13 research outputs found

    PCSK6 and Survival in Idiopathic Pulmonary Fibrosis

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    Rationale: Idiopathic pulmonary fibrosis (IPF) is a devastating disease characterized by limited treatment options and high mortality. A better understanding of the molecular drivers of IPF progression is needed. Objectives: To identify and validate molecular determinants of IPF survival. Methods: A staged genome-wide association study was performed using paired genomic and survival data. Stage I cases were drawn from centers across the United States and Europe and stage II cases from Vanderbilt University. Cox proportional hazards regression was used to identify gene variants associated with differential transplantation-free survival (TFS). Stage I variants with nominal significance (P < 5 x 10(-5)) were advanced for stage II testing and meta-analyzed to identify those reaching genome-wide significance (P < 5 x 10(-8)). Downstream analyses were performed for genes and proteins associated with variants reaching genome-wide significance. Measurements and Main Results: After quality controls, 1,481 stage I cases and 397 stage II cases were included in the analysis. After filtering, 9,075,629 variants were tested in stage I, with 158 meeting advancement criteria. Four variants associated with TFS with consistent effect direction were identified in stage II, including one in an intron of PCSK6 (proprotein convertase subtilisin/kexin type 6) reaching genome-wide significance (hazard ratio, 4.11 [95% confidence interval, 2.54-6.67]; P = 9.45 x 10(-9)). PCSK6 protein was highly expressed in IPF lung parenchyma. PCSK6 lung staining intensity, peripheral blood gene expression, and plasma concentration were associated with reduced TFS. Conclusions: We identified four novel variants associated with IPF survival, including one in PCSK6 that reached genome-wide significance. Downstream analyses suggested that PCSK6 protein plays a potentially important role in IPF progression

    Older adults' experience with virtual conversational agents for health data collection

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    IntroductionVirtual conversational agents (i.e., chatbots) are an intuitive form of data collection. Understanding older adults' experiences with chatbots could help identify their usability needs. This quality improvement study evaluated older adults' experiences with a chatbot for health data collection. A secondary goal was to understand how perceptions differed based on length of chatbot forms.MethodsAfter a demographic survey, participants (≥60 years) completed either a short (21 questions), moderate (30 questions), or long (66 questions) chatbot form. Perceived ease-of-use, usefulness, usability, likelihood to recommend, and cognitive load were measured post-test. Qualitative and quantitative analyses were used.ResultsA total of 260 participants reported on usability and satisfaction metrics including perceived ease-of-use (5.8/7), usefulness (4.7/7), usability (5.4/7), and likelihood to recommend (Net Promoter Score = 0). Cognitive load (12.3/100) was low. There was a statistically significant difference in perceived usefulness between groups, with a significantly higher mean perceived usefulness for Group 1 than Group 3. No other group differences were observed. The chatbot was perceived as quick, easy, and pleasant with concerns about technical issues, privacy, and security. Participants provided suggestions to enhance progress tracking, edit responses, improve readability, and have options to ask questions.DiscussionOlder adults found the chatbot to be easy, useful, and usable. The chatbot required low cognitive load demonstrating it could be an enjoyable health data collection tool for older adults. These results will inform the development of a health data collection chatbot technology

    Acceptability of Telemedicine Features to Promote Its Uptake in Practice: A Survey of Community Telemental Health Providers

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    Understanding what motivates mental health providers to use telemedicine (i.e., telemental health) is critical for optimizing its uptake, especially during unprecedented times (e.g., the COVID-19 pandemic). Drawing from the Technology Acceptance Model (TAM), this report examined the characteristics of telemental health providers and how the acceptability of telemedicine features contributes to their intention to use the technology more often in practice. Telemental health providers (N = 177) completed an online survey between March and May 2019. Most providers (75%) spent less than 25% of their work-week using telemedicine, but 70% reported an intention to use telemedicine more in the future. The belief that telemedicine affords greater access to patients, work-life balance, flexibility in providing care, and the opportunity to be at the forefront of innovative care were significant predictors of intentions to use the technology more in the future. Other significant predictors included needing assistance to coordinate insurance reimbursements, manage a successful telemedicine practice, and integrate the telemedicine program with other health IT software. Findings have important implications for increasing the frequency of telemedicine use among telemental health providers. Future research and practice should leverage providers&rsquo; positive beliefs about telemedicine acceptability and consider their needs to enhance its uptake

    Providers’ Perspectives on Telemental Health Usage After the COVID-19 Pandemic: Retrospective Analysis

