bluuebunny/crossref_metadata_2025_split huggingface dataset:
Rural community‐centred co‐planning for sustainable rural health systems
Authors: Hyett Nerida , Hutchinson Mandy , Doyle Donna , Adem Trevor , Coghill Dallas , Harvey Pamela , Lees Catherine , O'Sullivan Belinda 
Published: July 2024

AbstractObjectiveSustaining rural healthcare services is challenging because of numerous systemic factors. Rural communities can inform the design of sustainable rural health models; however, further evidence of effective co‐design is needed to guide implementation. The study aim was to co‐design a series of place‐based and evidence‐informed rural health models, to improve local health system sustainability.SettingA rural region (categorised as Modified Monash Model 5) defined by three adjoining Shires in Central and Northwest Victoria, Australia.ParticipantsA health executive co‐planning network led the co‐design, with input and oversight from a broader cross‐sector group. Healthcare professionals (n = 44) and consumers and carers (n = 21) participated in interviews, and an online survey was completed by healthcare professionals (n = 11) and consumers and carers (n = 7) to provide feedback on the preliminary results.DesignCommunity‐based participatory action research was applied incorporating co‐design methods and systems thinking. Data were collected through qualitative interviews followed by an online feedback survey. Mixed method data analysis (QUAL‐quant) was conducted with qualitative directed content analysis of interview transcripts and quantitative descriptive analyses of survey responses to aid prioritisation.ResultsHealthcare priorities, strengths and challenges, and proposed rural health models are described. A rural health system sustainability strategy was developed with three integrated pillars: 1. Workforce strengthening, 2. Integrated health services and 3. Innovative models of care.ConclusionCommunity‐centred co‐design with rural health stakeholders was effective for generating locally tailored ideas and potential health models that emulate community strengths and resources, and provide a foundation for further planning, implementation and evaluation.
FAIR Enough: Develop and Assess a FAIR-Compliant Dataset for Large Language Model Training?
Authors: Raza Shaina , Ghuge Shardul , Ding Chen , Dolatabadi Elham , Pandya Deval 
Published: July 2024

ABSTRACT
The rapid evolution of Large Language Models (LLMs) highlights the necessity for ethical considerations and data integrity in AI development, particularly emphasizing the role of FAIR (Findable, Accessible, Interoperable, Reusable) data principles. While these principles are crucial for ethical data stewardship, their specific application in the context of LLM training data remains an under-explored area. This research gap is the focus of our study, which begins with an examination of existing literature to underline the importance of FAIR principles in managing data for LLM training. Building upon this, we propose a novel frame-work designed to integrate FAIR principles into the LLM development lifecycle. A contribution of our work is the development of a comprehensive checklist intended to guide researchers and developers in applying FAIR data principles consistently across the model development process. The utility and effectiveness of our frame-work are validated through a case study on creating a FAIR-compliant dataset aimed at detecting and mitigating biases in LLMs. We present this framework to the community as a tool to foster the creation of technologically advanced, ethically grounded, and socially responsible AI models.
Genome-wide analysis of histone modifications can contribute to the identification of candidate cis-regulatory regions in the threespine stickleback fish
Authors: Okude Genta , Yamasaki Yo Y. , Toyoda Atsushi , Mori Seiichi , Kitano Jun 
Published: July 2024

Abstract
Background
Cis-regulatory mutations often underlie phenotypic evolution. However, because identifying the locations of promoters and enhancers in non-coding regions is challenging, we have fewer examples of identified causative cis-regulatory mutations that underlie naturally occurring phenotypic variations than of causative amino acid-altering mutations. Because cis-regulatory elements have epigenetic marks of specific histone modifications, we can detect cis-regulatory elements by mapping and analyzing them. Here, we investigated histone modifications and chromatin accessibility with cleavage under targets and tagmentation (CUT&Tag) and assay for transposase-accessible chromatin-sequencing (ATAC-seq).

Results
Using the threespine stickleback (Gasterosteus aculeatus) as a model, we confirmed that the genes for which nearby regions showed active marks, such as H3K4me1, H3K4me3, and high chromatin accessibility, were highly expressed. In contrast, the expression levels of genes for which nearby regions showed repressive marks, such as H3K27me3, were reduced, suggesting that our chromatin analysis protocols overall worked well. Genomic regions with peaks of histone modifications showed higher nucleotide diversity within and between populations. By comparing gene expression in the gills of the marine and stream ecotypes, we identified several insertions and deletions (indels) with transposable element fragments in the candidate cis-regulatory regions.

