bluuebunny/crossref_metadata_2025_split huggingface dataset:
Examining the effectiveness, feasibility, and acceptability of an advocacy program for Latinx families of transition-aged autistic youth
Authors: Aleman-Tovar Janeth , Burke Meghan M , Monárrez Edwin , Zaldivar Nicole Espinosa 
Published: November 2024

Families of autistic youth often support their children’s transition from adolescence to adulthood. During this time, families learn to navigate the complex shift from school-based to adult disability services. For Latinx (vs non-Latinx White) families of autistic youth, transition is especially difficult because of the systemic barriers (e.g. language) Latinx families face when accessing services. Unfortunately, few interventions aim to improve the transition among Latinx families of autistic transition-aged youth. This study examines the effectiveness, feasibility, and acceptability of the ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services) program, a six-session program for Latinx families of autistic youth, with respect to increasing: school-based transition planning and adult disability services knowledge, empowerment, and advocacy. Twenty-nine participants were included in this single-group, intervention study. After completing the program, participants demonstrated significantly improved: knowledge of school-based transition planning and adult disability services, advocacy, and empowerment. In addition, participants were highly satisfied with the program, based on the formative and summative evaluations and individual interviews. Implications for research and practice are discussed. Lay abstract To support Latinx families of autistic youth navigate school-based transition services and adult disability services, we provided a family advocacy program entitled, ASISTIR (Apoyando a nueStros hIjo/as con autiSmo obTener servIcios de tRansición; Supporting our Children with Autism to Obtain Transition Services). The ASISTIR program consisted of six, two-hour sessions and included the following topics: school-based transition planning, person-centered planning, Supplemental Security Income, Vocational Rehabilitation, and Home and Community-Based Medicaid Waiver. Twenty-nine Latinx family members completed the cohort-based ASISTIR program. After participating family members demonstrated increased knowledge of school-based transition planning and adult disability services. Participants also demonstrated increased empowerment and advocacy.
The impact of health maintenance organizations on improving cardiac surgery outcomes
Authors: Skidmore Kimberly L. , Flattmann Farrah E. , Cagle Hayden , Shekoohi Sahar , Kaye Alan D. 
Published: November 2024

Background and objectives: California is one of a few states with mandatory reporting of mortality after coronary artery bypass graft (CABG) surgery. The Affordable Care Act restructured Medicaid, preferentially penalizing patients experiencing poverty because payments to hospitals for isolated surgical events overshadow payments to primary care clinicians. We propose outcomes are superior when hospital networks organize surgical episodes within the context of primary care inside that same network. Design and methods: We listed factors impacting outcomes after CABG. CABG surgery outcome depends upon the integration of issues beginning years preoperatively and extending for decades. Therefore, we studied one health maintenance organization (HMO) from 2009 to 2020 compared to surrounding individual hospitals. We divided 58 hospitals in Northern California in 2009 according to income and population. To focus on changes introduced because of COVID-19, we compared a public database for the subset in 2009 for any relationship between poverty in a zip code and low volumes of CABG in that area to overall mortality in 2020. First, we defined low-income zip codes as those with a higher rate of poverty than the state average or with a lower per capita average income, per Census Bureau. Second, low volume was defined as a population under 165,000 because a hospital adjacent to a larger community can easily transfer care, sharing surgeons and processes. Third, we defined low volume as fewer than 180 CABG per year. Results: Our qualitative evidence synthesis reveals that informal communication and hospital HMO policies improve CABG outcomes. In our small pilot data, Chi-square analysis showed higher crude mortality rates in 1507 CABG in 17 low-income low-volume hospitals versus 8163 CABG in the other 41 Northern California hospitals (2.72% vs 1.69%, p = 0.0064). Low-income low-volume hospitals had a relative mortality risk of 1.61 (95% CI: 1.14–2.27). These hospitals had a mean mortality rate of 3.79%, readmission 11.12%, and stroke 1.84%. A patient undergoing CABG in a low-income low-volume hospital has a 61% higher chance of dying. The number needed to treat analysis shows that one life can potentially be saved for every 97 patients referred to another institution. Conclusion: We describe features of an HMO that contribute to up to fourfold lower mortality rates.
Aligning practitioner's perception: Empowering MAST framework for evaluating telemedicine services
Authors: Parvez Ayesha , Saleem Javeria , Bhatti Muhammad Ajmal , Hasan Arshad , Mahmood Asif , Ali Zulfiqar , Tauqeer Tauseef 
Published: November 2024

