Search Results (111)

Background: Virtual reality (VR) is a promising technology for the relief of physical and psychosocial burdens. We found that individualised VR videos were well tolerated and accepted and seemed to have a stronger effect on well-being and emotional connection than standardised VR in cancer inpatients under palliative care. For implementation, it is important to actively involve patients, as their input helps to ensure that the VR intervention meets their needs, thus making it more likely to be accepted and effective in practice, while balancing the needs of healthcare professionals. Aim: Exploration of patients’ and healthcare professionals’ perspectives on best practice VR intervention implementation. Design: Workshop-based 360° focus group using a strengths–weaknesses–opportunities–threats (SWOT) model and deductive/inductive qualitative analysis with a ‘framework’ approach. Setting/participants: The focus group took place at the National Centre for Tumour Therapy of a German university hospital. Participants were a local doctor (1) and nurses (3) with VR experience, the cooperating patient advisory board of the study (2), and members of a regional self-help group (3). Results: Eighteen subthemes were identified in the SWOT model. While there was agreement on the ‘strength of distraction’ and ‘opportunities of individualised VR’, concerns remained regarding data protection when using private VR content. There was an argument about gatekeeping by relatives worried about mental distress in patients immersing in home or family VR scenes. In contrast, many ideas were discussed regarding how to overcome rejectionist staff attitudes. However, the high organisational time and staff deployment were addressed as major weaknesses. Conclusions: Involving patient stakeholders and healthcare professionals in the planning of the implementation strategy revealed several issues that require attention. In particular, information needs to be provided not only to patients but also to relatives and hospital staff, alongside ensuring data protection and adequate staffing. Trial registration: Registered at German Clinical Trials Register (Deutsches Register Klinischer Studien; DRKS); registration number: DRKS00032172; registration date: 11 July 2023. Full article

Despite a large number of African-born individuals residing in the United States, there is a significant disparity in how this community accesses and utilizes mental health treatment. Low screening rates for common mental health concerns is one crucial part of ongoing inequities in mental healthcare access. Willingness to engage in screening is negatively impacted by a lack of culturally responsive ways to make screening more acceptable and stigma with mental health. This study therefore aimed to examine the perceived acceptability and utility of community-developed patient vignettes created to increase willingness to be screened for common mental health concerns. Employing a qualitative approach, a community advisory board (CAB) (n = 5) was enlisted to co-develop vignettes outlining an African community member’s symptoms of anxiety and subsequent help-seeking behavior. Two focus groups of community members (n = 18) provided qualitative feedback on the vignettes and shared their general attitudes towards mental health and recommendations for mental health screening and treatment in the African community. Using a hybrid inductive and deductive qualitative descriptive approach and classifying responses based on the socioecological model, four major themes emerged from the data: (1) between support and strain: the role of family; (2) reducing stigma: community voices as education; (3) culture as a barrier and a bridge; and (4) the importance of stories that reflect lived experience. Overall, participants were receptive to the culturally-responsive mental health vignettes and provided fruitful suggestions for how these stories can be used to reduce stigma and increase willingness to seek screening and treatment in African-born residents of the United States. Full article

2S/LGBTQIA+ survivors of intimate partner violence (IPV) face multiple, intersecting barriers to accessing care, yet little is known about how these barriers are shaped by IPV-caused brain injury (IPV-BI). Background/Objectives: This study aimed to explore how stigma and institutional trust influence 2S/LGBTQIA+ survivors’ experiences of help-seeking following IPV-BI. Guided by a Community Advisory Board, four semi-structured focus groups were conducted with 29 2S/LGBTQIA+ IPV-BI survivors. Methods: Reflexive thematic analysis was used to examine participants’ help-seeking accounts, with attention to minority stress and intersecting stigmas related to IPV, BI, and 2S/LGBTQIA+ identity. Results: The findings indicate that survivors navigated compounded stigmas that limited access to safe, affirming services and heightened vulnerability during help-seeking. Institutional trust was central to participants’ decisions to disclose sensitive information and engage in care, with confidentiality emerging as a critical determinant of perceived safety. Participants described negotiating disclosure, anticipating discrimination, and avoiding services when systems were perceived as unsafe or unresponsive. Conclusions: These findings highlight the need for service systems to integrate IPV-BI into screening and support protocols, provide training on the intersections of IPV, BI, and 2S/LGBTQIA+ identities, and centre confidentiality as a condition for trust and access, ultimately fostering safer, more responsive systems of care. Full article

