples. We explored the psychometric properties of the child and parent reports of the Spence Children’s Anxiety Scale (SCAS) and the Screen for Anxiety Related Disorder-71 (SCARED-71) with 49 males with ASD (10–16 years, 63% co-occurring anxiety). Both measures had excellent internal consistency and fair-good parent–child agreement. The SCAS has a higher proportion of items evaluating observable behaviors. Predictive power of the measures did not differ. Higher cut-points in the parent reports (SCARED only) and lower cut-points in the child reports may enhance prediction in this sample. Choice of measure and cut-points should be considered alongside intended purpose.

This chapter reviews the current knowledge about the prevalence of and risk factors associated with anxiety disorders in individuals with autism spectrum disorder (ASD). Prevalence rates for a diagnosis of an anxiety disorder are considered only from studies that use clinical diagnostic interviews. We report that anxiety disorders are common in individuals with ASD and overall prevalence rates for anxiety disorders as an aggregate group range between 42% and 79%. The prevalence rates for individual anxiety disorders are variable. Specific phobia, obsessive compulsive disorder, and social anxiety disorder are the most common but the rate and type of anxiety disorders may vary across age and ability level. Challenges in measuring anxiety in ASD and factors that may contribute to variation in overall rates and those for specific disorders are discussed. The objective of summarizing the research literature on anxiety in ASD to date is to set out clear guidelines for the future direction of research and also interpret the findings to highlight the key clinical implications.

This study examines the potential for point-of-decision prompts (PDPs) to promote healthier food choices among shoppers in a rural, low-income, minority community. We hypothesized that a narrowly defined PDP (focused on fresh produce) would be easier for shoppers to remember than a broadly defined PDP (focused on any healthy items), resulting in a higher proportion of healthy items purchased. PDPs were placed at the entrance to a supermarket in Mission, South Dakota, United States of America, on the Rosebud Sioux Reservation for alternating time periods, July 9-10, 2017. Sales records from 653 transactions were retrieved from the supermarket, comprising periods in which PDPs were in place and control periods. We examined the proportion of selected items and proportion of total expenditures that were a) any healthy foods and b) fresh fruits and vegetables. Data were analyzed in 2018. The narrowly defined prompt consistently resulted in a higher proportion of items and expenditures on healthy foods than either the broad prompt or the control condition. Shoppers in the narrow prompt condition purchased and spent significantly more on any healthy foods and fresh produce than shoppers in the control condition. While shoppers in the narrow prompt condition purchased more healthy foods and fresh produce than shoppers in the broad prompt condition, the differences were not statistically significant. Shoppers exposed to the narrow PDP consistently purchased more healthy foods than shoppers in a control group, while shoppers in the broad PDP did not, highlighting the importance of considering cognitive processes when designing health promotion messages.

This paper critically evaluates the Law Commission’s recommendations as presented in the Commission’s report reviewing Part IV of the Protection of Personal Property Rights Act 1988. This legislation defines the scope for enduring powers of attorney (EPAs). The paper advocates that the establishment of a central register for EPAs will be of substantial benefit, as it will provide an effective means of monitoring the use and misuse of EPAs. The paper concentrates on the effects of the current regime on older people, and it interviews six individuals who are actively engaged in work with older people in the Wellington region to identify the main areas of concern surrounding EPAs. The focus of the interviews was developed from the Law Commission’s recommendations against the establishment of a central register. The paper identifies some very real concerns with the current law's ability to curb the misuse of EPAs which leave older people open to abuse. It concludes that the Law Commission needs to re-evaluate the issue of misuse of EPAs as its report does not adequately deal with current flaws in the law.

The gene coding for a Na+,K+-ATPase α subunit (ATP1A3) has been localized to the q12aq13.2 region of human chromosome 19, potentially close to the myotonic dystrophy (DM) gene. In view of previous studies implicating a Na+,K+-ATPase in the pathology of DM, we have examined the possibility that ATP1A3 is a candidate for the DM locus. Although linked, several clear instances of recombination between ATP1A3 and DM rule out the possibility that mutations in ATP1A3 cause the disease. Examination of multiply informative pedigrees indicates the gene order DM-APOC2-ATP1A3.