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    BackgroundMental health care pivoted to telemedicine during the COVID-19 pandemic, and there is uncertainty around the sustainability of this rapid shift. ObjectiveThis study examined how intentions to continue using telemedicine after the COVID-19 pandemic are influenced by provider perceptions of usefulness, ease of use, and professional social influence, facilitating organizational conditions. MethodsWe conducted a web-based, cross-sectional survey of 369 telemental health providers between February and March 2021. A hierarchical linear regression analysis was conducted to predict intentions to continue using telemedicine after the COVID-19 pandemic. ResultsMost providers began using telemedicine in March 2020 or later (257/369, 69.6%) and attended to ≥50% of their clients via telemedicine (299/369, 81.0%). Intention to continue using telemedicine after the COVID-19 pandemic was predicted by the telemedicine caseload (β=.10; P=.005), perceived usefulness in general (β=.10; P=.008), ease of use (β=.08; P=.04), social influence (β=.68; P<.001), and facilitating conditions (β=.08; P=.047). ConclusionsExploration of the predictors of telemedicine usage beyond the COVID-19 pandemic aids in surveillance of telemedicine usage, integration with future clinic workflows, and the shaping of public policy. It is important to consider telemedicine services as not only a response to a crisis but also an effective and useful solution for everyday life. Our results suggest widespread, sustainable telemedicine adoption

    Narrative review of telemedicine applications in decentralized research

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    Telemedicine enables critical human communication and interaction between researchers and participants in decentralized research studies. There is a need to better understand the overall scope of telemedicine applications in clinical research as the basis for further research. This narrative, nonsystematic review of the literature sought to review and discuss applications of telemedicine, in the form of synchronous videoconferencing, in clinical research. We searched PubMed to identify relevant literature published between January 1, 2013, and June 30, 2023. Two independent screeners assessed titles and abstracts for inclusion, followed by single-reviewer full-text screening, and we organized the literature into core themes through consensus discussion. We screened 1044 publications for inclusion. Forty-eight publications met our inclusion and exclusion criteria. We identified six core themes to serve as the structure for the narrative review: infrastructure and training, recruitment, informed consent, assessment, monitoring, and engagement. Telemedicine applications span all stages of clinical research from initial planning and recruitment to informed consent and data collection. While the evidence base for using telemedicine in clinical research is not well-developed, existing evidence suggests that telemedicine is a potentially powerful tool in clinical research

    Communicating about online health information with patients: Exploring determinants among telemental health providers

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    Objective: To investigate determinants of telemental health (TMH) providers' openness to discuss and confidence to use online mental health information with patients, focusing on providers' eHealth literacy and perceived usefulness of online MH information. Methods: TMH providers (N = 472) completed a web-based survey with questions about discussing and using online health information with patients, perceived usefulness of the Internet as a source of patient information, and eHealth literacy. Results: Providers were open to discussing online health information with patients if they were not treating substance abuse disorders (b = −0.83), felt the Internet was a useful resource (b = 0.18), and felt confident in their skills to evaluate the online information (b = 0.21). Providers were confident using online health information if they worked in a small clinic (b = 0.37), felt the Internet was a useful resource (b = 0.31), knew where to access relevant online health information (b = 0.13), and had skills to help their patients find (b = 0.17) and evaluate (b = 0.54) online information. Conclusion: TMH providers are likely to use online health information resources if they know where and how to find them and perceive the Internet as a useful resource. Innovation: To effectively discuss online health information with patients, providers require skills to evaluate the information with patients

    Assessing the impact of COVID-19 on mental health providers in the southeastern United States.

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    The COVID-19 pandemic has increased the need for mental health care despite novel barriers to services. Little is known about how the pandemic has affected mental health providers and their practice. In July 2020, we conducted a web-based survey of 500 licensed mental health providers to assess their employment and caseloads, logistics of care, quality of care, and patient-provider relationships and communication during the pandemic. Over 90% of providers reported changes to their employment (e.g., furloughs), with 64% no longer practicing. Providers who reported no longer practicing were older in age, racial minorities, served rural communities, worked in small clinics/provider networks, were social workers and marriage and family therapists, and relied on private insurance or out-of-pocket payment. Most practicing providers reported similar-to-increased caseloads (62%), new patients seeking services (67%), and appointment frequency (70%). Approximately 97% of providers used telemedicine, with 54% providing services mostly-to-exclusively via telemedicine. Most providers reported losing contact with patients deemed unstable (76%) or a danger to themselves/others (71%). Most providers reported maintained-to-improved quality of care (83%), patient-provider relationships (80%), and communication (80%). Results highlight concerns relating to mental health services during the pandemic, however practicing providers have demonstrated resilience to coordinate and provide high quality care

