Commentary: Determining Economic Factors That Matter to People With Intellectual and Developmental Disabilities and Their Caregivers: A Process Framework.

BACKGROUND: The 2020-2029 strategic plan for the Patient-Centered Outcomes Research Trust Fund calls for addressing data infrastructure gaps that are critical for studying issues around intellectual and developmental disabilities (I/DD). Specifically, the plan calls for data collection on economic factors that affect person-centered approaches to health care decision-making. Among people with I/DD and their caregivers, such economic factors may include financial costs of care, decreased opportunities for leisure and recreation, income losses associated with caregiving, and foregone opportunities for skill acquisition or other human capital investments. OBJECTIVE: This commentary supports responsiveness to the Patient-Centered OutcomesResearch Trust Fund (PCORTF) calls by conceptualizing and operationalizing a framework for identifying preferences on economic factors that are relevant to people with I/DD and their caregivers. MAIN ARGUMENTS: The framework outlined in this commentary addresses barriers to data collection that hinder measure development in the study of I/DD. This work is significant and timely given the continued movement to integrate and maintain people with I/DD within communities and recent methodological advances for eliciting preferences among people with I/DD. RELEVANCE TO THE SPECIAL ISSUE: Readers will be introduced to a framework for building data capacity in the study of economic outcomes among a population that is a high research priority for federal funding agencies. This commentary aims to be useful to researchers in planning, developing, and initiating projects in this area.

Increasing Participation and Access to Economic Associations and Their Services.

Discussions about increasing diversity in economics have ignored the role that associations play in the engagement of underrepresented economists. We continue work on diversity and inclusion in the Northeastern Agriculture and Resource Economics Association (NAREA) and other associations by analyzing membership and meeting attendance to promote diversity in economics. We estimate a vector error correction model (VECM) to identify the determinants of membership and meeting attendance and use member survey data to model membership and meeting attendance behavior. We find inequalities across gender, income, and professional status. Recommendations include locating meetings in accessible cities, increasing networking opportunities, and providing more services supporting underrepresented groups.

Re-evaluating the health of coral reef communities: baselines and evidence for human impacts across the central Pacific.

Numerous studies have documented declines in the abundance of reef-building corals over the last several decades and in some but not all cases, phase shifts to dominance by macroalgae have occurred. These assessments, however, often ignore the remainder of the benthos and thus provide limited information on the present-day structure and function of coral reef communities. Here, using an unprecedentedly large dataset collected within the last 10 years across 56 islands spanning five archipelagos in the central Pacific, we examine how benthic reef communities differ in the presence and absence of human populations. Using islands as replicates, we examine whether benthic community structure is associated with human habitation within and among archipelagos and across latitude. While there was no evidence for coral to macroalgal phase shifts across our dataset we did find that the majority of reefs on inhabited islands were dominated by fleshy non-reef-building organisms (turf algae, fleshy macroalgae and non-calcifying invertebrates). By contrast, benthic communities from uninhabited islands were more variable but in general supported more calcifiers and active reef builders (stony corals and crustose coralline algae). Our results suggest that cumulative human impacts across the central Pacific may be causing a reduction in the abundance of reef builders resulting in island scale phase shifts to dominance by fleshy organisms.

Screening Options in Autism Telediagnosis: Examination of TAP, M-CHAT-R, and DCI Concordance and Predictive Value in a Telediagnostic Model.

Tele-assessment of autism in early childhood has increased. However, it is unclear how autism screening tools (M-CHAT-R, DCI) function as part of tele-assessment and relate to a commonly used tele-assessment instrument, the TAP. 361 families from a clinically referred sample of children (mean age: 27.63 months, sd = 4.86 months) completed the M-CHAT-R and DCI prior to a tele-assessment visit utilizing the TAP. Data was collected on demographic background, measure scores, and diagnostic outcome. No significant differences in measure scores or diagnostic findings emerged in age at referral, age group, age at diagnosis, or child sex, ethnicity, or racial background. The M-CHAT-R and DCI correlated strongly and positively. Older age was associated with lower risk scores on screening instruments. Children with autism had significantly higher scores on all screener and subdomain scores, with the exception of DCI Behavior. Subdomains of the DCI emerged as the strongest predictor of diagnostic outcome. Both the DCI total score and the M-CHAT-R significantly related to diagnostic outcome and TAP score in this tele-assessment model, regardless of child age or sex. Findings also support use of the DCI for children under 24 months of age.

