Yoxas/statistical_literacy huggingface dataset:
Past research in the Western context found that people with dementia search for digital dementia information in peer-reviewed medical research articles, dementia advocacy and medical organizations, and blogs written by other people with dementia. This past work also demonstrated that people with dementia do not perceive English digital dementia information as emotionally or cognitively accessible. In this study, we sought to investigate the readability; linguistic, psychological, and emotional characteristics; and target audiences of digital dementia information. We conducted a textual analysis of 3 different types of text-based digital dementia information written in English: 300 medical articles, 35 websites, and 50 blogs. We assessed the text's readability using the Flesch Reading Ease and Flesch-Kincaid Grade Level measurements, as well as tone, analytical thinking, clout, authenticity, and word frequencies using a natural language processing tool, Linguistic Inquiry and Word Count Generator. We also conducted a thematic analysis to categorize the target audiences for each information source and used these categorizations for further statistical analysis. The median Flesch-Kincaid Grade Level readability score and Flesch Reading Ease score for all types of information (N=1139) were 12.1 and 38.6, respectively, revealing that the readability scores of all 3 information types were higher than the minimum requirement. We found that medical articles had significantly (P=.05) higher word count and analytical thinking scores as well as significantly lower clout, authenticity, and emotional tone scores than websites and blogs. Further, blogs had significantly (P=.48) higher word count and authenticity scores but lower analytical scores than websites. Using thematic analysis, we found that most of the blogs (156/227, 68.7%) and web pages (399/612, 65.2%) were targeted at people with dementia. Website information targeted at a general audience had significantly lower readability scores. In addition, website information targeted at people with dementia had higher word count and lower emotional tone ratings. The information on websites targeted at caregivers had significantly higher clout and lower authenticity scores. Our findings indicate that there is an abundance of digital dementia information written in English that is targeted at people with dementia, but this information is not readable by a general audience. This is problematic considering that people with <12 years of education are at a higher risk of developing dementia. Further, our findings demonstrate that digital dementia information written in English has a negative tone, which may be a contributing factor to the mental health crisis many people with dementia face after receiving a diagnosis. Therefore, we call for content creators to lower readability scores to make the information more accessible to a general audience and to focus their efforts on providing information in a way that does not perpetuate overly negative narratives of dementia.
Past studies on schizophrenia (SCZ) and the stress-sensitive neuroendocrine systems have mostly focused on a single system and traditionally utilized acute biomarkers (e.g., biomarkers from blood, urine and saliva) that poorly match the chronic course of schizophrenia in time span. Using eight biomarkers in hair, this study aimed to explore the functional characteristics of SCZ patients in the hypothalamic-pituitary-adrenocortical (HPA) and hypothalamic-pituitary-gonadal (HPG) axes and the interaction between the two axes. Hair samples were taken from 137 SCZ patients and 73 controls. The SCZ patients were diagnosed by their attending physician according to the Diagnostic and Statistical Manual of Mental Disorders IV and were clinically stable after treatment. Gender, age, BMI, frequency of hair washing, marital status, education level, family history of mental illness and clozapine dosage were concurrently collected as covariates. The 10-item perceived stress scale (PSS-10) and the social readjustment rating scale were used to assess chronic stress status in SCZ patients. Eight hair biomarkers, cortisol, cortisone, dehydroepiandrosterone (DHEA), testosterone, progesterone, cortisol/cortisone, cortisol/DHEA and cortisol/testosterone, were measured by high performance liquid chromatography tandem mass spectrometer. Among them, cortisol, cortisone, DHEA and cortisol/DHEA reflected the functional activity of the HPA axis, and testosterone and progesterone reflected the functional activity of the HPG axis, and cortisol/cortisone reflected the activity of 11β-hydroxysteroid dehydrogenase types 2 (11β-HSD 2), and cortisol/testosterone reflected the HPA-HPG interaction. SCZ patients showed significantly higher cortisone and cortisol/testosterone than controls (p<0.001, η²p=0.180 and p=0.015, η²p=0.031), lower testosterone (p=0.009, η²p=0.034), progesterone (p<0.001, η²p=0.069) and cortisol/cortisone (p=0.001, η²p=0.054). There were significant intergroup differences in male and female progesterone (p=0.003, η²p=0.088 and p=0.030, η²p=0.049) and female testosterone (p=0.028, η²p=0.051). In SCZ patients, cortisol, cortisol/cortisone, cortisol/DHEA and cortisol/testosterone were positively associated with PSS-10 score (ps<0.05, 0.212<rs< 0.265). The function of the HPA and HPG axes, the activity of 11β-HSD 2 and the HPA-HPG interaction were abnormal in SCZ patients. The abnormality of neuroendocrine systems was associated with chronic stress status in SCZ patients. This study provided evidence for abnormalities in the neuroendocrine systems in SCZ patients.
