"It Is a Big Spider Web of Things": Sensory Experiences of Autistic Adults in Public Spaces.

Background: Sensory processing differences are commonly experienced by autistic individuals, and some sensory experiences can greatly impact the mental health and quality of life of individuals. Previous research suggests that adapting the sensory nature of environments may improve individual experiences and engagement with these spaces. However, knowledge about which public places are particularly disabling is limited, especially from the perspective of autistic individuals. Little is also known about what in the sensory environment makes them particularly disabling. Methods: In this participatory research study, we investigated the sensory experiences of autistic adults in public spaces. We used an online focus group method, recruiting 24 autistic adults across 7 focus groups. We applied content analysis, reflexive thematic analysis, and case study analysis. Results: The results of the content analysis showed that supermarkets, eateries (i.e., restaurants, cafés, pubs), highstreets and city/town centers, public transport, health care settings (i.e., doctor's surgeries and hospitals), and retail shops and shopping centers are experienced to be commonly disabling sensory environments for autistic adults. However, outdoor spaces, retail shops, museums, concert venues/clubs, cinemas/theaters, and stadiums are identified to be commonly less disabling sensory environments. In addition, through reflexive thematic analysis we identified 6 key principles that underlie how disabling or enabling sensory environments are: Sensoryscape (sensory environment), Space, Predictability, Understanding, Adjustments, and Recovery. We represented these principles as a web to emphasize the interconnected, dimensional spectrum of the different themes. Lastly, we used case study analysis to evidence these principles in the commonly disabling sensory environments for richer detail and context and to provide credibility for the principles. Conclusions: Our findings have important implications for businesses, policy, and built environment designers to reduce the sensory impact of public places to make them more enabling for autistic people. By making public spaces more enabling, we may be able to improve quality of life for autistic individuals.

Why was this study done?: Autistic people often experience differences in sensory processing, such as finding bright lights and sounds overwhelming and painful. This has been linked to poorer quality of life and mental health. Not much is known about how public places could be changed to be less disabling for autistic adults. What was the purpose of this study?: We aimed to find out which public places are disabling for autistic adults due to the sensory environment, and what about these places makes them especially challenging. What did the researchers do?: We invited autistic adults to take part in online focus groups to tell us about their sensory experiences in public places. In total, 24 people took part across 7 focus groups. We analysed the data 3 ways: 1) we conducted content analysis, identifying categories of words or phrases that share meaning to find commonly disabling and enabling places; 2) we conducted reflexive thematic analysis, developing themes and sub-themes from trends in the data to understand how sensory environments can be experienced as disabling or enabling; and 3) we conducted case study analysis, to see if the themes and sub-themes were present in the commonly disabling environments. What were the results of the study?: We found that supermarkets, eateries (i.e., restaurants, cafés, pubs), highstreets and city/town centres, public transport, healthcare settings (i.e., doctor's surgeries and hospitals), and retail shops and shopping centres, were most often mentioned as being disabling sensory environments. But, outdoor spaces, retail shops, museums, concert venues/clubs, cinemas/theatres, and stadiums were most often talked about as being less disabling sensory environments. We also identified principles that can make these environments either disabling or enabling. These included Sensoryscape or the `sensory landscape' (sensory burden, sustained and inescapable input, uncontrollable environment), Space (busy and crowded, confined the built environment is), Predictably (lack of information, inconsistent and unfamiliar, and uncertainty), Understanding (unsupportive people, misunderstanding and judgement), Adjustments (suitable adjustments, pace pressures, inflexible communication), and Recovery (space to escape, unable to recover and prepare). Last, we showed in more detail what these principles look like in the different disabling public places. What do these findings add to what was already known?: Our findings add to our understanding about how autistic adults experience public places; particularly, that there are a range of external factors linked with sensory processing differences which can make public places disabling. What are potential weaknesses in the study?: Our study could have recruited a more diverse range of autistic individuals, such as those with cooccurring intellectual disability. It is important to understand experiences from a diverse range of autistic people to ensure that outcomes from research can improve the lives of all autistic people. How will these findings help autistic adults now or in the future?: Our findings provide insights into how public places could be improved so that they can become more enabling environments for autistic people. This is important for businesses, policy, and the design of spaces to make public places more accessible, improving mental wellbeing and quality of life for autistic individuals.

