bluuebunny/crossref_metadata_2025_split huggingface dataset:
A scoping review of health literacy in rare disorders: key issues and research directions
Authors: Stenberg Una , Westfal Lydia , Dybesland Rosenberger Andreas , Ørstavik Kristin , Flink Maria , Holmen Heidi , Systad Silje , Westermann Karl Fredrik , Velvin Gry 
Published: September 2024

Abstract
Background
The ability to find, understand, appraise and utilise health information is crucial among individuals living with rare disorders. The aim of this study was to give a comprehensive overview of the literature on health literacy in adult persons with rare disorders.

Methods
We applied a scoping review methodology and performed a systematic search in 2021 in bibliographic databases. Searches were conducted in Medline (Ovid), Embase (Ovid), PsycInfo (Ovid), CINAHL (ebsco), and ERIC (Ovid). References were sorted and evaluated for inclusion using EndNote and Covidence. This review was guided by the question “What are the characteristics of research on health literacy in rare disorders?”

Results
The database searches yielded 75 eligible reports. A total of 6223 individuals with rare disorders were represented alongside 1707 caregivers. The reports in this review have included study participants representing a total of 80 different rare disorders with unique ORPHA and ICD-10 codes. The results revealed that persons with rare disorders often exhibit gaps in health literacy through a lack of knowledge and access to information related to self-management, their own diagnosis and health, as well as daily coping and social rights. In addition, the importance of aid and information from healthcare personnel and the significance of getting social support from others in the same situation were accentuated.

Conclusion
This review emphasizes the importance of reinforcing health literacy among persons with rare disorders through peer support and education. This is the first review to give a comprehensive and state-of-the-art overview of literature investigating health literacy among persons with rare disorders and offers a basis for further research.
Health service utilization, economic burden and quality of life of patients with mucopolysaccharidosis in China
Authors: Kang Qi , Fang Yuhang , Yang Yan , Li Dingguo , Zheng Lin , Chen Xinyi , Tu Xiaowen , Jin Chunlin 
Published: September 2024

AbstractBackgroundPatients with mucopolysaccharidosis (MPS) often face delayed diagnoses, limited treatment options and high healthcare costs, that may significantly affect patients' quality of life. The objective of this study was to understand medical service utilization related to diagnosis and treatment, economic burden during diagnosis period, and health-related quality of life among MPS patients in China.MethodsA series of patients diagnosed with MPS registered in the national patient organization were recruited for a cross-sectional survey from May to July 2019. Information were collected from patients or their parents via phone interview, including demographic data, utilization of services related to diagnosis and treatment, total cost during the period of MPS diagnosis and health-related quality of life (HRQoL). HRQoL was assessed by PedsQL 4.0 Generic Core Scale (PedsQL) and 36-item short-form health survey (SF-36) depending on the age of patients with MPS and compared with the general Chinese population.ResultsA total of 180 MPS patients (50, 67, 15, 46, 1 and 1 for type I, II, III, IV, VI and VII), with a mean age of 9.54 years and 137 (76.11%) males, were included in analysis. The mean age at first visit to a medical doctor for MPS related symptoms was 3.65 ± 2.58 years old, while only 12 patients (6.67%) were diagnosed on their first visit. The mean diagnostic delay, which is defined as the time between the first visit to a medical doctor for MPS related symptoms and the final diagnosis, was 9.42 months, with no significant difference between types. The average number of misdiagnosis was 4.56. Before the confirmed diagnosis, the patients made an average of 6.31 visits and visited 4.3 hospitals. During diagnosis period, the mean of ¥81,086.72 direct medical costs accounted for 63.75% of the total cost. Only 32.78% of the patients had ever received specific treatments. The mean scores of PedsQL and SF-36 of patients were significantly lower than the Chinese norms. Household annual income per person, specific treatment use and MPS subtype were significantly associated HRQoL of patients.ConclusionThe results highlight challenges faced by MPS patients in terms of diagnosis, access to specific treatments, economic burden and low HRQoL. There is an urgent need to improve early detection and diagnosis, create fair and consistent mechanisms to increase access to specialized treatment and reduce the economic burden of MPS patients in China.
CSF neurogranin levels as a biomarker in Alzheimer’s disease and frontotemporal lobar degeneration: a cross-sectional analysis
Authors: Jurasova Vanesa , Andel Ross , Katonova Alzbeta , Veverova Katerina , Zuntychova Terezie , Horakova Hana , Vyhnalek Martin , Kolarova Tereza , Matoska Vaclav , Blennow Kaj , Hort Jakub 
Published: September 2024