Pathogenic constitutional APC variants underlie familial adenomatous polyposis, the most common hereditary gastrointestinal polyposis syndrome. To improve variant classification and resolve the interpretative challenges of variants of uncertain significance (VUS), APC-specific ACMG/AMP variant classification criteria were developed by the ClinGen-InSiGHT Hereditary Colorectal Cancer/Polyposis Variant Curation Expert Panel (VCEP). A streamlined algorithm using the APC -specific criteria was developed and applied to assess all APC variants in ClinVar and the InSiGHT international reference APC LOVD variant database. A total of 10,228 unique APC variants were analysed. Among the ClinVar and LOVD variants with an initial classification of (Likely) Benign or (Likely) Pathogenic, 94% and 96% remained in their original categories, respectively. In contrast, 41% ClinVar and 61% LOVD VUS were reclassified into clinically actionable classes, the vast majority as (Likely) Benign. The total number of VUS was reduced by 37%. In 21 out of 36 (58%) promising APC variants that remained VUS despite evidence for pathogenicity, a data mining-driven work-up allowed their reclassification as (Likely) Pathogenic. The application of APC -specific criteria substantially reduced the number of VUS in ClinVar and LOVD. The study also demonstrated the feasibility of a systematic approach to variant classification in large datasets, which might serve as a generalisable model for other gene-/disease-specific variant interpretation initiatives. It also allowed for the prioritization of VUS that will benefit from in-depth evidence collection. This subset of APC variants was approved by the VCEP and made publicly available through ClinVar and LOVD for widespread clinical use.
Pathology education is a core component of medical training, and its literature is critical for refining educational modalities. We performed a cross-sectional bibliometric analysis to explore publications on pathology education, focusing on new medical education technologies. The analysis identified 64 pathology journals and 53 keywords. Relevant articles were collected using a web application, PaperScraper, developed to accelerate literature search. Citation data were collected from multiple sources. Descriptive statistics, with time period analysis, were performed using Microsoft Excel and visualised with Flourish Studio. Two article groups were further investigated with a bibliometric software, VOSViewer, to establish co-authorship and keyword relationships. 8946 citations were retrieved from 905 selected articles. Most articles were published in the last decade (447, 49.4%). The top journals were Archives of Pathology & Laboratory Medicine (184), Human Pathology (122) and the American Journal of Clinical Pathology (117). The highest number of citations was found for Human Pathology (2120), followed by Archives of Pathology & Laboratory Medicine (2098) and American Journal of Clinical Pathology (1142). Authors with different backgrounds had the greatest number of articles and citations. 12 co-authorship, 3 keyword and 8 co-citation clusters were found for the social media/online resources group, 8 co-authorship, 4 keyword and 7 co-citation clusters for the digital pathology/virtual microscopy/mobile technologies group. The analysis revealed a significant increase in publications over time. The emergence of digital teaching and learning resources played a major role in this growth. Overall, these findings underscore the transformative potential of technology in pathology education.