Objective Telemedicine is a digital substitute for in-person healthcare service delivery systems that has gained popularity amid the global COVID-19 pandemic. The objective of this study was to evaluate telemedicine compatibility from the perspective of healthcare practitioners to enhance the effectiveness and spectrum of the Model for Assessment of Telemedicine. Method Primary and Secondary Healthcare and King Edward Medical University extended their respective telemedicine services in 2020 where 24,516 patients were benefited from the telemedicine services provided by 1273 doctors from different specializations. A cross-sectional survey via online questionnaire was conducted among purposively sampled 248 healthcare practitioners designated at telemedicine portals in the public sector; further analysed by descriptive analysis and Monte Carlo Feature Selection. Results Healthcare practitioner perception was analysed explicitly and found significant in addition to the existing domains under multidisciplinary assessment in the Model for Assessment of Telemedicine model. The variables of subdomains integration with healthcare system, patient facilitation, technology ease, capacity building, ethical integrity, outcome assessment and communication gap under proposed healthcare practitioner perception domain were found interdependent. The variables of patient satisfaction, resource preservation, healthcare practitioner satisfaction, digital connectivity, user-friendliness, and patient safety were found to be of higher importance (RI values). However, the compatibility of telemedicine with the healthcare system was also influenced by interdependencies (RI plot) and multifaceted interactions of variables derived from the healthcare practitioner perception. Conclusion The variables of healthcare practitioner perception were exhibiting various weightages of importance and interdependencies in determining the compatibility of telemedicine within the healthcare system and recommended to be considered in the Model for Assessment of Telemedicine framework.
Participatory science and course-based undergraduate research experience to improve research-informed teaching of evolution and palaeontology
Authors: Lautenschlager Stephan 
Published: November 2024

AbstractThis study introduces a participatory science-inspired approach to teaching and curriculum design, involving undergraduate students directly in active research. Using a case study on dinosaur eye size, integrated into a first-year undergraduate course in Geology and Palaeontology at a UK university, this study presents the advantages and disadvantages of this approach for both teachers and learners. As part of the study, 22 undergraduate students were involved in data collection, analysis, and the subsequent publication processes, emphasizing active student participation in research. A subsequent survey demonstrated high student engagement and perceived relevance of this participatory science-style teaching approach. Results indicate that students found the approach appealing, engaging, and beneficial for understanding scientific concepts and methods. The case study shows that a participatory science approach through a course-based research experience can enhance student engagement and learning by providing meaningful, hands-on research experiences. This approach allowed students to apply theoretical knowledge in a realistic context, fostering their understanding of evolutionary theory through active data collection and analysis. However, care should be taken concerning data accuracy and ethical aspects, such as exploitation of labour and the recognition of knowledge creators and participants. Despite these challenges, the benefits of integrating such approaches into higher education curricula can be substantial, offering a valuable model for teaching evolutionary theory and related topics.
Adaption of a trigger tool to identify harmful incidents, no harm incidents, and near misses in prehospital emergency care of children
Authors: Packendorff Niclas , Magnusson Carl , Axelsson Christer , Hagiwara Magnus Andersson 
Published: November 2024

Abstract
Background
The emergency medical service (EMS) addresses all chief complaints across all ages in various contexts. Children in EMS present a particular challenge due to their unique anatomical and physical properties, which require specific training that EMS clinicians often report lacking. This combination exposes children to incidents threatening patient safety. The most common method to highlight incidents is the incident reporting system. Studies have shown underreporting of such incidents, highlighting the need for multiple methods to measure and enhance patient safety in EMS for children. Thus, the aim of this study was to modify and adapt the current Ambulance TT for road-based EMS (ATT) to a pediatric version (pATT) with a guide containing definitions of triggers.

