"I am afraid of being treated badly if I show it": A cross-sectional study of healthcare accessibility and Autism Health Passports among UK Autistic adults.

BACKGROUND: Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality. AIM: To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant. METHODS: We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis. FINDINGS: Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP. CONCLUSIONS: Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people.

Unique dietary and oral hygiene behaviors in a cohort with clinically severe obesity: A cross sectional study.

BACKGROUND: An association between increased risk of dental caries with increased levels of clinically severe obesity has been reported. Data linking body mass index (BMI) and dietary behaviors, including at-risk dietary factors and oral hygiene habits, are lacking in a cohort with clinically severe obesity. This study aimed to explore the dietary and oral hygiene behaviors in individuals with clinically severe obesity attending a hospital-based obesity service. METHODS: Adult patients attending a hospital-based obesity service in Greater Western Sydney with clinically severe obesity were invited to participate in a self-administered survey, which collected data on their nutritional and oral hygiene behaviors. Demographic data (age, gender) and BMI were extracted from the participants' medical records. The primary outcome was the relationship between BMI and frequency of toothbrushing. RESULTS: Of the 82 individuals who consented to participate, 81 (98.8%) completed the study questionnaire. The median BMI of the cohort was 49.1 kg/m2 (interquartile range [IQR]: 43.2-57.3 kg/m2) and median age 51 (IQR: 39-63) years. BMI was not significantly correlated with individual oral health behaviors (p > .05). Many participants reported dietary risk behaviors, which have the potential to influence their oral health. CONCLUSIONS: While oral health behaviors were not associated with increasing BMI, patients with clinically severe obesity in this study reported unique dietary behaviors and mixed oral hygiene habits that may complicate nutritional and dental management. Awareness of these behaviors among clinicians including dental professionals is required in this cohort.

'Building our own house' as an insider-only Community-Partnered Participatory Research Council: Co-creating a safe space for Autistic knowledge production.

LAY ABSTRACT: In recent years, there has been a growing call for participatory Autism research (i.e. research that meaningfully involves Autistic people in its design and delivery). Community Partnered Participatory Research is a research methodology that aims to share power between researchers and members of the researched community. There is some precedent for Community Partnered Participatory Research in Autism research, but it is still quite uncommon. At the start of our new research study (called Autism: From Menstruation to Menopause), we created a community council. For the first six meetings, our council was made up of four Autistic community members who were experienced in Autism advocacy and activism and three Autistic researchers. We seven are the authors of this article. In these first six meetings, we made plans for recruiting a larger number of lay community members who would join us later for the rest of the project (8 years in total). In this article, we describe and reflect what it felt like during these first six meetings to be part of a community research council where everybody is Autistic. We discuss how we co-created a safe space, how we helped each other feel valued and how we worked together to support each other's sometimes-differing access needs so that everyone could fully participate. We provide recommendations for how to support Autistic people to lead research on their own terms with their unique insights.

Evaluating Gabapentin Dosing, Efficacy and Safety in Infants.

OBJECTIVE: Gabapentin for management of neuropathic pain, irritability, neonatal abstinence syndrome, rescue sedation, feeding intolerance and visceral hyperalgesia in infants has grown over the past decade. There remains little guidance for indications, initiation, titration and maintenance dosing trends and assessment of outcomes. The primary objective was to describe gabapentin dosing, and the secondary objectives were to identify outcomes to assess efficacy and describe weaning practices. METHODS: A retrospective single-center study was performed in infants younger than 1 year who received gabapentin at Boston Children's Hospital between 2015 and 2021. The primary outcome was indication, initiation and maximum gabapentin dose. Secondary outcomes included mortality, adverse reactions and impact on feeding volumes, weight-for-age Z-scores and face, legs, activity, cry, consolability (FLACC) scores. Descriptive statistics were utilized. RESULTS: Sixty-six infants received gabapentin at a mean ± SD age of 5.5 ± 2.7 months (range of 0-11 months). The mean ± SD initiation dose of gabapentin was 8.6 ± 5.4 mg/kg/day with a median interval of 24 hours (8-24 hours). The maximum mean dose was 23.2 ± 14.4 mg/kg/day at a median interval of every 8 hours (8 hours). The most common indications for initiation were irritability, rescue sedation, and visceral hyperalgesia. There was a statistical improvement in weight-for-age Z scores from 24 hours prior to gabapentin initiation to 2 weeks after the maximum dose of gabapentin (-2.23 ± 1.78 to -1.66 ± 1.91, p < 0.001) and a reduction in FLACC scores (2.29 ± 1.64 to 1.52 ± 1.76, p = 0.007) from 24 hours prior to gabapentin initiation to 3 days after the maximum dose of gabapentin. Three patients experienced minor adverse events. CONCLUSIONS: Gabapentin was well tolerated in infants. Initial gabapentin dosing of 5 mg/kg/dose every 24 hours appears safe and consistent with other published studies in infants. The improvement in outcomes with few adverse events suggests a beneficial role for gabapentin.

