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The coronavirus disease 2019 (COVID-19) pandemic had a major impact on global health and was associated with millions of deaths worldwide. During the pandemic, imaging characteristics of chest X-ray (CXR) and chest computed tomography (CT) played an important role in the screening, diagnosis and monitoring the disease progression. Various studies suggested that quantitative image analysis methods including artificial intelligence and radiomics can greatly boost the value of imaging in the management of COVID-19. However, few studies have explored the use of longitudinal multi-modal medical images with varying visit intervals for outcome prediction in COVID-19 patients. This study aims to explore the potential of longitudinal multimodal radiomics in predicting the outcome of COVID-19 patients by integrating both CXR and CT images with variable visit intervals through deep learning. 2274 patients who underwent CXR and/or CT scans during disease progression were selected for this study. Of these, 946 patients were treated at the University of Pennsylvania Health System (UPHS) and the remaining 1328 patients were acquired at Stony Brook University (SBU) and curated by the Medical Imaging and Data Resource Center (MIDRC). 532 radiomic features were extracted with the Cancer Imaging Phenomics Toolkit (CaPTk) from the lung regions in CXR and CT images at all visits. We employed two commonly used deep learning algorithms to analyze the longitudinal multimodal features, and evaluated the prediction results based on the area under the receiver operating characteristic curve (AUC). Our models achieved testing AUC scores of 0.816 and 0.836, respectively, for the prediction of mortality. © 2023 SPIE.
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Objective. To assess the relationship between the severity of COVID-19 in patients without significant baseline cardiovascular pathology and various echocardiographic parameters of myocardial dysfunction. Material and methods. 46 patients with COVID-19 were included in our study: 33 patients of moderate severity and 13 - with severe disease. On days 1 and 9 upon admission, all patients underwent an echocardiographic study with standard assessment of the both ventricles function, as well as an assessment of their global longitudinal strain (GLS). Comparison of the studied parameters was carried out both between groups of patients and within each group in dynamics. Results. On day 1patients in the severe group had higher values of the systolic gradient on the tricuspid valve (22.0 [21.0;26.0] vs 30.0 [24.0;34.5] mm Hg, p = 0.02), systolic excursion of the plane of the tricuspid ring (2.3 [2.1;2.4] vs 2.0 [1.9;2.2] mm, p = 0.016), E/e' ratio (9.5 [7.7;8.9] vs 7.5 [6.8;9.3], p = 0.03). At day 9 among patients in the severe group, there was a decrease in end-diastolic (111.0 [100.0;120.0] vs 100.0 [89.0;105.0] ml, p = 0.03) and of end-systolic (35.5 [32.0;41, 2] vs 28.0 [25.0;31.8] ml, p < 0.01) volumes of the left ventricle. There was a decrease in GLS of the both ventricles compared to general accepted values. In dynamics, there was an increase in the GLS of the right ventricle in both groups, but it was more pronounced among severe group of patients (day 1 -18.5 [-15.2;-21.1] vs -20.2 [-15.8.1;-21.1] %, p = 0.03). The troponin levels were in the normal range. Conclusion. In COVID-19 patients without significant baseline cardiovascular pathology, there is a transient decrease in longitudinal strain of both ventricles, even in the absence of clinical and laboratory signs of acute myocardial injury.Copyright © Creative Cardiology 2021.
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The COVID-19 pandemic created unprecedented disruptions in models for engineering student training. At The Citadel, an undergraduate-focused college in the Southeastern United States, a variety of modalities were implemented following the onset of the pandemic, including emergency online and Hyflex learning. We conducted a longitudinal study to analyze the cognitive load among our undergraduate engineering students throughout changing modalities. Using data from the NASA Task Load Index (TLX) and open-ended reflections on student challenges, we found that total workload (a surrogate for cognitive load) was generally highest during emergency online learning in the second half of Spring 2020 semester, with experiences possibly varying across different demographic and academic groups. Emergency online challenges were often related to time management, personal organization, and responsibility for learning. In contrast, HyFlex challenges were often related to technology and communication challenges. While emergency online learning was a cognitive load disruption, that disruption was often associated with personal and/or academic development. HyFlex learning mediated cognitive load disruption;although, student challenges may have been simple nuisances rather than mediators of developmental change. © 2023 American Society of Civil Engineers.
