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Estimated annual direct medical costs of manifestations among patients with activated phosphoinositide 3-kinase delta syndrome
Activated phosphoinositide 3-kinase delta syndrome (APDS) is a rare genetic disease associated with heterogeneous manifestations, including recurrent infections, lymphoproliferation, and autoimmunity. This analysis sought to estimate the mean annual direct medical costs of manifestations associated with APDS. A burden-of-illness cost calculator was developed based on survey responses from the US clinical experts, published evidence, and the US cost sources (2023). Results from the survey provided estimates of mean annual prevalence of various manifestations associated with APDS and the mean number of times patients experienced recurrent manifestations in a year. In the base case analysis, the annual mean cost of manifestations associated with APDS per patient in the US was estimated to be 10,711–$417,455) with gastrointestinal-, infection-, and hematology-related manifestations being the largest contributing factors. The weighted average scenario analysis resulted in similar estimates of mean annual manifestation costs as the base case analysis. To our knowledge, our study is the first to provide estimates of annual prevalence of manifestations associated with APDS and to estimate the annual direct medical costs for patients with APDS in the US. The high mean annual cost associated with APDS contributes to the economic burden of patients and health care payers. Patients with APDS often require off-label, symptomatic treatments for various manifestations that do not target the root cause of the disorder. These treatments are associated with high costs that may not control symptoms. This analysis provides valuable support for discussions about resource utilization and the economic burden of APDS
The Identity of Caloplaca quercicola
Material of Caloplaca quercicola, including types, was examined and found to belong to Ramboldia russula. The new synonymy is presented here
“The Technology We’ve Been Forced to Use”: Impact of Online Service Delivery for Kinship Families During the COVID-19 Pandemic
PURPOSE: The COVID-19 pandemic rapidly changed the service landscape for both professionals and families. Kinship families, who often navigate multiple systems concurrently with higher service needs, were among the most vulnerable. This study explores kinship caregivers' and child welfare professionals' perceptions of changes in service delivery during the pandemic, specifically the sudden shift to virtual platforms. MATERIALS AND METHODS: To understand participants' experiences, focus groups with protocols shaped by initial Delphi Rounds were implemented with 25 kinship caregivers and 34 child welfare professionals from a national sample. RESULTS: Caregiver and professionals shared themes related to how COVID-19 precautions impacted service delivery; kinship families' access to, knowledge, and use of technology; and benefits and challenges for implementing virtual support. DISCUSSION: Based on findings shared by participants, a model illustrating influencing factors for online service delivery was created highlighting technological capital, client factors, provider factors, and service type as key components. Implications of implementing online supports in practice are discussed, including technology access, training in social work education, and future research areas. CONCLUSION: Despite the many adversities the COVID-19 pandemic presented for professionals and kinship families, this unprecedented time also paved the way for us think differently about service accessibility and the benefits and challenges of online supports, especially in a world that is quickly moving toward automation. Considering both families' and professionals' perspectives is key to integrating virtual supports into the current service delivery landscape in equitable and effective ways
Being in postmenopause may be associated with lower prevalence of COVID-19 symptoms among women over 45 years of age with and without HIV.
OBJECTIVE: Menopause is associated with COVID-19 severity among women without HIV (WWoH). Yet, little is known about menopause and COVID-19 among women with HIV (WWH). METHODS: We conducted a cross-sectional analysis of survey data collected in 2020-2022 from WWH and WWoH over 45 years of age enrolled in the Multicenter AIDS Cohort Study/Women's Interagency HIV Study Combined Cohort Study. Women were categorized as premenopausal (no report of menstrual irregularities), perimenopausal (menstruating, with irregularities or self-reported menopause), or postmenopausal (amenorrhea for at least 1 year). Women who reported a positive COVID-19 test in any setting were asked about COVID-19 symptoms. COVID-19 symptoms during the most recent confirmed infection were compared across HIV status and menopause stage. RESULTS: Among 1,244 eligible women (70% WWH), 15% were premenopausal, 9% were perimenopausal, and 76% were postmenopausal. Among 112 women with a prior positive COVID-19 test, HIV status was not associated with COVID-19 symptoms. We combined women across HIV status and compared symptoms during premenopause/perimenopause versus postmenopause. Having any COVID-19 symptom was more common among women in premenopause/perimenopause (89%) than in postmenopause (70%). Compared with women in postmenopause, women in premenopause/perimenopause had higher odds of reporting muscle aches, fatigue, and loss of smell/taste after controlling for HIV, age, race, and ethnicity. When examining premenopause and perimenopause separately and when using alternative criteria to define menopause stage in sensitivity analyses, aches, fatigue, and loss of smell/taste remained least common in postmenopause. CONCLUSIONS: COVID-19 symptoms may be least prevalent in postmenopause and may overlap with menopause symptoms in WWH and WWoH
Keeping the "R" in LARC (long-acting reversible contraception): Measuring client-centered implant removal services in sub-Saharan Africa.