Inequities in Technology Access and Digital Health Literacy Among Patients With Dermatologic Conditions: Cross-Sectional Analysis of the National Health Interview Survey.

Certain sociodemographic factors are associated with low technology access and digital healthy literacy.

Developing a Decision Aid for Clinical Obesity Services in the Real World: the DACOS Nationwide Pilot Study.

PURPOSE: The purpose of this study is to develop a decision aid tool using "real-world" data within the Australian health system to predict weight loss after bariatric surgery and non-surgical care. MATERIALS AND METHODS: We analyzed patient record data (aged 16+years) from initial review between 2015 and 2020 with 6-month (n=219) and 9-/12-month (n=153) follow-ups at eight clinical obesity services. Primary outcome was percentage total weight loss (%TWL) at 6 months and 9/12 months. Predictors were selected by statistical evidence (p<0.20), effect size (±2%), and clinical judgment. Multiple linear regression and bariatric surgery were used to create simple predictive models. Accuracy was measured using percentage of predictions within 5% of the observed value, and sensitivity and specificity for predicting target weight loss of 5% (non-surgical care) and 15% (bariatric surgery). RESULTS: Observed %TWL with bariatric surgery vs. non-surgical care was 19% vs. 5% at 6 months and 22% vs. 5% at 9/12 months. Predictors at 6 months with intercept (non-surgical care) of 6% include bariatric surgery (+11%), BMI>60 (-3%), depression (-2%), anxiety (-2%), and eating disorder (-2%). Accuracy, sensitivity, and specificity were 58%, 69%, and 56%. Predictors at 9/12 months with intercept of 5% include bariatric surgery (+15%), type 2 diabetes (+5%), eating disorder (+4%), fatty liver (+2%), atrial fibrillation (-4%), osteoarthritis (-3%), sleep/mental disorders (-2-3%), and ≥10 alcohol drinks/week (-2%). Accuracy, sensitivity, and specificity were 55%, 86%, and 53%. CONCLUSION: Clinicians may use DACOS to discuss potential weight loss predictors with patients after surgery or non-surgical care.

Teamwork matters: team situation awareness to build high-performing healthcare teams, a narrative review.

Healthcare today is the prerogative of teams rather than of individuals. In acute care domains such as anaesthesia, intensive care, and emergency medicine, the work is complex and fast-paced, and the team members are diverse and interdependent. Three decades of research into the behaviours of high-performing teams provides us with clear guidance on team training, demonstrating positive effects on patient safety and staff wellbeing. Here we consider team performance through the lens of situation awareness. Maintaining situation awareness is an absolute requirement for safe and effective patient management. Situation awareness is a dynamic process of perceiving cues in the environment, understanding what they mean, and predicting how the situation may evolve. In the context of acute clinical care, situation awareness can be improved if the whole team actively contributes to monitoring the environment, processing information, and planning next steps. In this narrative review, we explore the concept of situation awareness at the level of the team, the conditions required to maintain team situation awareness, and the relationship between team situation awareness, shared mental models, and team performance. Our ultimate goal is to help clinicians create the conditions required for high-functioning teams, and ultimately improve the safety of clinical care.

"It felt like I had an old fashioned telephone ringing in my breasts": An online survey of UK Autistic birthing parents' experiences of infant feeding.

Around 3% of people are Autistic. Autistic people communicate differently from non-Autistic people and experience the sensory world differently. There is limited evidence that Autistic people can face additional barriers to breastfeeding. We are an Autistic-led research team that developed an online survey following consultation with the Autistic community. Autistic people from the UK who had been pregnant were eligible to take part in the survey, which focused on the entire maternity journey. A total of 193 people participated, of whom 152 had experiences of infant feeding (137 breastfeeding, 82 formula feeding). Participants were highly motivated to breastfeed, and almost half of those who breastfed found it positive always or most of the time. However, breastfeeding-and in particular the milk let-down reflex-could result in pain and sensory difficulties, including 'feeling odd'. Expressing breastmilk always or most of the time was reported by 10% of breastfeeding participants. The intensity and unpredictability of both breast and formula feeding were challenging to manage. Parents reported that it was easy to understand how to prepare infant formula, but that it could also be a negative and anxiety-inducing experience. Support for breast and formula feeding was often considered inadequate. When parents did access breastfeeding support, this significantly improved a range of breastfeeding experiences. However, participants recommended more tailored support and continuity of carer. To meet the needs of Autistic birthing parents, those providing infant feeding support should receive training on Autism through a neurodiversity-affirming lens, which should be delivered by Autistic people.