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We examined early adolescent predictors of later distress and adaptive coping in early adulthood, using data from a prospective longitudinal cohort study (n = 786). In early adolescence (age 13), we assessed indicators of mental health (internalizing symptoms), stressor exposure (cumulative stressful life events), and family socialization (supportive parent–child interactions). In early adulthood (age 22), during the first COVID-19-related Swiss national lockdown, we assessed cumulative pandemic-related stressors, distress (poor well-being, hopelessness, and perceived disruptions to life) and adaptive coping. Early adolescent internalizing symptoms predicted lower well-being, more hopelessness, and perceived lifestyle disruptions in early adulthood, during the pandemic. Cumulative stressful life events during early adolescence moderated the association between cumulative pandemic-related stressors and perceived lifestyle disruptions. Supportive parent–child interactions fostered subsequent engagement in adaptive coping, which, in turn, predicted less hopelessness and better well-being. Findings reveal that early adolescent development is linked with distress and adaptive coping in later periods. [ FROM AUTHOR] Copyright of Journal of Early Adolescence is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)
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Cognitive impairment is a prominent symptom of the post-COVID syndrome (PCS). However, the correspondence between subjective cognitive complaints (SCC) and objective results is inconsistent. Here, we investigated this discrepancy. This longitudinal study included N = 42 individuals who reported SCC as PCS after mild infection at inclusion. Data collection comprised questionnaires and neuropsychological assessment at baseline and follow-up (FU). At FU - on average 15 months after acute COVID-19 - 88 % of patients reported persisting SCC. There was an approx. 40 % discrepancy between subjective report and test results at both visits. Patients with SCC and objective impairment indicated elevated fatigue and reduced quality of life compared to patients without SCC at FU. A growing number of patients is anticipated to request neuropsychological assessments even after mild infections.
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The sudden onset of the 2019 SARS-CoV-2 pandemic required agile development of standards and efficient validation of assays to assess prevalence of infection as well as immune responses to infection and vaccination. Leveraging their experience in HPV serology and standards, the Vaccine, Immunity and Cancer Directorate (VICD) at the Frederick National Laboratory for Cancer Research (FNCLR) pivoted to address this unmet need in SARS-Co-V2 serology clinical testing and research. This standardization effort required the collection and processing of large volumes of blood from SARS-Co-V2 infected and uninfected individuals into serum and peripheral blood mononuclear cells (PBMCs). Collaborations with specimen collection sites across the United States were established. Following qualification for anti-SARS-CoV-2 IgG and IgM levels in independent laboratories, VICD assembled reference evaluation panels, which were used to assist the FDA's performance evaluation of commercial assays submitted for EUA approval. To date, 185 different shipments of the standard or validation panel have been sent to both domestic and international labs. These materials are also available to the SARS-CoV-2 serology community for assay calibration and performance evaluation which greatly facilitates assay data harmonization. In addition, the NCI Serological Sciences Network (SeroNet) was born from this initiative and expertise, resulting in the establishment of Capacity Building Centers (CBCs) for sample collection from different healthy, cancer and immunocompromised cohorts at Mount Sinai, Arizona State University, the University of Minnesota, and Northwell Feinstein. The NCI and FNLCR simultaneously collaborated to develop a network of investigators focused on advancing research on the immune response to SARS-CoV-2 infection and vaccination among diverse and vulnerable populations, including cancer patients. Their research has resulted in over 326 peer-reviewed publications. The CBC's have enrolled patients in longitudinal studies, resulting in a centralized collection of annotated, well characterized serum, PBMCs and clinical data. Numerous cancer cohorts, but predominantly Multiple Myeloma, are included. Furthermore, technology development was supported at the CBC's. Based upon this success, the VICD in collaboration with NCI is pursuing an even more innovative effort in pandemic preparedness to establish a Center for Serology and Data Emergency Preparedness (CESDEP);a global network able to activate and pivot to address pandemic-level threats, while continuing to expand the development of immunological assays that can inform clinical decisions for cancer and other immunocompromised patients.