Radiation therapy for ventricular arrhythmias.

Ventricular arrhythmias (VA) can be life-threatening arrhythmias that result in significant morbidity and mortality. Catheter ablation (CA) is an invasive treatment modality that can be effective in the treatment of VA where medications fail. Recurrence occurs commonly following CA due to an inability to deliver lesions of adequate depth to cauterise the electrical circuits that drive VA or reach areas of scar responsible for VA. Stereotactic body radiotherapy is a non-invasive treatment modality that allows volumetric delivery of energy to treat circuits that cannot be reached by CA. It overcomes the weaknesses of CA and has been successfully utilised in small clinical trials to treat refractory VA. This article summarises the current evidence for this novel treatment modality and the steps that will be required to bring it to the forefront of VA treatment.

Agreement of parent-reported cognitive level with standardized measures among children with autism spectrum disorder.

Assessing cognitive development is critical in clinical research of autism spectrum disorder (ASD). However, collecting cognitive data from clinically administered assessments can add a significant burden to clinical research in ASD due to the substantial cost and time required, and it is often prohibitive in large-scale studies. There is a need for more efficient, but reliable, methods to estimate cognitive functioning for researchers, clinicians, and families. To examine the degree to which caregiver estimates of cognitive level agree with actual measured intelligence/developmental scores and understand factors that may impact that agreement, 1,555 autistic individuals (81.74% male; age 18 months-18 years) were selected from a large cohort (Simons Foundation Powering Autism Research for Knowledge, SPARK). Results suggest that querying parents about recent testing results and developmental diagnoses can provide valid and useful information on cognitive ability. The agreement of parental estimates varied with age, measured cognitive ability, autistic traits, and adaptive skills. In the context of large-scale research efforts, parent-reported cognitive impairment may be a good proxy for categorical IQ range for survey-based studies when specific IQ scores are not available, circumventing the logistical and financial obstacles of obtaining neuropsychological or neurodevelopmental testing.

The impact of radiation therapist-led structured peer review meetings on compliance to Radiation Oncology Practice Standards.

INTRODUCTION: Regular tumour-specific peer review meetings (TPRMs) were established by our group during 2016. A dedicated Quality Assurance Radiation Therapist (QART) was employed in 2018 to co-ordinate the meetings and for each patient, complete the Peer Review Audit Tool (PRAT) of the Royal Australian and New Zealand College of Radiologists (RANZCR). The aim of the current quality assurance study was to investigate the impact of the TPRMs and appointment of the QART on compliance to relevant RANZCR Radiation Oncology Practice Standards (ROPS). METHODS: Tumour-specific peer review meetings for eight tumour sites were assessed across our group's three hospitals from January 2017 to December 2019. Data from meetings were collected using the PRAT or from paper-based minutes and assessed against four ROPS (ROPS 3, 4, 8 and 9). Compliance with each of the four standards was measured by presence of the required documentation and presentation at TPRM, as recorded by the PRAT. RESULTS: There was an increase in the overall number of peer review cases audited from 173 in the 2017 calendar year to 469 in 2018 and 619 in 2019, representing 7%, 18% and 22% of all treatment courses started during these years, respectively. Staging was the most incompletely documented item across all years for audited patients. The request for radiation treatment plan modifications increased year-on-year: modifications were requested for 5% of plans in 2017 (8/172), 18% in 2018 (81/452) and 19% (119/619) in 2019. CONCLUSION: This study has shown that an increase in the number of cases for peer-review audit corresponded to the QART-facilitated TPRMs. Application of the PRAT has identified radiation treatment plan modifications that would otherwise go undetected and without opportunity to improve the quality of patients' treatment or avoid harm.

A pragmatic preference trial of therapeutic yoga as an adjunct to group cognitive behaviour therapy versus group CBT alone for depression and anxiety.