As the use of subdermal contraceptive implants increases across sub-Saharan Africa, the need for person-centered removal services is more critical than ever to safeguard reproductive autonomy. In 2016, Christofield and Lacoste proposed eight conditions for client-centered implant removal, yet the extent to which these conditions have been assessed in large-scale surveys remains unexamined. Our mapping exercise collates survey information from three large data collection platforms fielded in sub-Saharan Africa, including the Demographic and Health Surveys (DHS), Performance Monitoring for Action (PMA), and the Service Availability and Readiness Assessment (SARA), utilizing questionnaire tools implemented among women, health facilities, providers, and clients to map existing data sources against these conditions. Our findings reveal that four of the eight conditions are fully captured, three are partially captured, and one is entirely absent within current population or facility-based surveys. Specifically, among the six facility-based conditions: the three conditions completely captured include the availability of supplies (condition 2), systems for managing difficult removals (condition 3), and the provision of counseling and reinsertion options (condition 5); two conditions partially captured include competent and confident providers (condition 1) and affordability for clients (condition 7), and the one condition that remained absent was measurement systems for monitoring of removal data (condition 8). Among the two individual-level conditions, timely and proximate service (condition 4) was partially captured and knowledge and awareness of where to go for removal (condition 6) was fully captured. Nearly a decade after Christofield and Lacoste proposed these client-centered conditions, the lack of consistent measures for client-centered implant removal poses significant barriers to understanding service accessibility and women's reproductive experiences. To protect the reproductive autonomy of individuals who use long-acting reversible contraceptive (LARC) methods and desire timely discontinuation, it is imperative to develop and implement standardized metrics for their removal
FROM HARM TO HEALING: COMMUNITY-ROOTED STRATEGIES TO SUPPORT FAMILIES IMPACTED BY SUBSTANCE USE IN GRANVILLE AND VANCE COUNTIES, NORTH CAROLINA
This proposal addresses the County Commissioners’ request for upstream strategies to improve community health in Granville and Vance Counties, North Carolina, targeting the Social and Community Context domain of Social Determinants of Health, which includes social cohesion, community support, and family dynamics. It focuses on the impact of parental or caregiver substance use on adolescents aged 13–17, proposing the Social Roots Initiative to implement equitable, trauma-informed interventions to mitigate adverse childhood experiences (ACEs) and health disparities. Using health data and resource mapping, it identifies service gaps and recommends three policies: amending the 1115 Medicaid Waiver for youth behavioral health, establishing Youth Recovery Navigators, and creating Family Resilience Advisory Councils. Led by a 25-member Steering Committee, the initiative emphasizes inclusive leadership, data-driven evaluation, and community engagement to break trauma cycles, aiming for integrated care by 2026, expanded school-based mental health by 2027, and sustainable health improvements by 2030.Master of Public Healt
Reporting guideline for Chatbot Health Advice studies: the CHART statement
Background The Chatbot Assessment Reporting Tool (CHART) is a reporting guideline developed to provide reporting recommendations for studies evaluating the performance of generative artificial intelligence (AI)-driven chatbots when summarizing clinical evidence and providing health advice, referred to as Chatbot Health Advice (CHA) studies. Methods CHART was developed in several phases after performing a comprehensive systematic review to identify variation in the conduct, reporting, and methodology in CHA studies. Findings from the review were used to develop a draft checklist that was revised through an international, multidisciplinary modified asynchronous Delphi consensus process of 531 stakeholders, three synchronous panel consensus meetings of 48 stakeholders, and subsequent pilot testing of the checklist. Results CHART includes 12 items and 39 subitems to promote transparent and comprehensive reporting of CHA studies. These include Title (subitem 1a), Abstract/Summary (subitem 1b), Background (subitems 2ab), Model Identifiers (subitems 3ab), Model Details (subitems 4abc), Prompt Engineering (subitems 5ab), Query Strategy (subitems 6abcd), Performance Evaluation (subitems 7ab), Sample Size (subitem 8), Data Analysis (subitem 9a), Results (subitems 10abc), Discussion (subitems 11abc), Disclosures (subitem 12a), Funding (subitem 12b), Ethics (subitem 12c), Protocol (subitem 12d), and Data Availability (subitem 12e). Conclusion The CHART checklist and corresponding methodological diagram were designed to support key stakeholders including clinicians, researchers, editors, peer reviewers, and readers in reporting, understanding, and interpreting the findings of CHA studies
From Sontaku To Transparency: A Comparative Analysis Of Media Coverage, Cultural Dynamics, And Accountability In The Sexual Abuse Scandals Of Johnny Kitagawa And Harvey Weinstein