    Consensus Guidelines for Teledermatology: Scoping Review

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    BackgroundConsensus guidelines and recommendations play an important role in fostering quality, safety, and best practices, as they represent an expert interpretation of the biomedical literature and its application to practice. However, it is unclear whether the recent collective experience of implementing telemedicine and the concurrent growth in the evidence base for teledermatology have resulted in more robust guidance. ObjectiveThe objective of this review was to describe the extent and nature of currently available guidance, defined as consensus guidelines and recommendations available for telemedicine in dermatology, with guidance defined as consensus or evidence-based guidelines, protocols, or recommendations. MethodsWe conducted a single-reviewer scoping review of the literature to assess the extent and nature of available guidance, consensus guidelines, or recommendations related to teledermatology. We limited the review to published material in English since 2013, reflecting approximately the past 10 years. We conducted the review in November and December of the year 2022. ResultsWe identified 839 potentially eligible publications, with 9 additional records identified through organizational websites. A total of 15 publications met the inclusion and exclusion criteria. The guidelines focused on varied topics and populations about dermatology and skin diseases. However, the most frequent focus was general dermatology (8/15, 53%). Approximately half of the telemedicine guidance described in the publications was specific to dermatology practice in the context of the COVID-19 pandemic. The publications were largely published in or after the year 2020 (13/15, 87%). Geographical origin spanned several different nations, including Australia, the United States, European countries, and India. ConclusionsWe found an increase in COVID-19–specific teledermatology guidance during 2020, in addition to general teledermatology guidance during the period of the study. Primary sources of general teledermatology guidance reported in the biomedical literature are the University of Queensland’s Centre for Online Health and Australasian College of Dermatologists E-Health Committee, and the American Telemedicine Association. There is strong evidence of international engagement and interest. Despite the recent increase in research reports related to telemedicine, there is a relative lack of new guidance based on COVID-19 lessons and innovations. There is a need to review recent evidence and update existing recommendations. Additionally, there is a need for guidance that addresses emerging technologies

    User Preferences and Needs for Health Data Collection Using Research Electronic Data Capture: Survey Study

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    BackgroundSelf-administered web-based questionnaires are widely used to collect health data from patients and clinical research participants. REDCap (Research Electronic Data Capture; Vanderbilt University) is a global, secure web application for building and managing electronic data capture. Unfortunately, stakeholder needs and preferences of electronic data collection via REDCap have rarely been studied. ObjectiveThis study aims to survey REDCap researchers and administrators to assess their experience with REDCap, especially their perspectives on the advantages, challenges, and suggestions for the enhancement of REDCap as a data collection tool. MethodsWe conducted a web-based survey with representatives of REDCap member organizations in the United States. The survey captured information on respondent demographics, quality of patient-reported data collected via REDCap, patient experience of data collection with REDCap, and open-ended questions focusing on the advantages, challenges, and suggestions to enhance REDCap’s data collection experience. Descriptive and inferential analysis measures were used to analyze quantitative data. Thematic analysis was used to analyze open-ended responses focusing on the advantages, disadvantages, and enhancements in data collection experience. ResultsA total of 207 respondents completed the survey. Respondents strongly agreed or agreed that the data collected via REDCap are accurate (188/207, 90.8%), reliable (182/207, 87.9%), and complete (166/207, 80.2%). More than half of respondents strongly agreed or agreed that patients find REDCap easy to use (165/207, 79.7%), could successfully complete tasks without help (151/207, 72.9%), and could do so in a timely manner (163/207, 78.7%). Thematic analysis of open-ended responses yielded 8 major themes: survey development, user experience, survey distribution, survey results, training and support, technology, security, and platform features. The user experience category included more than half of the advantage codes (307/594, 51.7% of codes); meanwhile, respondents reported higher challenges in survey development (169/516, 32.8% of codes), also suggesting the highest enhancement suggestions for the category (162/439, 36.9% of codes). ConclusionsRespondents indicated that REDCap is a valued, low-cost, secure resource for clinical research data collection. REDCap’s data collection experience was generally positive among clinical research and care staff members and patients. However, with the advancements in data collection technologies and the availability of modern, intuitive, and mobile-friendly data collection interfaces, there is a critical opportunity to enhance the REDCap experience to meet the needs of researchers and patients
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