Pathways to mental health services for youth are generally complex and often involve numerous contact points and lengthy delays. When starting treatment, there are a host of barriers that contribute to low rates of therapeutic engagement. Automated text messages offer a convenient, low-cost option for information sharing and skill building, and they can potentially activate positive behaviors in youth and caregivers prior to beginning formal therapy. To date, there is little evidence for the feasibility of initiating transdiagnostic text messages during the early stages of youth and caregiver contact with community outpatient mental health services. To develop and test the feasibility of implementing 2 novel text messaging campaigns aimed at youth clients and their caregivers during the early stages of engaging with outpatient mental health services. A multidisciplinary panel of experts developed two 12-message interventions with youth and caregivers prior to deployment. Each message included a link to an external interactive or multimedia resource to extend skill development. Enrollment of youth aged 13 to 18 years, their caregivers, or both occurred at 2 early treatment timepoints. At both time points, text messages were delivered automatically 2 times a week for 6 weeks. Analytics and survey data were collected in 2 phases, between January and March 2020 and between January and May 2021. Enrollment, willingness to persist in using the intervention, engagement, satisfaction, perceived value, and impact were measured. Descriptive statistics were used to summarize youth and caregiver outcomes. A total of 41 caregivers and 36 youth consented to participate. Follow-up survey response rates were 54% (22/41) and 44%, (16/36) respectively. Over 1500 text messages were sent throughout the study. More than three-quarters (14/16, 88%) of youth reported that they learned something new and noticed a change in themselves due to receiving the texts; the same proportion (14/16, 88%) of youth said they would recommend the text messages to others. Youth ranked the first text message, related to coping with difficult emotions, as the most helpful of the series. Caregivers reported acting differently due to receiving the texts. Over two-thirds of caregivers were satisfied with the texts (16/22, 73%) and would recommend them to others (16/22, 73%). Caregivers perceived diverse levels of value in the text topics, with 9 of the 12 caregiver texts rated by at least one caregiver as the most helpful. Results are preliminary but show that brief, core skill-focused text messages for youth clients and caregivers in community outpatient mental health services are feasible. Both youth and caregivers reported promising knowledge and behavior change with exposure to only 12 messages over 6 weeks. A larger study with statistical power to detect changes in both perceived helpfulness and engagement is required to confirm the effectiveness of this type of transdiagnostic intervention.
Patient activation refers to the knowledge, confidence and skills required for the management of chronic disease and is antecedent to self-management. Greater self-management in chronic kidney disease (CKD) results in improved patient experience and patient outcomes. To examine patient activation levels in people with CKD stage 5 pre-dialysis and determine associations with sociodemographic characteristics, treatment adherence and healthcare utilisation. People with CKD stage 5 not receiving dialysis from one Australian kidney care service. Patient activation was measured using the 13-item Patient Activation Measure (PAM-13). Sociodemographic and clinical outcome data (emergency department visits, admissions) were collected from medical records. Morisky Medication Adherence Scale was used to determine self-report medication adherence. Two hundred and four participants completed the study. The mean PAM-13 score was 53.4 (SD 13.8), with 73% reporting low activation levels (1 and 2). Patient activation scores significantly decreased with increased age (P < 0.001) and significantly increased with higher educational levels (P < 0.001). Higher patient activation level was associated with fewer hospital emergency department visits (P = 0.03) and increased medication adherence (P < 0.001). Patient activation levels are low in people with CKD stage 5 not receiving dialysis suggesting limited ability for self-management and capacity for optimally informed decisions about their healthcare. Efforts to improve patient activation need to consider age and education level.