Methods
The adaption of the ambulance trigger tool to a version suitable for children followed a stepwise manner, including (1) a review of previous literature to pinpoint areas of risk regarding patient safety among children in EMS. (2) Three sessions of expert panel discussions via video meetings were held to evaluate each trigger of the ATT in terms of clinical relevance, comprehensibility, language and areas of risk regarding patient safety among children in EMS. (3) Clinical use of the pATT along with Retrospective Record Review (RRR). (4) Calculation of Item-level validity index and positive predictive value (PPV) for each trigger. (5) calculate inter-rater reliability between two independent record reviewers.

Results
The literature search revealed 422 respective 561 articles in Cinahl and Medline where headlines and abstracts were read to identify areas posing risks to patient safety in EMS for children. During the structured discussions, one trigger was added to the existing 19 derived from the ATT, and the trigger definitions were modified to suit children. The three most common triggers identified in the 900 randomly selected records were deviation from treatment guidelines (63.9%), incomplete documentation (48.3%), and the patient is non conveyed after EMS assessment (41.1%). The positive triggers were categorized into near miss (54.6%), no harm incident (5.8%), and harmful incident (0.4%). Inter-rater reliability testing showed excellent agreement.

Conclusion
This study demonstrates the adaptation of an existing trigger tool (ATT) to one suitable for children. It also shows that the trigger tool, along with retrospective record review, is a feasible method to evaluate patient safety in EMS, thus complementing existing methods.
Burden of Parkinson’s disease in Central Asia from 1990 to 2021: findings from the Global Burden of Disease study
Authors: Akhmedullin Ruslan , Supiyev Adil , Kaiyrzhanov Rauan , Issanov Alpamys , Gaipov Abduzhappar , Sarria-Santamera Antonio , Tautanova Raushan , Crape Byron 
Published: November 2024

Abstract
Background
Central Asia is known to face various ecological challenges that constitutes major risk factors for Parkinson’s disease (PD). This study examines the burden of PD in Central Asia, a region where data on neurological disorders is notably sparse.

Methods
Building on the latest Global Burden of Disease Study (GBD 2021), this study investigates the Years of Life Lost (YLLs), Years Lived with Disability (YLDs), and Disability-Adjusted Life Years (DALYs) associated with PD in Central Asia and its countries from 1990 to 2021. The authors calculated average annual percent change (AAPC) to analyze trends, and compared individual country estimates to global figures. Additionally, incorporating data from the World Bank, both Bayesian hierarchical and non-hierarchical frequentist regression models were employed to assess their impact on DALYs.

Results
The DALYs varied across the study period, primarily driven by YLLs. While YLLs showed a uniform trend, YLDs were mostly incremental. Kazakhstan had the highest estimates across all metrics and was the only country aligned with global patterns. Age- and sex-specific estimates revealed substantial variations, with notably high figures found in male subjects from Tajikistan. The YLLs, YLDs, and DALYs for Kazakhstan, Uzbekistan, and Turkmenistan saw a significant increase in AAPCs. In contrast, Kyrgyzstan and Tajikistan saw declines, likely attributable to civic conflict and inter-country differences in population structure. Further comparison of DALY trends revealed significant deviations for all countries from the global pattern.

Conclusion
This study showed an overall increase in PD burden from 1990 to 2021. These findings underscore the need for targeted strategies to reduce PD burden, with a particular focus on Kazakhstan. Integrating historical information is crucial for discussing the plausible mechanisms in studies sourced from the GBD.
Homozygous splice-site variant in ENPP1 underlies generalized arterial calcification of infancy
Authors: Noor Ul Ayan Hafiza , Nitschke Yvonne , Mughal Abdul Razzaq , Thiele Holger , Malik Naveed Altaf , Hussain Ijaz , Haider Syed Muhammad Ijlal , Rutsch Frank , Erdmann Jeanette , Tariq Muhammad , Aherrahrou Zouhair , Ahmad Ilyas 
Published: November 2024