Conclusions
Thus, mapping and analyzing histone modifications can help identify cis-regulatory elements and accelerate the identification of causative mutations in the non-coding regions underlying naturally occurring phenotypic variations.
Association between sleep duration and possible sarcopenia in middle-aged and elderly Chinese individuals: evidence from the China health and retirement longitudinal study
Authors: Chen Linfeng , Li Qingyun , Huang Xiaoyun , Li Zhong 
Published: July 2024

Abstract
Background
Sarcopenia is a common cause of disability in the aging population, and managing sarcopenia is an important step in building intrinsic capacity and promoting healthy aging. A growing body of evidence suggests that sleep deprivation may be a mediator of the development of sarcopenia. The purpose of this study was to explore the longitudinal association between sleep duration and possible sarcopenia using data from a national sample.

Methods
Two waves of data from the CHARLS database for 2011 and 2015 were used in this study. All possible sarcopenia participants met the Asia Working Group for Sarcopenia 2019 (AWGS 2019) diagnostic criteria. Sleep duration was assessed using a self-report questionnaire, and sleep duration was categorized as short (≤ 6 h), medium (6–8 h), or long (> 8 h) based on previous studies. Longitudinal associations between sleep duration and possible sarcopenia will be calculated by univariate and multifactorial logistic regression analyses and expressed as odds ratios (ORs) and 95% confidence intervals (CIs).

Results
A total of 5654 individuals participated in the follow-up study, with a prevalence of possible sarcopenia of 53.72% (578) in the short sleep duration group, 38.29% (412) in the medium sleep duration group, and 7.99% (86) in the long sleep duration group. According to the crude model of the second-wave follow-up study, short sleep durations were significantly more strongly associated with possible sarcopenia than were medium and long sleep durations (OR: 1.35, 95% CI: 1.17–1.55, P = 0.000). The association between short sleep duration and possible sarcopenia was maintained even after adjustment for covariates such as age, gender, residence, education level, BMI, smoking status, alcohol consumption and comorbidities (OR: 1.18, 95% CI: 1.02–1.36, P = 0.029). In the subgroup analysis, short sleep duration was associated with low grip strength (OR: 1.20, 95% CI: 1.02–1.41, P = 0.031).

Conclusions
Sleep deprivation may be closely associated with the development of possible sarcopenia in middle-aged and elderly people, which provides new insights and ideas for sarcopenia intervention, and further studies are needed to reveal the underlying mechanisms involved.
Atypical chronic myeloid leukemia found in a patient with eosinophilia for six years: a case report
Authors: Jiang Moqin , Chen Meng , Yan Lixiang , Zhang Ying , Yang Xiangdong , Zhang Weifeng 
Published: July 2024

Abstract
Background
Atypical chronic myeloid leukemia (aCML) is a highly aggressive type of blood cancer that falls under the category of myelodysplastic/myeloproliferative neoplasms (MDS/MPN). In the fifth edition of the WHO classification of tumors, this category has been renamed MDS/MPN with neutrophilia. Although eosinophilia is commonly observed in blood cancers, it is rarely seen in aCML.

Case presentation
This study presents a case of aCML that was diagnosed six years after the patient developed eosinophilia. The patient had undergone tests to rule out other primary and secondary diseases, but the eosinophilia remained unexplained. Treatment with corticosteroids and hydroxyurea had proven ineffective. Six years later, the patient experienced an increase in white blood cells, primarily neutrophils. After ruling out other possible diagnoses, a combination of morphologic and molecular genetic findings led to the diagnosis of aCML. The patient responded well to treatment with azacitidine.

Conclusions
This study summarizes the current state of aCML diagnosis and management and discusses the possible connection between eosinophilia and aCML.
Preoperative prediction of histopathological grading in patients with chondrosarcoma using MRI-based radiomics with semantic features
Authors: Li Xiaofen , Zhang Jingkun , Leng Yinping , Liu Jiaqi , Li Linlin , Wan Tianyi , Dong Wentao , Fan Bing , Gong Lianggeng 
Published: July 2024

Abstract
Background
Distinguishing high-grade from low-grade chondrosarcoma is extremely vital not only for guiding the development of personalized surgical treatment but also for predicting the prognosis of patients. We aimed to establish and validate a magnetic resonance imaging (MRI)-based nomogram for predicting preoperative grading in patients with chondrosarcoma.