Abstract
Background
There is initial evidence suggesting that biomarker neurogranin (Ng) may distinguish Alzheimer’s disease (AD) from other neurodegenerative diseases. Therefore, we assessed (a) the discriminant ability of cerebrospinal fluid (CSF) Ng levels to distinguish between AD and frontotemporal lobar degeneration (FTLD) pathology and between different stages within the same disease, (b) the relationship between Ng levels and cognitive performance in both AD and FTLD pathology, and (c) whether CSF Ng levels vary by apolipoprotein E (APOE) polymorphism in the AD continuum.

Methods
Participants with subjective cognitive decline (SCD) (n = 33), amnestic mild cognitive impairment (aMCI) due to AD (n = 109), AD dementia (n = 67), MCI due to FTLD (n = 25), and FTLD dementia (n = 29) were recruited from the Czech Brain Aging Study. One-way analysis of covariance (ANCOVA) assessed Ng levels in diagnostic subgroups. Linear regressions evaluated the relationship between CSF Ng levels, memory scores, and APOE polymorphism.

Results
Ng levels were higher in aMCI-AD patients compared to MCI-FTLD (F[1, 134] = 15.16, p < .001), and in AD-dementia compared to FTLD-dementia (F[1, 96] = 4.60, p = .029). Additionally, Ng levels were higher in FTLD-dementia patients compared to MCI-FTLD (F[1, 54]= 4.35, p = .034), lower in SCD participants compared to aMCI-AD (F[1, 142] = 10.72, p = .001) and AD-dementia (F[1, 100] = 20.90, p < .001), and did not differ between SCD participants and MCI-FTLD (F[1, 58]= 1.02, p = .491) or FTLD-dementia (F[1, 62]= 2.27, p = .051). The main effect of diagnosis across the diagnostic subgroups on Aβ1−42/Ng ratio was significant too (F[4, 263]=, p < .001). We found a non-significant association between Ng levels and memory scores overall (β=-0.25, p = .154) or in AD diagnostic subgroups, and non-significant differences in this association between overall AD APOE ε4 carriers and non-carriers (β=-0.32, p = .358).

Conclusions
In this first study to-date to assess MCI and dementia due to AD or FTLD within one study, elevated CSF Ng appears to be an early biomarker of AD-related impairment, but its role as a biomarker appears to diminish after dementia diagnosis, whereby dementia-related underlying processes in AD and FTLD may begin to merge. The Aβ1−42/Ng ratio discriminated AD from FTLD patients better than Ng alone. CSF Ng levels were not related to memory in AD or FTLD, suggesting that Ng may be a marker of the biological signs of disease state rather than cognitive deficits.
The initiation and early development of apical–basal polarity in Toxoplasma gondii
Authors: Arias Padilla Luisa F. , Munera Lopez Jonathan , Shibata Aika , Murray John M. , Hu Ke 
Published: September 2024

ABSTRACT
The body plan of the human parasite Toxoplasma gondii has a well-defined polarity. The minus ends of the 22 cortical microtubules are anchored to the apical polar ring, which is a putative microtubule-organizing center. The basal complex caps and constricts the parasite posterior end and is crucial for cytokinesis. How this apical–basal polarity is initiated is unknown. Here, we have examined the development of the apical polar ring and the basal complex using expansion microscopy. We found that substructures in the apical polar ring have different sensitivities to perturbations. In addition, apical–basal differentiation is already established upon nucleation of the cortical microtubule array: arc forms of the apical polar ring and basal complex associate with opposite ends of the microtubules. As the nascent daughter framework grows towards the centrioles, the apical and basal arcs co-develop ahead of the microtubule array. Finally, two apical polar ring components, APR2 and KinesinA, act synergistically. The removal of individual proteins has a modest impact on the lytic cycle. However, the loss of both proteins results in abnormalities in the microtubule array and in highly reduced plaquing and invasion efficiency.
Fear of malignant fungating wounds
Authors: Eyres Jacqueline 
Published: September 2024