BACKGROUND: Yoga has several mechanisms that make it a promising treatment for depression and anxiety, including physical activity, behavioural activation, and mindfulness. Following positive outcomes from adapted CBT interventions incorporating mindfulness-based practices, this study explored the effects of a therapeutic yoga program as an adjunct to group-based CBT for depression or anxiety. METHODS: This was a pragmatic preference trial involving adults diagnosed with depression or anxiety in a regional primary mental healthcare service (n = 59), comparing transdiagnostic group CBT (n = 27) with transdiagnostic group CBT combined with an adjunct therapeutic yoga program (n = 32). A preference recruitment design allowed eligible participants (n = 35) to self-select into the adjunct program. The Depression Anxiety Stress Scale-21 (DASS) was assessed at baseline, post-intervention, and three-months follow up. RESULTS: CBT + Yoga was an acceptable alternative to CBT alone. Significant reductions were observed in total DASS scores and the 3 subscales of the DASS for both groups, however CBT + Yoga showed significantly lower depressive and anxiety symptoms post-intervention, compared to CBT alone. CBT + Yoga also showed sustained reductions in depressive symptoms over three-months, and more rapid reductions in depressive symptoms, compared to CBT alone. LIMITATIONS: These findings should be considered preliminary due to the moderate sample size, with a rigorous randomised control trial necessary to definitively support the integration of yoga within mental health care to augment the benefits and uptake of transdiagnostic CBT for depression and anxiety. CONCLUSIONS: Complementing other mindfulness-based practices, therapeutic yoga shows promise as an adjunct to transdiagnostic CBT.

A Review of Best Practices Related to Intravenous Line Management for Nurses.

The insertion, use, and maintenance of peripheral and central intravenous lines are skills used by nurses in a variety of health care and hospital settings. However, patient vascular access is not without potential complications that can result in patient harm. The aim of this review is to identify and summarize nursing research standards of care, and best practices for safe management and prevention of catheter-associated bloodstream infections related to peripheral intravascular (PIV) and central intravenous (CVC) line placement. The authors focused on concepts of site selection, skin preparation and insertion, securement, and maintenance and removal criteria for PIV and CVC.

Radiation therapist-led telephone follow-up: identifying patients who require post-treatment care.

INTRODUCTION: Radiation therapists implemented telephone follow-up (TFU) in 2015 as an additional point of care post-treatment. The purpose of this study was to determine whether TFU identified patients who required additional post-treatment care before the next scheduled review. METHODS: Between January 2015 and July 2016, all patients who were prescribed curative intent treatment aged 18 years or over were called 10 days post-radiation therapy (RT). Eight questions were developed and included asking patients how they were coping, if their side effects were improving, if they needed to contact the hospital and if more dressings were required. Patients who could not be contacted after two attempts were excluded from the study. Microsoft Excel and Statistical Package for Social Sciences (SPSS) were used to analyse the responses. RESULTS: Data were collected from 850 patients. A total of 28/846 (3%) of patients reported they were not coping after RT, with 26/830 (3%) reporting their side effects were getting worse. A total of 97/826 (12%) of patients felt they needed to contact the hospital because they were unwell. This study identified 104/677 (15%) of patients who responded required more dressings, with 67/104 (65.7%) and 10/104 (9.8%) of this cohort identified in the breast, and head and neck groups, respectively. CONCLUSION: Radiation therapist-led TFU has shown to be beneficial in identifying a small cohort of breast and head and neck cancer patients who required additional care post-radiation treatment.

Exploring the Experiences of Families of Latino Children Newly Diagnosed With Autism Spectrum Disorder.