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The COVID-19 pandemic has had far-reaching impacts on many aspects of life, including sexual behaviours and preferences. In this longitudinal study, the authors used attachment theory to investigate changes in an individual's sexual desire for their partner as well as changes in their sexual desire for someone other than their primary romantic partner (extradyadic desire) over the first wave of the pandemic in Canada. Based on past research that has shown that avoidant individuals tend to avoid intimacy, the authors reasoned that increased contact with their romantic partner due to physical distancing guidelines and lockdown rules would contribute to avoidant individuals' experiencing less sexual desire for their partner and greater extradyadic desire over time. In contrast, individuals high on attachment anxiety tend to seek proximity, especially during times of stress. The authors predicted that individuals' sexual desire for their partner would increase and their extradyadic desire would decrease. They tested these hypotheses using a cohabiting, dyadic sample (N = 308 individuals);study participants were contacted at 1-month intervals for three successive months and asked to complete an online survey. Our hypotheses were partially supported. As predicted, individuals high on attachment avoidance experienced higher levels of extradyadic desire, and individuals high on attachment anxiety reported lower extradyadic desire over time. Contrary to predictions, however, neither attachment pattern was associated with changes in sexual desire for the partner. The authors examine the theoretical implications of these findings, highlighting the need for a more fine-grained assessment of stress and the interaction between stress and attachment orientations in future research.Copyright © Sex Information and Education Council of Canada, 2023.
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Objectives: To systematically review longitudinal studies to determine the prevalence and time-course of fatigue after stroke (post-stroke fatigue, PSF). Material(s) and Method(s): A study protocol was registered on PROSPERO. Five databases (PUBMED, MEDLINE, EMBASE, PSYCHINFO and CINAHL) were searched (10th to 13th June 2022). Citations were imported into Covidence software, s screened by one author, full texts of potentially eligible studies retrieved, and one author applied inclusion criteria (longitudinal cohort studies of patients with acute stroke). Quality assessment of included studies was performed using the Joanna Briggs institute tool for observational studies. A meta-analysis was performed for the prevalence of PSF at different time-points after stroke onset, and changes over time. Subgroup analyses were performed by type of stroke and study location. Result(s): A total of 13,991 records were returned from the searches. Nine studies were eligible and were included. Five studies were of strong and four of moderate quality. Of the studies suitable for meta-analysis, the prevalence of PSF was 42% (95% CI - 39-44%) at six months after ischaemic stroke;and 34% (95% CI - 28-40%) at one year in stroke survivors excluding subarachnoid haemorrhage. Subgroups analyses found no differences in PSF prevalence between Asian countries and others. Of those with PSF at first assessment, 66% (95% CI - 61-71%) remained fatigued at follow-up;of those without PSF initially, 15% (95% CI - 11-20%) developed PSF at follow-up. Conclusion(s): PSF is common and around two-thirds with fatigue remain fatigued. This justifies the development of new interventions for PSF treatment.Copyright © 2023 The Author(s)
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Úvod: Dlouhodobý stres je všeobecně považován za jeden z psychosociálních faktorů, který negativně ovlivňuje studijní výsledky studentů ošetřovatelství. Cíl: Zjistit, jaké jsou zdroje, úroveň stresu a strategie zvládaní stresu u studentů ošetřovatelství v kontinuu bakalářského studia. Metody: V průběhu tří akademických roků byli sledováni studenti jednotlivých ročníků bakalářského studijního programu Ošetřovatelství po absolvování klinické praxe v daném akademickém roku. Na sběr dat byly použity dotazníky Perceived Stress Scale;Physio-Psycho-Social Response Scale, and Coping Behavior Inventory. V 1. ročníku bylo do studie zařazeno 44 studentek, ve 2. ročníku 39 a v posledním ročníku 40 studentek. Výsledky: Nejvýznamnějším zdrojem stresu během tří ročníků studia byl stres z nedostatku vědomostí a zručností. Nejvyšší stres byl na začátku studia, pak klesal. Ve 3. ročníku, kdy v rámci covidové pandemie měli studenti nařízenou pracovní povinnost, opět dosáhl úrovně 1. ročníku. Stres se