This thesis examined the cultural underpinnings of media coverage and accountability in high-profile sexual abuse scandals, comparing the cases of Johnny Kitagawa in Japan and Harvey Weinstein in the United States. By analyzing the concept of sontaku (Wikipedia, https://en.wikipedia.org/wiki/Sontaku) —a cultural practice of anticipating and fulfilling the unspoken expectations of those in power—it explored how this dynamic contributed to Japanese media’s reluctance to report on Kitagawa’s abuses (see Appendix C). In contrast, the Weinstein scandal underscored the role of investigative journalism in the United States, which exposed misconduct, galvanized the #MeToo movement (Carlsen et al., 2018), and promoted transparency and accountability. Through a comparative case study approach, the research investigated how each scandal began, the societal reactions, and the differences in media practices shaped by cultural norms. Findings highlight significant contrasts in the media’s role in holding powerful figures accountable, emphasizing the need for ethical journalism and transparency to support victims and foster societal change. The study concludes with recommendations for increased cultural awareness and ethical media practices to prevent future abuses. As a forward-looking solution, it calls for reexamining reporting standards in emerging cases such as Sean Combs’s allegations (U.S. Attorney’s Office, 2024), advocating for a balanced and ethical approach that prioritizes justice while addressing the complexities of power dynamics and public influence. These insights aim to guide journalists, advocates, and policymakers in shaping a media environment that promotes accountability and transparency across cultures.Master of Arts in Digital Communicatio
Augmenting the Abilities of a Programmer Through Visualization-Driven Robotics Development
Robotics development is a challenging process that requires an understanding of how computers, robots, and the physical world interact. The success of this process depends on a programmer’s ability to mentally conceptualize the numerous potential states of a robotic system. Each additional variable, data stream, or environmental factor multiplies the possible states, leading to a combinatorial explosion of states that can quickly become unmanageable. To address this, the robotics community has developed data visualization tools that help programmers see system states rather than reconstruct them mentally. Although these tools are now integral to the development workflow, visualization tools have not kept pace with the rapid advances in robotics systems. As a result, the development process remains complex and error-prone. This dissertation explores how to design effective robotics data visualization tools, how to integrate them seamlessly into the development process, and how they can improve our ability to build robotics systems. I introduce a visualization-driven robotics development (VDRD) approach, which advocates for tightly integrating data visualizations into the development workflow. I examine this concept through four studies: the first two investigate the impact of visualization tools on traditional development practices, while the latter two evaluate how applying synthesized design guidelines can enhance VDRD in both current and emerging robotics workflows. Ultimately, this research provides a foundation for building tools that augment our ability to understand and develop robotics systems more effectively.Doctor of Philosoph
Towards Robust 3D Reconstruction from Colonoscopy Video
Optical colonoscopy is the gold-standard method for colorectal cancer prevention and early detection but is highly dependent upon surveying the entire colon surface. In order to improve the efficacy of colonoscopy as a cancer screening procedure, real-time 3D reconstruction solves the inverse problem of finding un-surveyed surface areas by visualizing what has been seen and leaving holes where there are blind spots. The colonoscopic environment presents several major challenges for 3D reconstruction, particularly impacting the performance of deep neural networks for monocular depth estimation and the establishment of keypoint correspondence across video frames. The co-located camera and light source subverts the assumption of consistent surface appearance across frames as any motion of the camera compels the same motion of the light source. The complex surface reflectance of the colon tissue and mucus layer fails to be explicitly modeled by pre-existing synthetic datasets, inhibiting the clinical performance of deep neural networks trained on synthetic data. Finally, the feature-sparse colon environment requires subtle but precise keypoint correspondence to form the foundation of 3D reconstruction. This dissertation addresses each of these problems to improve the overall robustness of 3D reconstruction from optical colonoscopy video recordings. Near-field photometric stereo explicitly models the co-located camera and light source. Leveraging (rather than being hindered by) the strong relationship between pixel intensity and depth in the context of an explicit light field model, I introduce a system for iterative depth map refinement for colonoscopic applications. To close the domain gap between synthetic and clinical data, I introduce a structure-preserving loss to image translation to enable "repainting" of synthetic images to appear more realistic for training while retaining their structural depth information. Finally, I introduce a novel method of combining sparse and dense correspondences to improve robustness in the feature-sparse colonoscopic environment. For the first time, a pipeline for piecewise reconstruction of full clinical colonoscopy recordings is introduced and its robustness against noise characteristic of colonoscopy video is demonstrated. This system is also the first to perform reconstructions from all camera viewpoint categories. This work enables future investigation into improving the colonoscopy procedure for better patient outcomes and reduced medical costs.Doctor of Philosoph