Safety, Effectiveness, and Treatment Persistence of Subcutaneous Vedolizumab in IBD: A Multicenter Study From the United Kingdom.

BACKGROUND AND AIMS: Despite intravenous (IV) vedolizumab being established for treatment of inflammatory bowel disease (IBD), the novel subcutaneous (SC) route of administration may provide numerous incentives to switch. However, large-scale real-world data regarding the long-term safety and effectiveness of this strategy are lacking. METHODS: IBD patients on IV vedolizumab across 11 UK sites agreed to transition to SC injections or otherwise continued IV treatment. Data regarding clinical disease activity (Simple Clinical Colitis Activity Index, partial Mayo score, and modified Harvey-Bradshaw Index), biochemical markers (C-reactive protein and calprotectin), quality of life (IBD control), adverse events, treatment persistence, and disease-related outcomes (namely corticosteroid use, IBD-related hospitalization, and IBD-related surgery) were retrospectively collected from prospectively maintained clinical records at baseline and weeks 8, 24, and 52. RESULTS: Data from 563 patients (187 [33.2%] Crohn's disease, 376 [66.8%] ulcerative colitis; 410 [72.8%] SC, 153 [27.2%] IV) demonstrated no differences in disease activity, remission rates, and quality of life between the SC and IV groups at all time points. Drug persistence at week 52 was similar (81.1% vs 81.2%; P = .98), as were rates of treatment alteration due to either active disease (12.2% vs 8.9%; P = .38) or adverse events (3.3% vs 6.3%; P = .41). At week 52, there were equivalent rates of adverse events (9.8% vs 7.8%; P = .572) and disease-related outcomes. IBD control scores were equivalent in both IV-IV and IV-SC groups. CONCLUSIONS: Switching to SC vedolizumab appears as effective, safe, and well tolerated as continued IV treatment and maintains comparable disease control and quality of life as IV treatment at 52 weeks.

Assessment of steroid use as a key performance indicator in inflammatory bowel disease-analysis of data from 2385 UK patients.

BACKGROUND: Patients with IBD are at risk of excess corticosteroids. AIMS: To assess steroid excess in a large IBD cohort and test associations with quality improvement and prescribing. METHODS: Steroid exposure was recorded for outpatients attending 19 centres and associated factors analysed. Measures taken to avoid excess were assessed. RESULTS: Of 2385 patients, 28% received steroids in the preceding 12 months. 14.8% had steroid excess or dependency. Steroid use was significantly lower at 'intervention centres' which participated in a quality improvement programme (exposure: 23.8% vs 31.0%, P < .001; excess 11.5% vs 17.1%, P < .001). At intervention centres, steroid use fell from 2015 to 2017 (steroid exposure 30.0%-23.8%, P = .003; steroid excess 13.8%-11.5%, P = .17). Steroid excess was judged avoidable in 50.7%. Factors independently associated with reduced steroid excess in Crohn's disease included maintenance with anti-TNF agents (OR 0.61 [95% CI 0.24-0.95]), treatment in a centre with a multi-disciplinary team (OR 0.54 [95% CI 0.20-0.86]) and treatment at an intervention centre (OR 0.72 [95% CI 0.46-0.97]). Treatment with 5-ASA in CD was associated with higher rates of steroid excess (OR 1.72 [95% CI 1.24-2.09]). In ulcerative colitis (UC), thiopurine monotherapy was associated with steroid excess (OR 1.97 [95% CI 1.19-3.01]) and treatment at an intervention centre with less steroid excess (OR 0.72 [95% CI 0.45-0.95]). CONCLUSIONS: This study validates steroid assessment as a meaningful quality measure and provides a benchmark for this performance indicator in a large cohort. A programme of quality improvement was associated with lower steroid use.