projevoval zejména v oblasti emocí. Nejčastěji užívanou copingovou strategií bylo řešení problémů. Závěr: Výsledky longitudinální studie potvrzují, jak pandemie covidu-19 ovlivnila percepci a projevy stresu u studentů během jejich studia. V percepci úrovně klinických i akademických stresorů a projevů stresu nebyla zjištěna jednoznačně klesající tendence. Využívání copingových strategií bylo stabilní, bez významnějších rozdílů během celého studia.Alternate :Introduction: Long-term stress is generally considered to be one of the psycho-social factors that negatively affect the academic performance of nursing students. Objectives: To discover the sources of stress, degree of stress, and coping strategies used as a reaction to stress in nursing students of the bachelor program. Methods: Over the course of three academic years, students in each year of the bachelor in nursing program were monitored after completing the clinical practice for the given academic year. Questionnaires regarding the Perceived Stress Scale;Physio-Psycho-Social Response Scale, and Coping Behaviour Inventory were used to gather data. In the first year, 44 students were included, in the second year there were 39 students, and in the final year 40 students took part in the research. Results: The most significant source of stress appears to be a lack of knowledge and relevant skills. The highest degree of stress was recorded at the beginning of a student's studies, after which it decreased. In the third year, when students were required to work due to the covid pandemic, the stress again reached the levels of the first year. The stress manifested mainly in emotions and problem solving was the most frequently used coping strategy. Conclusions: The results of the longitudinal study confirmed how the COVID-19 pandemic affected the perception and manifestation of stress in students during their studies. The perception of the degree of clinical and academic stressors showed that no clear descending tendency was identified. The use of coping strategies was stable, with no significant differences throughout the study.
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The 'ging' of artificial intelligence/machine learning (AI/ML) models after initial development and evaluation is known to frequently occur and can pose substantial problems. When there are changes in population, disease characteristics, imaging equipment, or protocols, model performance may start to deteriorate, and the performance predicted in a research setting may no longer hold after deployment (either in a clinical setting or in further research). This data shift phenomenon is a common problem in AI/ML. We trained and evaluated a previously in-house developed AI/ML model for COVID severity prediction using two COVID-19-positive consecutive adult patient cohorts from a single institution. The first cohort was from the time that the Delta strain was dominant accounting for <95% of cases (June 24-December 11, 2021, 820 patients, 1331 chest radiographs (CXRs)) and the second cohort was from the time that the Omicron variant was dominant (Jan 1-21, 2022, 656 patients, 970 CXRs). Inclusion criteria were COVID-positivity and the availability of CXR imaging exams, in general for patients not admitted to ICU and prior to ICU admission for those patients admitted to ICU as part of their treatment. Exclusion criteria were image acquisition in ICU or the presence of mechanical ventilation. Our image-based AI/ML model was trained to predict, based on each frontal CXR from a COVID-positive patient, whether this patient would be admitted to ICU within a 24, 48, 72, or 96-hour window. The model was evaluated 1) in a cross-sectional test when trained on a subset/tested on an independent subset of the Delta cohort, 2) similarly for the Omicron cohort, and 3) in a longitudinal test when trained on the Delta cohort/tested on the Omicron cohort. Cohorts were similar in ICU admission rate and fraction of portable CXRs, while immunization rate was higher for the Omicron cohort. The model did not demonstrate signs of aging with performances in the longitudinal test being very similar to those within the Delta cohort, e.g., an area under the ROC curve in the task of predicting ICU admission within 24 hours of 0.76 [0.68;0.84] when trained/tested within the Delta cohort and 0.77 [0.73;0.80] for the longitudinal test (p>0.05). The performance within the Omicron cohort was similar as well, at 0.76 [0.66;0.84]. Our AI/ML model for COVID-severity prediction did not demonstrate signs of aging in a longitudinal test when trained on the Delta cohort and applied as-is to the Omicron cohort. © COPYRIGHT SPIE. Downloading of the is permitted for personal use only.