AbstractENPP1 (ectonucleotide pyrophosphatase/phosphodiesterase 1) plays a critical role by converting extracellular ATP to AMP, generating extracellular PPi, a potential inhibitor of calcification. Pathogenic variants in the ENPP1 cause generalized arterial calcification of infancy (GACI [OMIM 208000]). GACI, is an ultra-rare disease characterized by early-onset calcification of large and medium-sized arteries, leading to severe cardiovascular complications such as heart failure, pulmonary stenosis (PS), hypertension, and more. In this study, we report a novel homozygous splice-site pathogenic variant in ENPP1 (NM_006208, c.2230 + 5G > A; p.Asp701Asnfs*2) residing in C-terminal nuclease-like domain (NLD) of ENPP1 protein in a Pakistani family diagnosed with severe valvular PS and mild right ventricular hypertrophy (RVH). cDNA assays confirmed the skipping of exon 21, and the splice product underwent nonsense-mediated decay. Functional studies on fibroblasts from the patient demonstrated increased calcification and decreased enzymatic activity of ENPP1, recapitulating the hallmarks of GACI. By combining genetic analysis with the in vitro study, we substantiate that ENPP1:c.2230 + 5G > A variant is pathogenic, underscoring its role in the development of GACI.
Policy impact of the Imperial College COVID-19 Response Team: global perspective and United Kingdom case study
Authors: van Elsland Sabine L. , O’Hare Ryan M. , McCabe Ruth , Laydon Daniel J. , Ferguson Neil M. , Cori Anne , Christen Paula 
Published: November 2024

Abstract
Background
Mathematical models and advanced analytics play an important role in policy decision making and mobilizing action. The Imperial College Coronavirus Disease 2019 (COVID-19) Response Team (ICCRT) provided continuous, timely and robust epidemiological analyses to inform the policy responses of governments and public health agencies around the world. This study aims to quantify the policy impact of ICCRT outputs, and understand which evidence was considered policy-relevant during the COVID-19 pandemic.

Methods
We collated all outputs published by the ICCRT between 01-01-2020 and 24-02-2022 and conducted inductive thematic analysis. A systematic search of the Overton database identified policy document references, as an indicator of policy impact.

Results
We identified 620 outputs including preprints (16%), reports (29%), journal articles (37%) and news items (18%). More than half (56%) of all reports and preprints were subsequently peer-reviewed and published as a journal article after 202 days on average. Reports and preprints were crucial during the COVID-19 pandemic to the timely distribution of important research findings. One-fifth of ICCRT outputs (21%) were available to or considered by United Kingdom government meetings. Policy documents from 41 countries in 26 different languages referenced 43% of ICCRT outputs, with a mean time between publication and reference in the policy document of 256 days. We analysed a total of 1746 policy document references. Two-thirds (61%) of journal articles, 39% of preprints, 31% of reports and 16% of news items were referenced in one or more policy documents (these 217 outputs had a mean of 8 policy document references per output). The most frequent themes of the evidence produced by the ICCRT reflected the evidence-need for policy decision making, and evolved accordingly from the pre-vaccination phase [severity, healthcare demand and capacity, and non-pharmaceutical interventions (NPIs)] to the vaccination phase of the epidemic (variants and genomics).

Conclusion
The work produced by the ICCRT affected global and domestic policy during the COVID-19 pandemic. The focus of evidence produced by the ICCRT corresponded with changing policy needs over time. The policy impact from ICCRT news items highlights the effectiveness of this unique communication strategy in addition to traditional research outputs, ensuring research informs policy decisions more effectively.
Navigating SARS-CoV-2-related immunopathology in Crohn’s disease: from molecular mechanisms to therapeutic challenges
Authors: Chen Chang-Cyuan , Lin Yu-An , Liu Kuan-Ting , Huang Chun-Yao , Shih Chun-Ming , Lee Yuan-Ti , Pan Jun-Liang , Lee Ai-Wei 
Published: November 2024