Methods
Approximately 114 patients (60 and 54 cases with high-grade and low-grade chondrosarcoma, respectively) were recruited for this retrospective study. All patients were treated via surgery and histopathologically proven, and they were randomly divided into training (n = 80) and validation (n = 34) sets at a ratio of 7:3. Next, radiomics features were extracted from two sequences using the least absolute shrinkage and selection operator (LASSO) algorithms. The rad-scores were calculated and then subjected to logistic regression to develop a radiomics model. A nomogram combining independent predictive semantic features with radiomic by using multivariate logistic regression was established. The performance of each model was assessed by the receiver operating characteristic (ROC) curve analysis and the area under the curve, while clinical efficacy was evaluated via decision curve analysis (DCA).

Results
Ultimately, six optimal radiomics signatures were extracted from T1-weighted imaging (T1WI) and T2-weighted imaging with fat suppression (T2WI-FS) sequences to develop the radiomics model. Tumour cartilage abundance, which emerged as an independent predictor, was significantly related to chondrosarcoma grading (p < 0.05). The AUC values of the radiomics model were 0.85 (95% CI, 0.76 to 0.95) in the training sets, and the corresponding AUC values in the validation sets were 0.82 (95% CI, 0.65 to 0.98), which were far superior to the clinical model AUC values of 0.68 (95% CI, 0.58 to 0.79) in the training sets and 0.72 (95% CI, 0.57 to 0.87) in the validation sets. The nomogram demonstrated good performance in the preoperative distinction of chondrosarcoma. The DCA analysis revealed that the nomogram model had a markedly higher clinical usefulness in predicting chondrosarcoma grading preoperatively than either the rad-score or clinical model alone.

Conclusion
The nomogram based on MRI radiomics combined with optimal independent factors had better performance for the preoperative differentiation between low-grade and high-grade chondrosarcoma and has potential as a noninvasive preoperative tool for personalizing clinical plans.
Neuromyelitis Optica spectrum disorder complicated with pure red cell aplasia: a case report
Authors: Jiang Wanqing , Wang Jue , Feng Yu , Liu Qian , Liu Mingjun , Sun Huiying , Zhang Kun , Ji Qingyu , Jia Peifei , Liu Xuewen 
Published: July 2024

Abstract
Background
Pure red cell aplasia (PRCA) in neuromyelitis optica spectrum disorder (NMOSD) has not been reported before. This study presents a patient with NMOSD who developed PRCA.

Case presentation
A 54-year-old female was admitted in January 2023 for dysuria and progressive numbness and weakness of lower limbs. She had difficulty standing and walking in a straight line. Both lower limbs were positive for the Babinski and Chaddock signs. MRI showed abnormal signals in the spinal cord. Aquaporin-4-IgG (AQP-4-IgG) was positive (1:320), and NMOSD was confirmed. Intravenous immunoglobulin and methylprednisolone were given, and the symptoms improved. She received maintenance treatment with methylprednisolone tablets, and the dosage was gradually reduced. She was readmitted for fatigue, palpitations, and shortness of breath in May 2023. Bone marrow aspiration and biopsy showed elevated erythroid precursors and erythroid hypoplasia, with normal megakaryocytes and myeloid precursors. Chest CT showed no mediastinal lymph node enlargement or thymoma. PRCA secondary to NMOSD was diagnosed. Recombinant human erythropoietin was given. Her condition improved after 1.5 months, as indicated by blood cell count and imaging.

Conclusions
This case suggests that PRCA can be secondary to NMOSD. A comprehensive immune function and bone marrow evaluation might be necessary if abnormal blood cells are found while managing NMOSD.
Assessment of women’s needs and wishes regarding interprofessional guidance on oral health in pregnancy – a qualitative study
Authors: Ebinghaus Merle , Agricola Caroline Johanna , Schmittinger Janne , Makarova Nataliya , Zyriax Birgit-Christiane 
Published: July 2024

Abstract
Background
Poor oral and dental health due to oral dysbiosis during pregnancy increases the risk for negative pregnancy outcomes. Communicating the importance of oral health is therefore essential in reducing the risk of adverse pregnancy outcomes. Professional guidance could substantially support women’s positive perception of their own competence. Information on oral health should be provided by healthcare professionals such as midwives, obstetricians and dentists. The aim of this study was to assess the needs, wishes and preferences of pregnant women in Germany, regarding interprofessional collaboration and guidance on oral health during pregnancy.