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Purpose:We aimed to evaluate the levels of Burnout Syndrome (BS) in Agricultural Sciences students, both before and during the COVID-19 pandemic period.Design/methodology/approach:We accessed 77 students for Burnout Syndrome using the Maslach Burnout Inventory-Student Survey (MBI-SS) on two occasions, the first in February and the second in October 2020. Sixty-three students completed both phases. The data were analyzed in a mixed factorial scheme (Three-way ANOVA;p < 0.05).Findings:Academic efficacy improved over time without interference of sex or physical activity frequency (p < 0.001). The emotional exhaustion domain significantly reduced over time in women who declared to practice physical activity (p = 0.037). A similar effect was observed in both men and women for the cynicism domain (p < 0.001). Online teaching strategies and the regular practice of exercise were associated to reduced levels of BS during the pandemic.Practical implications:The adoption of the emergency remote education system (ERE) associated with the practice of exercise can mitigate the harmful effects of the COVID-19 quarantine on the mental health of students.Theoretical implications:The ERE can be an effective strategy to mitigate BS levels in Agricultural Science students in the post-pandemic period.Originality/Value:This is the first study that presents results of BS in students of Agricultural Sciences, comparing before and during the COVID-19 pandemic.
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How has the COVID-19 pandemic affected public attitudes toward immigration? Long-term evidence in Europe and the United States suggests attitudes to immigration are relatively stable and, in some cases, becoming more favorable with high volatility instead of the perceived importance of the issue. However, theoretically a global pandemic could exacerbate people's fears of outsiders or that migration may contribute to the disease. By contrast, attitudes could remain stable if their distal drivers prove to be robust enough to withstand the shock of COVID-19. We draw from Eurobarometer data from 2014 to 2021 across 28 European countries, weekly national survey data during the outbreak from the United States and individual panel data from the United Kingdom and Germany to find little systematic change in immigration preferences and no country-level correlation between the observed changes and the outbreak's severity. Instead, the perceived importance of immigration has consistently and significantly decreased. These findings suggest that, if COVID-19 is to have an impact on attitudes to migration, it is likely to emerge via longer-term means, such as early-life socialization and value change, rather than reactions to the immediate pandemic shock.
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Introduction: This study was done to compare the prevalence of mental health disorders between COVID-19-infected and non-infected mothers during the COVID-19 pandemic. The secondary objective was to find out the risk factors and long-term outcome of peripartum depression (PPD). Material(s) and Method(s): This was an observational and comparative study using a questionnaire-based direct interview, conducted in a tertiary hospital. After judging the inclusion and exclusion criteria, 842 subjects were selected between September 2020 to December 2020. The Edinburgh postnatal depression scale (EPDS) and COVID-19 anxiety scale (CAS) was used for evaluation of the mental health. Subjects with PPD were followed up for a year. Result(s): The mean age of the subjects was 24.8 +/- 3.9 years, 142 (16.8%) were confirmed COVID-19 positive. Overall, 317 (37.6%) had possible PPD (EPDS >=14) and 763 (90.6%) had peripartum anxiety (EPDS anxiety subscore >=4). While there was no significant difference in the prevalence of PPD (32.6% vs 39%, p = 0.12), peripartum anxiety was higher among COVID non-infected subjects (91.6% vs 86.6%, p = 0.04). Furthermore, COVID-19-related anxiety was higher among COVID-19-infected compared to the non-infected [17 (10-28) vs 15 (8-25), p = 0.00]. In multivariate analysis, medical comorbidities (p = 0.000), history of psychiatric illness (p = 0.002), domestic violence (p = 0.032) and obstetric complications (p = 0.000) were significant risk factors for PPD. Among the subjects who had PPD, only 35% still had depression after a year. Conclusion(s): This study provides an in-depth analysis of PPD and anxiety during the COVID-19 pandemic, the risk factors, and the long-term effects. Clinical significance: It highlights the importance of routine screening for perinatal mental health disorders and early psychiatric consultation when required.Copyright © The Author(s).