Peer evaluations in an anonymous and open system: Intern reactions and evaluation analysis.

PURPOSE: Feedback and evaluation from peers is fundamental to trainees' professional development but may be uncomfortable to provide non-anonymously. We aimed to understand resident perception of anonymous and open written evaluation systems and to analyze evaluations in each of these systems. MATERIALS AND METHOD: We compared two years of intern peer evaluations at a large United States-based pediatric residency program - the 2018-2019 and 2019-2020 years during which intern peer evaluations were anonymous and open, respectively. We electronically surveyed interns about their perceptions of peer evaluations and analyzed four aspects of the evaluations themselves: (1) orientation, (2) caliber, (3) Likert-scale, and (4) word count. RESULTS: 40 (78%) and 38 (75%) interns participated in the survey in the anonymous and open years, respectively. Respondents reported being more likely to avoid writing constructive comments in the open year. There were more high caliber comments in the open year. Likert-scale ratings of peers were lower in the open year. Word count was longer in the open year. CONCLUSIONS: While interns expressed more discomfort evaluating peers in an open evaluation system, they wrote longer and more high caliber comments in an open system than in an anonymous system. Residency programs should consider professional development in writing peer evaluation.

Residents are uncomfortable writing constructive comments in peer evaluations, particularly in open formats.Residents write similar numbers of constructive comments whether the evaluation is delivered anonymously or in an open format.Residents write more high caliber comments when evaluations are delivered in an open format than when delivered anonymously.Residents write longer comments when evaluations are in an open format.Program leaders should weigh the increased number of high caliber peer evaluations in an open system with resident preference for an anonymous system when designing their peer evaluation systems.

Experiences of transition from hospital to community living via the Pathways to Community Living Initiative: A qualitative evaluation study of service users and family members.

OBJECTIVE: People with severe and persistent mental illness (SPMI) may be excluded from community-based care if their complex support needs cannot be met and are at risk of institutionalisation. The Pathways to Community Living Initiative (PCLI) aims to address barriers to community living. This study evaluated the PCLI from the perspective of service users and family members. METHODS: Evaluation questions were explored in semi-structured interviews. Transcripts were coded inductively and deductively. This article adheres to relevant EQUATOR standards for qualitative research and reporting. RESULTS: There were 37 interviews with 27 service users and 12 family members. Factors associated with positive experiences of transition from hospital included detailed planning, personalised care, and staged transitions which alleviated concerns around safety, support, and coping. Community living provided opportunities to exercise greater choice and control in everyday life and, for some, to reconnect with family. Poor physical health and social isolation were noted as potential risks. CONCLUSIONS: Participants regarded community living as preferable to hospital settings, and highly valued their freedom. They reported that clinical, aged care and disability supports helped them. Additional support may be required to improve physical health and social connectedness, and families appear to have unmet needs for psychosocial support.

Weight stigma among dental professionals and in the dental setting: a scoping review.

Background Weight stigma refers to discriminatory acts and ideologies targeted towards individuals because of their body weight and/or size. Weight stigma in healthcare settings generates major health disparities. To date, there have been no previous reviews exploring the issue of weight stigma among dental professionals (DPs) and in the dental setting.Aims To synthesise current evidence on weight stigma among DPs and in dental care settings via a scoping review.Methods A comprehensive search was carried out across four relevant electronic databases (Medline, Scopus, Psychinfo and Cinahl). A total of 25 full-text papers were included in the scoping review.Results Most papers addressed the subject of weight stigma as a secondary finding (20 papers). Both quantitative and qualitative study methods were used to explore weight stigma across the broad categories of attitudes and beliefs about obesity, weight-based discussions, obesity education and training and service implications of obesity. Recommendations regarding weight stigma among DPs and in the dental setting were proposed but have not been formally assessed.Conclusion Further studies addressing weight stigma in dental settings, including causes and consequences among DPs, are required to better inform and address this issue.

Evaluation of a mental health service reform program, the Pathways to Community Living Initiative, for people with severe mental illness and complex needs.