OBJECTIVE: Understanding families' experiences from their initial developmental concerns through the first several months after autism spectrum disorder (ASD) diagnosis might help explain persistent disparities in age of diagnosis for low-income Latino children and those whose parents speak a primary language other than English. We explored these experiences among Latino parents of children recently diagnosed with ASD to develop a richer understanding of this critical juncture. METHOD: We conducted semistructured interviews with Latino parents of children diagnosed with ASD in the previous 3 months who were receiving follow-up care through a large, hospital-based outpatient practice. Interviews were recorded, transcribed verbatim, translated, and analyzed using an iterative process. RESULTS: Twenty parents participated in a semistructured interview approximately 3 months after their child was diagnosed with ASD. All respondents were female and Latina, 90% spoke Spanish, and 95% of children received Medicaid. We identified the following 3 themes from their experiences: (1) When parents first shared their concerns about their child's development with professionals, they felt unheard. (2) Parents were surprised that the diagnostic process for ASD relied on parental description of child development and behavior and observation of the child, not on medical tests. (3) Receiving an ASD diagnosis was a life-altering event for parents, and how that diagnosis was communicated by clinicians had a significant impact on families. CONCLUSION: Parents of young Latino children identified several barriers throughout the process of ASD identification and diagnosis that have important implications for improving clinician communication with families.

Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home.

LAY ABSTRACT: As adolescents become adults, they typically change from seeing a pediatric health care provider to seeing a health care provider who specializes in working with adults. Adolescents with autism spectrum disorder may have more difficulty finding an adult health care provider who is trained to address the varied needs and medical and mental health issues that often are seen with autism spectrum disorder. Without careful planning for transition to adult health care, patients may continue to be seen by pediatric providers who may not be familiar with adult health needs. This quality improvement project focused on improving transition to adult health care by creating varied supports for the patient, family, and the health care team and putting them into action within a pediatric medical practice that serves over 250 adolescent and young adult patients with autism spectrum disorder. Before the supports were put into place, patients and families received limited and inconsistent communication to help them with transition. While the supports helped increase the amount and quality of help patients and families received, medical providers skipped or put off transition discussion in approximately half of well visits for targeted patients. Challenges in implementing the transition process included finding time to discuss transition-related issues with patients/families, preference of medical providers to have social workers discuss transition, and difficulty identifying adult health care providers for patients. This suggests more work is needed to both train and partner with patients, families, and health staff to promote smooth and positive health transitions.

Validation of the Developmental Check-In Tool for Low-Literacy Autism Screening.

BACKGROUND: Persistent disparities exist in early identification of autism spectrum disorder (ASD) among children from low-income families who are racial and/or ethnic minorities and where English is not the primary language. Parental literacy and level of maternal education may contribute to disparities. The Developmental Check-In (DCI) is a visually based ASD screening tool created to reduce literacy demands and to be easily administered and scored across settings. In a previous study, the DCI showed acceptable discriminative ability between ASD versus non-ASD in a young, underserved sample at high-risk for ASD. In this study, we tested the DCI among an unselected, general sample of young underserved children. METHODS: Six hundred twenty-four children ages 24 to 60 months were recruited through Head Start and Early Head Start. Parents completed the DCI, Modified Checklist for Autism in Toddlers, Revised with Follow-Up, and Social Communication Questionnaire. Children scoring positive on any measure received evaluation for ASD. Those screening negative on both Modified Checklist for Autism in Toddlers, Revised with Follow-Up and Social Communication Questionnaire were considered non-ASD. RESULTS: Parents were primarily Hispanic, reported high school education or less, and had public or no insurance. The DCI demonstrated good discriminative power (area under the curve = 0.80), performing well across all age groups, genders, levels of maternal education, primary language, and included ethnic and racial groups. Item-level analyses indicated that 24 of 26 DCI items discriminated ASD from non-ASD. CONCLUSIONS: The DCI is a promising ASD screening tool for young, underserved children and may be of particular value in screening for ASD for those with low literacy levels or with limited English proficiency.

Yoga, cognitive-behavioural therapy versus education to improve quality of life and reduce healthcare costs in people with endometriosis: a randomised controlled trial.