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Introduction: SARS-CoV-2 is responsible for the current global pandemic. SARS-CoV-2 infection underlies the novel viral condition coronavirus disease 2019 (COVID-19). COVID-19 causes significant pulmonary sequelae contributing to serious morbidities. The pathogenesis of COVID-19 is complex with a multitude of factors leading to varying levels of injury numerous extrapulmonary organs. This review of 124 published articles documenting COVID- 19 autopsies included 1,142 patients. Method(s): A PubMed search was conducted for COVID-19 autopsy reports published before March 2021 utilizing the query COVID-19 Autopsy. There was no restriction regarding age, sex, or ethnicity of the patients. Duplicate cases were excluded. Findings were listed by organ system from articles that met selection criteria. Result(s): Pulmonary pathology (72% of articles;866/1142 patients): diffuse alveolar damage (563/866), alveolar edema (251/866), hyaline membrane formation (234/866), type II pneumocyte hyperplasia (165/866), alveolar hemorrhage (164/866), and lymphocytic infiltrate (87/866). Vascular pathology (41% of articles;771/1142 patients): vascular thrombi (439/771)-microvascular predominance (294/439)-and inflammatory cell infiltrates (116/771). Cardiac pathology (41% of articles;502/1142 patients): cardiac inflammation (186/502), fibrosis (131/502), cardiomegaly (100/502), hypertrophy (100/502), and dilation (35/502). Hepatic pathology (33% of articles;407/1142 patients): steatosis (106/402) and congestion (102/402). Renal pathology (30% of articles;427/1142 patients): renal arteries arteriosclerosis (111/427), sepsis-associated acute kidney injury (81/427) and acute tubular necrosis (77/427). Conclusion(s): This review revealed anticipated pulmonary pathology, along with significant extrapulmonary involvement secondary to COVID-19, indicating widespread viral tropism throughout the human body. These diverse effects require additional comprehensive longitudinal studies to characterize short-term and long-term COVID-19 sequelae and inform COVID-19 treatment.
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Face is one of the most widely employed traits for person recognition, even in many large-scale applications. Despite technological advancements in face recognition systems, they still face obstacles caused by pose, expression, occlusion, and aging variations. Owing to the COVID-19 pandemic, contactless identity verification has become exceedingly vital. To constrain the pandemic, people have started using face mask. Recently, few studies have been conducted on the effect of face mask on adult face recognition systems. However, the impact of aging with face mask on child subject recognition has not been adequately explored. Thus, the main objective of this study is analyzing the child longitudinal impact together with face mask and other covariates on face recognition systems. Specifically, we performed a comparative investigation of three top performing publicly available face matchers and a post-COVID-19 commercial-off-The-shelf (COTS) system under child cross-Age verification and identification settings using our generated synthetic mask and no-mask samples. Furthermore, we investigated the longitudinal consequence of eyeglasses with mask and no-mask. The study exploited no-mask longitudinal child face dataset (i.e., extended Indian Child Longitudinal Face Dataset) that contains 26,258 face images of 7,473 subjects in the age group of [2, 18] over an average time span of 3.35 years. Due to the combined effects of face mask and face aging, the FaceNet, PFE, ArcFace, and COTS face verification system accuracies decrease by approximately , , , and , respectively. © 2022 ACM.
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Surgical plume poses a risk to perioperative nurses and the perioperative team as a whole, as well as the operative patient. Surgical plume contains various hazardous components which pose multiple health risks to the perioperative staff who are exposed to it. Further research is required in order to definitively understand the risks to perioperative staff from long-term exposure to surgical plume and to advance current policies and procedures. The current practice standard on surgical plume management from the Australian College of Perioperative Nurses (ACORN) sets out methods of reducing these risks. However, this standard's utility in practice and barriers to its implementation lead to ongoing unnecessary plume exposure. Through adhering to current practice standards and educating perioperative nurses, the risks posed by surgical plume can be mitigated. Thorough education on this topic will empower nurses to advocate for their safety and the safety of their patients, leading to the reduction of surgical plume exposure.