Background: The poor prognosis and clinical presentation of malignant fungating wounds (MFWs) can lead to service users experiencing various dimensions of fear. Aim: This article encourages district nurses (DNs) to explore the psychological factors associated with MFWs in the community setting. Method: The reviewed literature discusses DN practice, with supplementary sources utilised to provide a wider perspective on the multifaceted nature of the subject. Findings: Guidelines advocate that DNs should promptly initiate dialogue to address fears, establish trust and enable service users with MFWs to express concerns, thus facilitating a holistic provision of care. It is crucial to leverage the multidisciplinary team and engage with other agencies to provide support for service users. Effective leadership qualities play a vital role in initiating practice changes that ultimately benefit service users, while also considering clinical governance aspects.
UAV-Based High-Throughput Phenotyping to Segment Individual Apple Tree Row Based on Geometrical Features of Poles and Colored Point Cloud
Authors: Mao Wulan , Murengami Bryan , Jiang Hanhui , Li Rui , He Long , Fu Longsheng 
Published: September 2024

HighlightsIntegrating RGB values and 3D coordinates of fruit trees provided phenotype-related data.The use of point clouds projection in tree rows segmentation has been confirmed.Using geometric features increased the accuracy of removing poles in an orchard.Segmenting fruit trees after removing poles on a single tree row was more accurate than traditional segmentation method.UAV equipped with LiDAR and a camera is promising for orchard high-throughput phenotyping.Abstract. High-throughput phenotyping (HTP) of fruit trees is important for providing crop geometrical information to evaluate their high yield genotypes. Unmanned aerial vehicle (UAV) is suitable for HTP by obtaining remote sensing data of large modern apple orchards, where each tree row needs to be segmented before segmenting a single tree. This study aims to develop a method for segmenting each row without noise (ERWON) of apple trees based on integrating RGB values and three-dimensional coordinates by UAV. A robust, real-time, RGB-colored, and LiDAR-inertial-visual tightly-coupled state estimation network was used to form a dense map of the orchard, which provided datasets of colored point clouds. Supporting poles were removed from the point clouds based on the consistent number of half upper parts and lower parts. Random sampling and an effective local feature aggregator were trained to segment ERWON after pole segmentation. Results showed that a precision of 0.971, a recall of 0.984, and an intersection-over-union of 0.817 for ERWON segmentation were achieved. This method proposed a potential solution for addressing the challenge of accurately and efficiently segmenting ERWON in large orchards. It is expected to be helpful for obtaining general parameters, such as geometric, morphological, and textural characteristics, as well as more specific parameters relevant to a particular phenotyping task. Keywords: Apple trees, Detection, Point cloud, RGB-colored, Segmentation.
Interdigital waveguide grating antenna array for an optical phased array
Authors: Yuan Ye , Jiang Chenghao , Zhu Jingguo 
Published: September 2024

To address the issues of beam divergence, emission loss, and field of view (FOV) limitation for an optical phased array (OPA), we propose a novel, to our knowledge, interdigital waveguide grating antenna (WGA) array. This array comprises four WGAs with varying etching periods, where antennas with identical periods are interleaved to achieve bidirectional scanning fields. By selecting antennas with different periods, the entire array enables longitudinal wide-field stitching scanning. Furthermore, to enhance directivity, the WGAs in the array utilize a Si3N4-Si dual-layer structure, breaking the vertical symmetry of traditional antennas to reduce light leakage to the substrate. As a result, a high directivity of 97.4% is achieved, with a waveguide emission length at 21.37 mm, and a far-field longitudinal divergence angle of 0.0037°. Ultimately, we simulate the pointing performance of the entire interdigital array. The results demonstrate a longitudinal scanning range of up to 103.44° with a tuning precision of 1.03°/nm.
Backtracking: Improved methods for identifying the source of a deliberate release of Bacillus anthracis from the temporal and spatial distribution of cases
Authors: Shingleton Joseph , Mustard David , Dyke Steven , Williams Hannah , Bennett Emma , Finnie Thomas 
Published: September 2024