Methods
Sources of information, preferences regarding information supply as well as the need for interprofessional collaboration of involved healthcare professions were investigated in six online focus groups with pregnant women. In addition, three expert interviews with a midwife, an obstetrician and a dentist were conducted. The focus groups and interviews were analysed using qualitative content analysis according to Kuckartz.

Results
25 pregnant women participated in focus groups. Pregnant women in all trimesters, aged 23 to 38 years, were included. Many women did not receive any or received insufficient information on oral health during pregnancy and wished for more consistent and written information from all involved healthcare providers. The extent of oral health counselling women received, heavily relied on their personal initiative and many would have appreciated learning about the scientific connection between oral health and pregnancy outcomes. An overall uncertainty about the timing and safety of a dental visit during pregnancy was identified. Interviews with experts provided additional insights into the working conditions of the involved healthcare professionals in counselling and emphasised the need for improved training on oral health during pregnancy in their respective professional education as well as thematic billing options in relation to this topic.

Conclusion
Guidance of women on oral health during pregnancy appears to be insufficient. Providing information adapted to the needs, wishes and preferences of women during pregnancy as well as the implementation of this topic in the education of involved healthcare professionals could contribute to an improved prenatal care for pregnant women and subsequently a reduced risk of negative pregnancy outcomes.
Understanding the experience, treatment preferences and goals of people living with chronic lymphocytic leukemia (CLL) in Australia
Authors: Fifer Simon , Godsell Jenni , Opat Stephen , Hamad Nada , Lasica Masa , Forsyth Cecily , Morand Louisa , Smeaton Erica , Winton Sharon , Puig Andrea , McGeachie Marija 
Published: July 2024

Abstract
Background
Listening to patient voices is critical, in terms of how people experience their condition as well as their treatment preferences. This research explored the patient journey, therapy attributes and goals among treatment experienced adults with chronic lymphocytic leukemia (CLL). We sought to understand patient experiences, needs and expectations to identify areas for improvement of treatment and care delivery.

Methods
Two online surveys were developed for completion by CLL patients. In Stage 1, participants completed a best-worst scaling (BWS) task to evaluate eleven previously validated healthcare journey moments that matter (MTM). Responses were used to generate the patient experience index (PEI) score. In Stage 2, participants completed a survey that included both a discrete choice experiment (DCE) to assess drivers of treatment preferences by evaluating the relative attribute importance (RAI) of seven features and a BWS exercise which explored long-term treatment goals.

Results
Twenty-five patients completed Stage 1 and thirty patients Stage 2. Treatment experience was balanced between oral and intravenous medication. The most important/least satisfied MTM were treatment effectiveness, access to support and other treatments as well as monitoring progress. The median PEI score was 66.2 (out of 100). DCE results demonstrated that patients most value treatments for CLL that are associated with prolonged progression free survival (PFS; RAI: 24.6%), followed by treatments that have a lower risk of severe side effects and lower out-of-pocket costs (RAI: 19.5%, 17.4%, respectively). The remainder of the weight in decision making (38.5%) was split between the remaining attributes, namely ‘mild to moderate side effects’ (13.4%), ‘long-term risks’ (12.2%), type of treatment (i.e., oral, IV or a combination of oral and IV; 8.7%) and treatment duration (i.e., ongoing versus fixed; 4.2%). Patients preferred oral to intravenous therapy. The most valued long-term treatment goal was to be physically healthy, followed by living a long life, spending time with family/friends, and avoiding hospitalization.

Conclusion
Treatment experienced patients with CLL are focused on receiving effective, safe therapies and value long PFS. Consideration and discussion of other attributes, such as once daily dosing, oral only medication, out-of-pocket costs and access to support services may affect patient treatment choices and ultimately enhance their healthcare experience and outcomes.
Straight intramedullary MultiLoc nails for displaced proximal humeral fractures: health status, radiographic results, clinical outcome, and complications
Authors: Chen Wei , Zhang Zhenhua , Zhu Chunhui , Song Zhiwen , Liu Zhiyuan 
Published: July 2024

Abstract
Background
The treatment of the displaced proximal humerus fractures (PHF) still facing a lot of unsolved problems. The aim of this study was to evaluate the clinical effect of MultiLoc nails for the treatment of PHF and present outcomes of patients with different Neer’s classification and reduction quality.