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This paper is based on the ReFashion study which used mixed‐method longitudinal research to track and amplify the experiences and coping mechanisms of 200 women garment workers in Cambodia as they navigated the financial repercussions of the COVID‐19 pandemic. It develops the idea and practice of ‘feminist longitudinal research' (FLR) through re‐centring the too often marginalised knowledges and ways of knowing of Cambodian researchers and research participants. Hearing and learning from their experiences reveal the labours and care‐work involved in the ‘doing' of longitudinal research during a time of extraordinary crisis, and the potential for feminist consciousness raising and solidarity that can arise both within and beyond the confines of an academic study. The paper advocates for geographers and other social scientists to go beyond technically‐framed issues of participant ‘attrition' and ‘retention' in longitudinal studies to think more creatively and critically about the process of longitudinal research and what it means for those taking part in it. FLR not only evidences the temporally contingent gendered impacts of a phenomenon, but can be distinguished by its intentionality and/or potential to challenge the patriarchal status quo, both in the lives of researchers and participants. [ FROM AUTHOR] Copyright of Area is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)
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Objectives: Online health boards (OHBs) are web-based forums where patients post publicly about their conditions. We evaluated the extent to which OHB posts could be used to generate meaningful insights into the lived experience of patients. Specifically, we sought to (a) capture patient reactions to the Covid-19 pandemic, (b) determine pathways to diagnosis of ANCA-associated vasculitis (AAV) and (c) develop clinical outcome assessments (COAs) for congestive heart failure (CHF). Method(s): For each use case, a keyword-based search was used to retrieve relevant English language posts from multiple OHBs. A machine learning approach removed all posts except those where a patient was writing about themselves or someone in their care. Computer-assisted coding was applied to these posts and numerical analysis used to extract insights from the coding. Where possible, our findings were compared to those obtained using traditional methods. Result(s): Relevant posts were obtained from 53,134 users for the Covid study, 271 patients for the CHF work and 59 AAV patients. These proved sufficient to reveal meaningful insights across all three studies. For example, it was possible to rank lifestyle impacts of disease (e.g. limitations on exercise ranked highest, cited by 47% of CHF patients), reconstruct pathways to diagnosis (average time to AAV diagnosis was found to be seven years) and track patient concerns during the onset of the Covid-19 pandemic. Findings were broadly comparable with those reported elsewhere. Conclusion(s): Mining OHBs offers an alternative methodology for capturing the patient experience across a range of applications. Its strengths are the immediacy with which insights can be acquired, the size of cohorts that can be studied and the ability to retrospectively perform longitudinal studies. However, this approach is limited by the inability to probe beyond initial post content, the reliance on patients to proactively share their experience, and the inability to evidence their diagnosis.Copyright © 2023
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Background Triple-negative breast cancer (TNBC) accounts for ~15% of breast cancer diagnoses but is linked to worse outcomes and comprises a disproportionate number of breast cancer deaths. The TNBC pilot study is a prospective longitudinal study to provide a critical resource for understanding TNBC disease. However, the pandemic impacted the collection of samples. Objective To highlight the impacts of COVID-19 on this longitudinal cancer translational research study including the patient's perspective and to develop recommendations to avoid future disruptions. Methods 389 participants were enrolled in the prospective longitudinal cohort, which collected serial blood samples for up to 5 years. Due to the pandemic, research was curtailed for 6 months due to concerns about patient safety, halting the collection of blood samples. Missed samples and data gaps were documented. To complement this, we initiated a survey capturing the patient perspective on their experience of the study disruption due to COVID. Results 217 enrolled participants missed a blood draw or had a collection outside the study window. 158 patients missed 1 time-point collection, and 59 patients missed >= 2 collections. Of the 217 participants who missed a collection, 6 disease recurrence diagnoses and 3 deaths occurred during research curtailment. The collection of survey responses from participants is ongoing and will be presented at the AACR Annual Meeting. Conclusion Missed samples resulted in irreplaceable data gaps critical to monitoring patient outcomes, and reduced cohort sampling during the pandemic. Our current knowledge of the risks suggests that with proper informed consent, collections could have continued. To mitigate disruption in future clinical studies, clear plans should be part of study design to provide continuity. The participants' experience to be reported will also help researchers understand their issues and help develop policies. (Table Presented).