Patient agency in contraceptive decision-making is an essential component of reproductive autonomy. We aimed to develop a psychometrically robust measure of patient contraceptive agency in the clinic visit, as a measure does not yet exist. For scale development, we generated and field tested 54 questionnaire items, grounded in qualitative research. We used item response theory-based methods to select and evaluate scale items for psychometric performance. We iteratively examined model fit, dimensionality, internal consistency, internal structure validity, and differential item functioning to arrive at a final scale. A racially/ethnically diverse sample of 338 individuals, aged 15-34 years, receiving contraceptive care across nine California clinics in 2019-2020. Contraceptive Agency Scale (CAS) of patient agency in preventive care. Participants were 20.5 mean years, with 36% identifying as Latinx, 26% White, 20% Black, 10% Asian/Native Hawaiian/Pacific Islander. Scale items covered the domains of freedom from coercion, non-judgmental care, and active decision-making, and loaded on to a single factor, with a Cronbach's α of 0.80. Item responses fit a unidimensional partial credit item response model (weighted mean square statistic within 0.75-1.33 for each item), met criteria for internal structure validity, and showed no meaningful differential item functioning. Most participants expressed high agency in their contraceptive visit (mean score 9.6 out of 14). One-fifth, however, experienced low agency or coercion, with the provider wanting them to use a specific method or to make decisions for them. Agency scores were lowest among Asian/Native Hawaiian/Pacific Islander participants (adjusted coefficient: -1.5 [-2.9, -0.1] vs. White) and among those whose mothers had less than a high school education (adjusted coefficient; -2.1 [-3.3, -0.8] vs. college degree or more). The Contraceptive Agency Scale can be used in research and clinical care to reinforce non-coercive service provision as a standard of care.
Patient case simulation software are described in pharmacy education literature as useful tools to improve skills in patient assessment (including medication history-taking and physical assessment), clinical reasoning and communication, and are typically well-received by students and instructors. The virtual interactive case (VIC) system is a web-based software developed to deliver deliberate practice opportunities in simulated patient encounters across a spectrum of clinical topics. This article describes the implementation and utilization of VIC in the undergraduate curriculum at one Canadian pharmacy school. Methods: At our facility, the use of VIC was integrated across the training spectrum in the curriculum, including core and elective didactic courses and practice labs, experiential learning, interprofessional education, and continuing education. Its use was evaluated through student and instructor surveys and qualitative student interviews). VIC is easy to navigate and created a positive and realistic learning environment. Students identified that it enhanced their ability to identify relevant patient information, accurately simulated hospital pharmacy practice and thereby helped them to prepare for their upcoming experiential courses. The use of VIC has expanded beyond its original intended purpose for individual student practice to become a valuable addition to pharmacy undergraduate education. Future plans include ongoing development of cases and exploration of further uses of VIC within the didactic curriculum, for remediation in experiential courses, and for pharmacist continuing education.
Patient education in chronic obstructive pulmonary disease (COPD) is recommended in treatment strategy documents, since it can improve the ability to cope with the disease. Our aim was to identify the extent of and factors associated with patient education in patients with COPD in a primary health care setting. In this nationwide study, we identified 29,692 COPD patients with a registration in the Swedish National Airway Register (SNAR) in 2019. Data on patient education and other clinical variables of interest were collected from SNAR. The database was linked to additional national registers to obtain data about pharmacological treatment, exacerbations and educational level. Patient education had been received by 44% of COPD patients, 72% of whom had received education on pharmacological treatment including inhalation technique. A higher proportion of patients who had received education were offered smoking cessation support, had performed spirometry and answered the COPD Assessment Test (CAT), compared with patients without patient education. In the adjusted analysis, GOLD grade 2 (OR 1.29, 95% CI 1.18-1.42), grade 3 (OR 1.41, 95% CI 1.27-1.57) and grade 4 (OR 1.79, 95% CI 1.48-2.15), as well as GOLD group E (OR 1.17, 95% CI 1.06-1.29), ex-smoking (OR 1.70, 95% CI 1.56-1.84) and current smoking (OR 1.45, 95% CI 1.33-1.58) were positively associated with having received patient education, while cardiovascular disease (OR 0.92, 95% CI 0.87-0.98) and diabetes (OR 0.93, 95% CI 0.87-1.00) were negatively associated with receipt of patient education. Fewer than half of the patients had received patient education, and the education had mostly been given to those with more severe COPD, ex- and current smokers and patients with fewer comorbidities. Our study highlights the need to enhance patient education at an earlier stage of the disease.