Methods
Adult patients with PHFs were recruited and treated with MultiLoc nail. Intraoperative data, radiographic and functional outcomes, as well as occurrence of postoperative complications were assessed.

Results
48 patients met inclusion and exclusion criteria and were included in this study. The DASH Score were 32.2 ± 3.1 points at 12 months, and 37.3 ± 2.5 points at the final follow-up. The mean ASES score at 12 months and final follow-up were 74.4 ± 6.2 and 78.8 ± 5.1, respectively. The mean CM Score in all 48 patients reached 68 ± 6.4 points at the final follow-up, relative side related CM Score 75.2 ± 7.7% of contralateral extremity. The incidence rate of complications was 20.8%. Patients with fracture mal-union, adhesive capsulitis were observed but no secondary surgeries were performed. There was no significantly difference of DASH Score 12 months after surgery and at the last follow-up among patients with different Neer’s classification or reduction quality. However, functional outcomes such as ASES score and CM score were significantly influenced by severity of fracture and the quality of fracture reduction.

Conclusions
Our study demonstrated that MultiLoc nails is well suited for proximal humeral fractures, with satisfactory health status recovery, good radiographic results, positive clinical outcomes and low rates of complications. The treatment for four part PHF still faces great challenges. Accurate fracture reduction was an important factor for good functional result.
Appropriateness of the EQ-5D-5L in capturing health-related quality of life in individuals with transfusion-dependent β-thalassemia: a mixed methods study
Authors: Boateng-Kuffour Adriana , Skrobanski Hanna , Drahos Jennifer , Kohli Puja , Forster Katie , Acaster Sarah , Pakbaz Zahra , Li Nanxin , Williams Kate 
Published: July 2024

Abstract
Background
Individuals with transfusion-dependent β-thalassemia (TDT) experience symptoms and functional impacts that reduce their health-related quality of life. However, EQ-5D-derived health utility index scores in TDT often indicate good HRQoL, suggesting the EQ-5D may not adequately capture the impact of TDT. This study explored the disease and treatment burden of TDT and examined the appropriateness of the EQ-5D-5L descriptive system (DS) in measuring HRQoL in TDT.

Methods
Adults with TDT in the United Kingdom, United States, and France completed a background questionnaire and EQ-5D-5L DS, followed by 60-minute semi-structured interviews on symptoms and HRQoL impacts of TDT (concept elicitation) and appropriateness of EQ-5D-5L DS (cognitive debrief). Transcribed interviews were analyzed using thematic and content analyses. The relationship between TDT symptoms and impacts were summarized in a conceptual model. EQ-5D-5L DS was mapped to concepts identified in the qualitative data to assess its capture of HRQoL concepts. Participants’ EQ-5D-5L DS scores were compared to their qualitative descriptions for each dimension to assess their concordance.

Results
Thirty participants in the United States (n = 14 [46.7%]), United Kingdom. (n = 12 [40.0%]), and France (n = 4 [13.3%]) completed the study (73.3% female; mean age = 28.4 years [standard deviation (SD) = 5.1]; mean annual red blood cell transfusion [RBCT] frequency = 18.4 [SD = 7.6]). Participants reported TDT symptoms and impacts on HRQoL, all fluctuating across the RBCT cycle. EQ-5D-5L DS did not fully capture 11 of 16 (68.8%) HRQoL concepts reported. Most participants (n = 20/27 [74.1%]) reported that EQ-5D-5L DS did not capture important aspects of living with TDT, and 42.9% (n = 12/28) reported negative/neutral overall impressions of EQ-5D-5L DS. The highest degree of discordance between participants’ qualitative data and EQ-5D-5L DS dimension scores was observed with mobility (42.3%) and self-care (34.6%), where the qualitative descriptions relating to these dimensions were worse than their quantitative scores.

Conclusion
Current findings suggest that EQ-5D-5L DS lacks content validity and the derived health utility index score may not fully represent the burden of disease in TDT.