INTRODUCTION: Endometriosis is a debilitating chronic inflammatory condition highly burdensome to the healthcare system. The present trial will establish the efficacy of (1) yoga and (2) cognitive-behavioural therapy (CBT), above (3) education, on quality of life, biopsychosocial outcomes and cost-effectiveness. METHODS AND ANALYSIS: This study is a parallel randomised controlled trial. Participants will be randomly allocated to yoga, CBT or education. Participants will be English-speaking adults, have a diagnosis of endometriosis by a qualified physician, with pain for at least 6 months, and access to internet. Participants will attend 8 weekly group CBT sessions of 120 min; or 8 weekly group yoga sessions of 60 min; or receive weekly educational handouts on endometriosis. The primary outcome measure is quality of life. The analysis will include mixed-effects analysis of variance and linear models, cost-utility analysis from a societal and health system perspective and qualitative thematic analysis. ETHICS AND DISSEMINATION: Enrolment in the study is voluntary and participants can withdraw at any time. Participants will be given the option to discuss the study with their next of kin/treating physician. Findings will be disseminated via publications, conferences and briefs to professional organisations. The University's media team will also be used to further disseminate via lay person articles and media releases. TRIAL REGISTRATION NUMBER: ACTRN12620000756921p; Pre-results.

Who Reports Low Interactive Psychology Status? An Investigation Based on Chinese Coal Miners.

In mine safety and health research, psychological issues have always been neglected. This paper aims to identify the psychological perceptions of workers with respect to the mine environment and interpersonal environment across the whole production system. A survey was designed that measured the miners' demographic details and perceptions of two affect-based interactions; three resource-based interactions for the manager, supervisor, co-worker; and three actual environment interactions. A total of 642 frontline coal miners from six mines located in six provinces in China completed the survey. The main results indicated that that miners reported low psychology status, especially those over 51 years old, with a monthly income of 2000-4000 and junior school education. Second, there was a high proportion of inferior value in environmental interactions. Meanwhile, the miners' interactions with their co-workers were perceived as the most positive and those with their managers as the least in interpersonal interactions. Third, there were significant differences in sub-dimension interactions (actual environment, resource-based, affect-based interactions) that certainly existed in these interactive roles. Additionally, the dissociated type of miners with manager and supervisor (low resource and affect-based interaction) reached 23.99~24.45%. This study revealed the inner psychological risk factors for safety and health work in coal mines and provides an essential guideline for mining industries.

Parental Concerns of Underserved Young Children at Risk for Autism.

Early identification of children at risk for autism spectrum disorder (ASD) is critical to promote optimal outcomes. However disparities in early recognition of ASD based on race, ethnicity, income, and English proficiency persist. Little is known regarding how parents from these groups describe concerns. The study aim was to understand how parents of children from underserved backgrounds at developmental risk describe concerns about child development and behavior. To address this gap, developmental concerns of 204 parents of children at-risk for ASD from underserved communities were analyzed. In this sample, the number and type of parental concerns differed based on parent primary language but not the presence of ASD or ethnicity. Parents whose primary language was Spanish were less likely to express concerns about their child's development or to express ASD-specific concerns. These findings have implications for how clinicians elicit and interpret developmental concerns from underserved families.

The Developmental Check-In: Development and initial testing of an autism screening tool targeting young children from underserved communities.

Children with autism spectrum disorder from low-income, minority families or those with limited English proficiency are diagnosed at a later age, or not at all, compared with their more advantaged peers. The Developmental Check-In is a new tool that could potentially be used to screen for autism that uses pictures to illustrate target behaviors. It was developed to enhance early identification of autism spectrum disorder in low literacy groups. The Developmental Check-In was tested in a sample of 376 children between the ages of 24 and 60 months, from underserved communities. It showed good ability to discriminate autism spectrum disorder from non-autism spectrum disorder (area-under-the-curve = 0.75) across the full age range represented in the sample. Twenty-six of the 28 Developmental Check-In items predicted the presence of autism spectrum disorder. Findings suggest that this pictorial tool may reduce linguistic and health literacy demands when screening for autism among vulnerable populations.

De novo and inherited TCF20 pathogenic variants are associated with intellectual disability, dysmorphic features, hypotonia, and neurological impairments with similarities to Smith-Magenis syndrome.