Patient education is a critical component of healthcare delivery. However, medical information and knowledge are complex and can be difficult for patients and families to comprehend when delivered verbally. The use of virtual reality (VR) to convey medical information to patients may bridge this communication gap and lead to more effective patient education. It may be of increased value to those with low health literacy and levels of patient activation, in rural and regional settings. The objective of this randomised, single-centre pilot study is to examine the feasibility and preliminary effectiveness of VR as an education tool for people with cancer. The results will provide data to inform the feasibility of a future randomised controlled trial, including sample size calculations. Patients with cancer undergoing immunotherapy will be recruited. A total of 36 patients will be recruited and randomised to one of three trial arms. Participants will be randomised 1:1:1 to receive VR, a two-dimensional video or standard care (ie, verbal communication and information leaflets). Feasibility will be assessed by recruitment rate, practicality, acceptability, usability and related adverse events. The potential impact of VR on patient-reported outcomes (ie, perceived information provision quality, knowledge about immunotherapy and patient activation) will be assessed and stratified by information coping style (ie, monitors vs blunters) whenever statistical analyses are significant. The patient-reported outcomes will be measured at baseline, post-intervention and 2 weeks post-intervention. In addition, semistructured interviews will be conducted with health professionals and participants randomised to the VR trial arm, to further explore acceptability and feasibility. Ethics approval was obtained from the Greater Western Human Research Ethics Committee, New South Wales Local Health District (2022/ETH01760). Informed consent will be obtained from all participants. Findings will be disseminated via relevant conference presentations and publications in peer-reviewed journals. ACTRN12622001473752.
Patient education is integral to the treatment and care of patients with rheumatoid arthritis. Change is taking place in the organisation of healthcare systems because of a demographic shift towards ageing populations, an increasing use of technology and advancements in digital technologies, allowing for new interventions. This study will aim to evaluate the effectiveness of a newly developed e-learning patient education programme based on self-management that targets patients with rheumatoid arthritis. A pragmatic multi-centre randomised controlled trial is planned. We intend to recruit approximately 200 patients with a new diagnosis (< 3 months) of rheumatoid arthritis. Participants will be randomised 1:1 to web-based patient education delivered through an e-learning programme at home or standard face-to-face patient education provided at the hospital. The primary outcome is self-efficacy. Secondary outcomes are improved knowledge of rheumatoid arthritis, adherence to medication, health literacy level and quality of life. Outcomes will be measured at baseline and follow-up occurring 1, 3, 6 and 12 months after enrolment. Furthermore, data on healthcare utilisation and utilisation of the e-learning programme will be assessed at the 12-month follow-up. Statistical analysis, including differences between groups, will be evaluated using the chi-square and Kruskal-Wallis tests. Statistical analysis will follow the intention-to-treat principle, and analysis of variance will be used to evaluate the within- and between-groups differences testing the hypothesis of the 'superiority' of web-based patient education over standard face-to-face education provided at the hospital. Per protocol analysis will be used to assess the impact of missing data. Enrolment started in February 2021 and will end in June 2022. The study is expected to contribute to the evidence on the effectiveness of web-based patient education within rheumatic diseases. If the e-learning programme is effective, it will be incorporated into existing services to improve the self-management of patients with rheumatoid arthritis. Further, this mode of providing patient education may impact the organisation of health care for both rheumatic diseases and other chronic diseases by offering different modes of delivering patient education based on the needs and preferences of patients. ClinicalTrials.gov identifier NCT04669340. Registered on November 27, 2020. https://www.clinicaltrials.gov/ct2/show/NCT04669340?term=e-learning&cond=Rheumatoid+Arthritis&draw=2&rank=1 . See Additional file 1 for detailed information on the dataset according to the World Health Organization Trial Registration Data Set.