Reverse epidemiology is a mathematical modelling tool used to ascertain information about the source of a pathogen, given the spatial and temporal distribution of cases, hospitalisations and deaths. In the context of a deliberately released pathogen, such as Bacillus anthracis (the disease-causing organism of anthrax), this can allow responders to quickly identify the location and timing of the release, as well as other factors such as the strength of the release, and the realized wind speed and direction at release. These estimates can then be used to parameterise a predictive mechanistic model, allowing for estimation of the potential scale of the release, and to optimise the distribution of prophylaxis.
In this paper we present two novel approaches to reverse epidemiology, and demonstrate their utility in responding to a simulated deliberate release of B. anthracis in ten locations in the UK and compare these to the standard grid-search approach. The two methods—a modified MCMC and a Recurrent Convolutional Neural Network—are able to identify the source location and timing of the release with significantly better accuracy compared to the grid-search approach. Further, the neural network method is able to do inference on new data significantly quicker than either the grid-search or novel MCMC methods, allowing for rapid deployment in time-sensitive outbreaks.
Soil surveillance for monitoring soil-transmitted helminths: Method development and field testing in three countries
Authors: Manuel Malathi , Amato Heather K. , Pilotte Nils , Chieng Benard , Araka Sylvie B. , Siko Joël Edoux Eric , Harris Michael , Nadimpalli Maya L. , Janagaraj Venkateshprabhu , Houngbegnon Parfait , Rajendiran Rajeshkumar , Thamburaj Joel , Kaliappan Saravanakumar Puthupalayam , Sirois Allison R. , Walch Gretchen , Oswald William E. , Asbjornsdottir Kristjana H. , Galagan Sean R. , Walson Judd L. , Williams Steven A. , Luty Adrian J. F. , Njenga Sammy M. , Ibikounlé Moudachirou , Ajjampur Sitara S. R. , Pickering Amy J. 
Published: September 2024

Background
One-fifth of the global population is infected with soil-transmitted helminths (STH). Mass drug administration (MDA) with deworming medication is widely implemented to control morbidity associated with STH infections. However, surveillance of human infection prevalence by collecting individual stool samples is time-consuming, costly, often stigmatized, and logistically challenging. Current methods of STH detection are poorly sensitive, particularly in low-intensity and low-prevalence populations.

Methodology/Principal findings
We aimed to develop a sensitive and specific molecular method for detecting STH DNA in large volumes of soil (20 g) by conducting laboratory and proof of concept studies across field sites in Kenya, Benin, and India. We collected human stool (n = 669) and soil (n = 478) from 322 households across the three study sites. We developed protocols for DNA extraction from 20 g of soil and qPCR to detect Ascaris lumbricoides, Trichuris trichiura, Necator americanus, and Ancylostoma duodenale. Agreement between detection of STH via qPCR, digital droplet PCR (ddPCR), and microscopy-based methods was assessed using the Cohen’s Kappa statistic. Finally, we estimated associations between soil characteristics and detection of STH in soil by qPCR, as well as between STH detected in soil and STH detected in stool from matched households, adjusting for soil characteristics. The overall prevalence of STH in soil by qPCR was 31% for A. lumbricoides, 3% for T. trichiura, and 13% for any hookworm species. ddPCR and qPCR performed similarly. However, there was poor agreement between STH detected in soil by qPCR versus light microscopy. Microscopy underestimated the prevalence of A. lumbricoides and N. americanus and overestimated T. trichiura. Detection of an STH species in household soil was strongly associated with increased odds of a household member being infected with that same species.