BACKGROUND: Neurodevelopmental disorders are genetically and phenotypically heterogeneous encompassing developmental delay (DD), intellectual disability (ID), autism spectrum disorders (ASDs), structural brain abnormalities, and neurological manifestations with variants in a large number of genes (hundreds) associated. To date, a few de novo mutations potentially disrupting TCF20 function in patients with ID, ASD, and hypotonia have been reported. TCF20 encodes a transcriptional co-regulator structurally related to RAI1, the dosage-sensitive gene responsible for Smith-Magenis syndrome (deletion/haploinsufficiency) and Potocki-Lupski syndrome (duplication/triplosensitivity). METHODS: Genome-wide analyses by exome sequencing (ES) and chromosomal microarray analysis (CMA) identified individuals with heterozygous, likely damaging, loss-of-function alleles in TCF20. We implemented further molecular and clinical analyses to determine the inheritance of the pathogenic variant alleles and studied the spectrum of phenotypes. RESULTS: We report 25 unique inactivating single nucleotide variants/indels (1 missense, 1 canonical splice-site variant, 18 frameshift, and 5 nonsense) and 4 deletions of TCF20. The pathogenic variants were detected in 32 patients and 4 affected parents from 31 unrelated families. Among cases with available parental samples, the variants were de novo in 20 instances and inherited from 4 symptomatic parents in 5, including in one set of monozygotic twins. Two pathogenic loss-of-function variants were recurrent in unrelated families. Patients presented with a phenotype characterized by developmental delay, intellectual disability, hypotonia, variable dysmorphic features, movement disorders, and sleep disturbances. CONCLUSIONS: TCF20 pathogenic variants are associated with a novel syndrome manifesting clinical characteristics similar to those observed in Smith-Magenis syndrome. Together with previously described cases, the clinical entity of TCF20-associated neurodevelopmental disorders (TAND) emerges from a genotype-driven perspective.

Correction to: De novo and inherited TCF20 pathogenic variants are associated with intellectual disability, dysmorphic features, hypotonia, and neurological impairments with similarities to Smith-Magenis syndrome.

It was highlighted that the original article [1] contained a typographical error in the Results section. Subject 17 was incorrectly cited as Subject 1. This Correction article shows the revised statement. The original article has been updated.

Real-time PCR approach for detection of environmental sources of Campylobacter strains colonizing broiler flocks.

Reducing colonization of poultry flocks by Campylobacter spp. is a key strategy in the control and prevention human campylobacteriosis. Horizontal transmission of campylobacters, from in and around the farm, is the presumed route of flock colonization. However, the identification and prioritization of sources are confounded by the ubiquitous nature of these organisms in the environment, their poor rates of recovery by standard culture methods, and the need for cost-effective and timely methods for strain-specific comparison. A real-time PCR screening test for the strain-specific detection of campylobacters in environmental samples has been developed to address this issue. To enable this approach, fluorescently labeled PCR oligonucleotide probes suitable for a LightCycler-based assay were designed to match a highly variable DNA segment within the flaA short variable region (SVR) of Campylobacter jejuni or C. coli. The capacity of such probes to provide strain-specific tools was investigated by using bacterial cultures and spiked and naturally contaminated poultry fecal and environmental samples. The sensitivity of two representative probes was estimated, by using two different C. jejuni strains, to be 1.3 x 10(2) to 3.7 x 10(2) CFU/ml in bacterial cultures and 6.6 x 10(2) CFU/ml in spiked fecal samples. The specificity of the SVR for C. jejuni and C. coli was confirmed by using a panel of strains comprising other Campylobacter species and naturally contaminated samples. The approach was field tested by sampling the environment and feces of chickens of two adjacently located poultry houses on a conventional broiler farm throughout the life of one flock. All environmental samples were enriched for 2 days, and then DNA was prepared and stored. Where feasible, campylobacter isolates were also recovered and stored for subsequent testing. A strain-specific probe based on the SVR of the strain isolated from the first positive chicken fecal sample was developed. This probe was then used to screen the stored environmental samples by real-time PCR. Pulsed-field gel electrophoresis was used to compare recovered environmental and fecal isolates to assess the specificity of the method. The results established the proof of principle that strain-specific probes, based on the SVR of flaA, can identify a flock-colonizing strain in DNA preparations from enriched environmental cultures. Such a novel strategy provides the opportunity to investigate the epidemiology of campylobacters in poultry flocks and allows targeted biosecurity interventions to be developed. The strategy may also have wider applications for the tracking of specific campylobacter strains in heavily contaminated environments.