OBJECTIVE: The Pathways to Community Living Initiative (PCLI) aims to reform mental health care for people with severe and persistent mental illness (SPMI) and complex needs. This study reports independent evaluation findings on transitions from hospital and practice change in mental health services. METHODS: Data for this mixed-methods evaluation were obtained from administrative collections and semi-structured interviews with PCLI program managers, teams and executive leads; aged care managers; and leaders in inpatient, community and older people's mental health services. RESULTS: Between July 2015 and December 2020, 674 participants (67% of those eligible for the PCLI) were transitioned from hospital to community. Of those transitioned, 21 required subsequent long-stay admissions. The PCLI introduced resources, clearly defined processes, and state-wide networks to guide changes in practice which are becoming embedded in the operations and governance of mental health services across New South Wales. CONCLUSIONS: Severe and persistent mental illness and complex needs can be managed in community settings with highly individualised planning and care, supported by specialised clinical teams in partnership with mental health, aged care and disability services. Evaluation findings highlight the importance of continued investment in rehabilitation psychiatry.

Leopard density and the ecological and anthropogenic factors influencing density in a mixed-use landscape in the Western Cape, South Africa.

Large carnivores face numerous threats, including habitat loss and fragmentation, direct killing, and prey depletion, leading to significant global range and population declines. Despite such threats, leopards (Panthera pardus) persist outside protected areas throughout most of their range, occupying diverse habitat types and land uses, including peri-urban and rural areas. Understanding of leopard population dynamics in mixed-use landscapes is limited, especially in South Africa, where the majority of leopard research has focused on protected areas. We use spatially explicit capture-recapture models to estimate leopard density across a mixed-use landscape of protected areas, farmland, and urban areas in the Overberg region of the Western Cape, South Africa. Data from 86 paired camera stations provided 221 independent captures of 25 leopards at 50 camera trap stations with a population density estimate of 0.64 leopards per 100 km2 (95% CI: 0.55-0.73). Elevation, terrain ruggedness, and vegetation productivity were important drivers of leopard density in the landscape, being highest on elevated remnants of natural land outside of protected areas. These results are similar to previous research findings in other parts of the Western Cape, where high-lying natural vegetation was shown to serve as both a refuge and a corridor for leopard movement in otherwise transformed landscapes. Given the low leopard density and the prevalence of transformed land intermixed with patches of more suitable leopard habitat, prioritising and preserving connectivity for leopards is vital in this shared landscape. Ecological corridors should be developed in partnership with private landowners through an inclusive and multifaceted conservation strategy which also incorporates monitoring of and rapid mitigation of emerging threats to leopards.

A realist review of health passports for Autistic adults.

BACKGROUND: Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. METHODS: We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the Context, Mechanisms and Outcomes (CMOs) associated with each AHP tool. FINDINGS: 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. Interventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. Mechanisms were often not stated or were inferred by the reviewers and lacked specificity. Outcomes were included in four studies and were primarily focused on AHP uptake, rather than Outcomes which measured impact. CONCLUSION: There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone in a healthcare Context that does not meet Autistic needs, without the inclusion of the local Autistic community developing the tool, and a wider intervention to reduce known barriers to health inequality, may mean that AHPs do not trigger any Mechanisms, and thus cannot affect Outcomes.

Barriers to progression through Australian obesity management pathways: Survey data from the ACTION-IO study.

BACKGROUND AND OBJECTIVES: Our previous work uncovered a nine-year delay, from when Australian people with obesity (PwO) first began struggling with excess weight and first discussed weight with a healthcare professional (HCP). In this study we explore barriers to having an obesity consultation, making and discussing the diagnosis of obesity and arranging a management plan, including a follow-up appointment. METHOD: Australian PwO (n = 1000) and HCPs (n = 200; 50% general practitioners [GPs]), completed the Awareness, Care & Treatment In Obesity Management - An International Observation (ACTION-IO) online survey. RESULTS: Of Australian PwO, 53% had discussed weight with an HCP in the past five years, 25% were informed of their obesity diagnosis and 15% had weight-related follow-up appointments scheduled. Fewer GPs than other specialists reported recording obesity diagnoses, but GPs scheduled more follow-up appointments. Receiving formal obesity training was reported by 22% of GPs and 44% of other specialists. DISCUSSION: Barriers to obesity care in Australia include unrealistic expectations from both PwO and HCPs, lack of evidence-based strategies and insufficient training. Further exploration of barriers is required.

Surface and subsurface oceanographic features drive forage fish distributions and aggregations: Implications for prey availability to top predators in the US Northeast Shelf ecosystem.