Conclusions/Significance
Soil surveillance for STH has several benefits over stool-based surveillance, including lower cost and higher success rates for sample collection. Considering that delivery of MDA occurs at the community level, environmental surveillance using molecular methods could be a cost-effective alternate strategy for monitoring STH in these populations.
Reliability and validity of the Chinese version of the Benefit Finding Questionnaire for people with mental disorders
Authors: Cao Xinyu , Tian Xiaomeng , Wen Yan , Li Peijuan , Ge Ruyu , Li Xiaolin , Feng Mei 
Published: September 2024

Background
Benefit finding (BF) is correlated with mental health and recovery, and its presence will contribute to the recovery of patients with mental disorders. Most of the current tools for assessing BF in patients with somatic disorders are not adequate for patients with mental disorders. The present study proposes to introduce the Benefit Finding Questionnaire for People with Mental Disorders and to validate its psychometric properties.

Methods
The Beaton translation model was used to translate and cross-culturally adjust the Japanese version of the Benefit Finding Questionnaire for People with Mental Disorders. A survey of 514 people with mental disorders was conducted from January 2022 to October 2022 using a general information questionnaire and a translated Chinese version of the Benefit Finding Questionnaire for People with Mental Disorders (BFQ-C) using a convenience sampling method. The quality of the questionnaire was examined in terms of item analysis, reliability, and validity.

Results
The results of the item analysis showed that all items met the requirements. The interrater agreement of the BFQ-C was good, with an interrater agreement = 0.714; the values of the item-level content validity index ranged from 0.75 to 1.00; and the average of all item-level content validity index on the scale = 0.958. Exploratory factor analysis extracted three main factors “change in relationship with others,” “change in spirituality,” and “change in values and thinking styles”—and the cumulative variance contribution rate was 57.70%. The results of the confirmatory factor analysis were χ2/df of 2.194, Root Mean Square Error of Approximation of 0.075, and comparative fit index of 0.919, indicating that the model fitted well. The questionnaire had a Cronbach’ alpha of 0.936, a split reliability of 0.956, and a retest reliability of 0.939.

Conclusion
The BFQ-C demonstrated good reliability and validity, and can be used to assess the BF level of people with mental disorders (e.g., anxiety disorders, depressive disorders, schizophrenia, and bipolar disorders) in China.
Assessment of sociodemographic factors associated with time to self-reported COVID-19 infection among a large multi-center prospective cohort population in the southeastern United States
Authors: Beron Andrew J. , Yukich Joshua O. , Berry Andrea A. , Correa Adolfo , Keating Joseph , Bott Matthew , Wierzba Thomas F. , Weintraub William S. , Friedman-Klabanoff DeAnna J. , Mongraw-Chaffin Morgana , Gibbs Michael A. , Taylor Yhenneko J. , Kissinger Patricia J. , Hayes Devin V. , Schieffelin John S. , Burke Brian K. , Oberhelman Richard A. 
Published: September 2024

Objective
We aimed to investigate sociodemographic factors associated with self-reported COVID-19 infection.

Methods
The study population was a prospective multicenter cohort of adult volunteers recruited from healthcare systems located in the mid-Atlantic and southern United States. Between April 2020 and October 2021, participants completed daily online questionnaires about symptoms, exposures, and risk behaviors related to COVID-19, including self-reports of positive SARS CoV-2 detection tests and COVID-19 vaccination. Analysis of time from study enrollment to self-reported COVID-19 infection used a time-varying mixed effects Cox-proportional hazards framework.

Results
Overall, 1,603 of 27,214 study participants (5.9%) reported a positive COVID-19 test during the study period. The adjusted hazard ratio demonstrated lower risk for women, those with a graduate level degree, and smokers. A higher risk was observed for healthcare workers, those aged 18–34, those in rural areas, those from households where a member attends school or interacts with the public, and those who visited a health provider in the last year.

Conclusions
We identified subgroups within healthcare network populations defined by age, occupational exposure, and rural location reporting higher than average rates of COVID-19 infection for our surveillance population. These subgroups should be monitored closely in future epidemics of respiratory viral diseases.