AbstractSevere acute respiratory syndrome coronavirus 2 (SARS-CoV-2) not only posed major health and economic burdens to international societies but also threatens patients with comorbidities and underlying autoimmune disorders, including Crohn’s disease (CD) patients. As the vaccinated population is gradually relieved from the stress of the latest omicron variant of SARS-CoV-2 due to competent immune responses, the anxiety of CD patients, especially those on immunosuppressive treatment, has not subsided. Whether the use of immunosuppressants for remission of CD outweighs the potential risk of severe coronavirus disease 2019 (COVID-19) has long been discussed. Thus, for the best benefit of CD patients, our primary goal in this study was to navigate the clinical management of CD during the COVID pandemic. Herein, we summarized COVID-19 outcomes of CD patients treated with immunosuppressive agents from multiple cohort studies and also investigated possible mechanisms of how SARS-CoV-2 impacts the host immunity with special consideration of CD patients. We first looked into the SARS-CoV-2-related immunopathology, including lymphocytopenia, T-cell exhaustion, cytokine storms, and their possible molecular interactions, and then focused on mechanistic actions of gastrointestinal systems, including interruption of tryptophan absorption, development of dysbiosis, and consequent local and systemic inflammation. Given challenges in managing CD, we summarized up-to-date clinical and molecular evidence to help physicians adjust therapeutic strategies to achieve the best clinical outcomes for CD patients.
Validity and reliability of the osteoporotic fracture treatment score (OF score) and outcomes across various treatments in osteoporosis vertebral compression fracture patients
Authors: Mekariya Korawish , Santipas Borriwat , Khamnurak Harit , Sirichativapee Wilasinee , Korwutthikulrangsri Ekkapoj , Ruangchainikom Monchai , Sutipornpalangkul Werasak 
Published: November 2024

Abstract
Background
Osteoporotic vertebral compression fractures (OVF) are prevalent and substantially impact healthcare systems and patients’ quality of life. The osteoporotic fracture treatment score (OF score), developed by the German Society of Orthopedics and Trauma (DGOU), guides surgical decisions, but its reliability and validity are underexplored. This study assessed the OF score’s inter- and intraobserver reliability, validated its treatment recommendations, and investigated intermediate outcomes of different DGOU-recommended surgical strategies for OVF.

Methods
A retrospective cohort study was conducted. Inter- and intraobserver reliability of the OF score and its subcomponents were analyzed using clinical and radiographic data. Validity was assessed by comparing the OF score’s recommended treatments with actual treatments received. Outcomes at the final follow-up were back pain visual analog scale, Oswestry Disability Index, EQ-VAS, EQ-5D-5 L, adjacent fracture incidence, local kyphotic angle, and reoperation rates. Patients with at least 1-year follow-up were included.

Results
A total of 157 patients (84.7% female; mean age 74.2 ± 10.5 years) were evaluated. The most frequent osteoporotic fracture (OF) types were OF4 (49.0%) and OF3 (40.8%). The OF score demonstrated good interobserver reliability (ICC = 0.77, 95% CI: 0.65–0.86) and intraobserver reliability (ICC = 0.83, 95% CI: 0.72–0.90). Kappa values for subcomponents ranged from 0.57 to 0.89. Excluding patients with indeterminate recommendations (OF score = 6), 82.9% received treatments concordant with OF score recommendations. Receiver operating characteristic curve analysis showed an area under the curve of 0.77 (95% CI: 0.67–0.86); an OF score cutoff > 6.5 predicted actual treatment with 87.9% sensitivity and 61.0% specificity. All surgical treatments showed comparable improvements in clinical outcomes. However, patients treated with stand-alone cement augmentation (CA) had less local kyphotic angle correction (P = 0.004) and greater postoperative kyphotic progression (P < 0.001) than those undergoing short-segment (SS-PI) or long-segment instrumentation (LS-PI). No significant differences in adjacent fractures or complications were observed.

Conclusions
The OF score is a reliable and valid system with good discriminative ability for surgical decision-making in OVF patients. CA, SS-PI, and LS-PI are viable options with comparable functional outcomes. However, in OF3 or OF4 fractures, caution is advised due to lesser kyphosis correction and greater kyphotic progression with CA compared to SS-PI or LS-PI, as recommended by the DGOU.