Forage fishes are a critical food web link in marine ecosystems, aggregating in a hierarchical patch structure over multiple spatial and temporal scales. Surface-level forage fish aggregations (FFAs) represent a concentrated source of prey available to surface- and shallow-foraging marine predators. Existing survey and analysis methods are often imperfect for studying forage fishes at scales appropriate to foraging predators, making it difficult to quantify predator-prey interactions. In many cases, general distributions of forage fish species are known; however, these may not represent surface-level prey availability to predators. Likewise, we lack an understanding of the oceanographic drivers of spatial patterns of prey aggregation and availability or forage fish community patterns. Specifically, we applied Bayesian joint species distribution models to bottom trawl survey data to assess species- and community-level forage fish distribution patterns across the US Northeast Continental Shelf (NES) ecosystem. Aerial digital surveys gathered data on surface FFAs at two project sites within the NES, which we used in a spatially explicit hierarchical Bayesian model to estimate the abundance and size of surface FFAs. We used these models to examine the oceanographic drivers of forage fish distributions and aggregations. Our results suggest that, in the NES, regions of high community species richness are spatially consistent with regions of high surface FFA abundance. Bathymetric depth drove both patterns, while subsurface features, such as mixed layer depth, primarily influenced aggregation behavior and surface features, such as sea surface temperature, sub-mesoscale eddies, and fronts influenced forage fish diversity. In combination, these models help quantify the availability of forage fishes to marine predators and represent a novel application of spatial models to aerial digital survey data.

The clinical utility of routine postoperative hemoglobin and creatinine after reconstructive surgery for apical pelvic organ prolapse.

INTRODUCTION AND HYPOTHESIS: Postoperative laboratory tests are routinely ordered after apical prolapse repair on asymptomatic patients. We hypothesize that routine serum hemoglobin (Hb) and creatinine (Cr) have limited clinical utility in the postoperative period in asymptomatic patients. METHODS: This is a retrospective cohort study of patients who underwent surgical repair of apical prolapse between 2017 and 2019 at our institution. Subjects were divided into two groups postoperatively: symptomatic and asymptomatic anemia. Symptomatic patients were defined as having one or more of the following: blood pressure (BP) <90/60, heart rate (HR) >100, urine output <30 cc/h, subjective dizziness, flank pain, or abdominal pain. The primary aim was to evaluate the utility of postoperative serum Hb and Cr in symptomatic and asymptomatic patients. Fisher's exact and Mann-Whitney tests analyzed categorical and continuous data respectively. A total of 325 patients were included. RESULTS: Patients with symptomatic anemia had a larger decrease in Hb on postoperative day 1 (POD1) with a mean decrease of -18.11% (± 6.64) compared with asymptomatic patients, who had a mean difference of -15.49% (± 5.63; p < 0.001). The total cost of tests evaluating Hb was US$61,745. Patients with symptomatic acute kidney injury had an increase in Cr on POD1 compared with asymptomatic patients, with a mean increase of 0.23% (± 16.06) and -3.07% (± 13.10) respectively (p < 0.05). The total cost of tests including Cr was US$131,812. CONCLUSIONS: Our results indicate that routine postoperative Hb and Cr testing for apical prolapse should be reserved for symptomatic patients as it has minimal clinical value in asymptomatic patients and contributes to increased overall health care cost.

Circulating soluble CD163 as a potential biomarker of diabetes complications.

AIMS: To investigate whether soluble CD163 (sCD163) is altered in those with diabetes and various subtypes of complications and non-alcoholic fatty liver disease (NAFLD), and whether it can assess disease complications and severity in people with diabetes. METHODS: Adults with diabetes (n = 101) were recruited and assessed for the presence of any complications (D+Comps). Liver steatosis presence was determined by ultrasound and liver stiffness measurement (LSM) by transient elastography. Liver pathology other than non-alcoholic steatohepatitis (NASH) was excluded. Plasma sCD163 was measured by ELISA. RESULTS: sCD163 was higher in D+Comps (n = 59) compared to D-comps (n = 42) in those with microvascular complications (n = 56; 1.3-fold), including a 1.4-fold increase in chronic kidney disease (CKD) (n = 42). sCD163 correlated positively with HbA1c and urinary albumin-creatinine ratio and negatively with HDL-c in D+Comps. sCD163 was increased 1.7-fold in those with advanced NASH fibrosis (LSM ≥ 10.3 kPa, n = 19) compared to those without (LSM < 10.3 kPa, n = 80). The AUC-ROC-curve was 0.64 for sCD163 to detect CKD and 0.74 to detect advanced NASH fibrosis. CONCLUSIONS: In this study, the elevated circulating sCD163 occurred in people with diabetes who had microvascular complications or advanced NASH fibrosis, suggesting sCD163 may have clinical utility as a biomarker in certain diabetes complications and disease severity in NAFLD.