Feline infectious peritonitis (FIP) is a disease arising as a result of feline coronavirus infection. It used to be regarded a fatal disease, with euthanasia commonly recommended following diagnosis due to its very poor prognosis. The availability of effective antiviral therapies, particularly nucleoside analogues such as oral GS-441524, has fundamentally changed the outlook for cats with FIP. FIP is now a treatable and frequently curable disease. In these revised guidelines, the European Advisory Board on Cat Diseases (ABCD) presents an update on the treatment of FIP, incorporating the findings of new studies including the range of available treatments (such as GS-441524, remdesivir and molnupiravir (EIDD-2801) and its active metabolite EIDD-1931), which varies globally, as well as suggestions for monitoring and prognostic indicators. Tables are used to present easy-to-find information on antiviral and supportive treatments for cats with FIP. GS-441524 is the most extensively studied antiviral for FIP with treatment success rates often exceeding 90%. Remdesivir is primarily reserved as an injectable antiviral for severely affected cats unable to tolerate oral medication; it is usually replaced by oral medication as soon as, and when, possible. Although 84-day treatment courses have historically been used, emerging evidence suggests that shorter regimens of 42 days can be equally effective. Full article

This study describes participants’ views and insights into crafting effective communication aimed at smokeless tobacco and nicotine pouch prevention among fire academy trainees and new recruits. Firefighters have elevated rates of smokeless tobacco use compared with the general population. Nicotine pouches have also gained popularity among this occupational group. We launched a pilot project centered in rural Northern California counties to uncover factors that can be used to communicate smokeless tobacco and nicotine pouch prevention messages within the firefighter workplace. As a first step, we conducted semi-structured interviews with firefighter subject matter experts, including fire chiefs, fire academy instructors, wildlands firefighters, and recent fire academy graduates. This purposive sample (n = 13) was obtained through referrals from the project’s Community Advisory Board, composed of fire service professionals. Interviews were audio recorded and transcribed. Next, the qualitative interviews were thematically analyzed. The results focus on two aspects of effective workplace communication in the service to delivery of smokeless tobacco and nicotine pouch prevention messages: content (core information conveyed in a message), and format (how the message is transmitted or displayed). Examples of the former are the importance of keeping oneself healthy so that one can do one’s job; do not risk a future compensation claim due to smokeless tobacco or nicotine pouch use. Examples of the latter are the use of brevity; humor. Because firefighters often initiate use of these products after they join the fire service, communicating prevention messages in the workplace during the firefighter training and recruitment stage may help disrupt the uptake of nicotine products. Full article

This study proposes Advisory Board Reinforcement Learning (AdvB-RL), a cooperative reinforcement-learning framework that integrates multiple advisory neural networks to guide policy optimization. Unlike conventional single-agent architectures, AdvB-RL maintains a set of independently trained advisory networks that contribute to action selection through a dynamic aggregation mechanism. This design preserves diverse experiential knowledge while improving learning stability and the exploration–exploitation balance. The framework is evaluated on three benchmark control tasks, namely LunarLander-v2, CartPole-v1, and MountainCar-v0, using advisory board sizes of 1, 5, and 10 members against a Double Deep Q-Network (DDQN) baseline. The best-performing configuration, 10 AdvB, achieved 270.02 ± 24.74 on LunarLander-v2 versus 227.92 ± 86.02 for DDQN, 497.79 ± 5.18 on CartPole-v1 versus 304.37 ± 144.04, and −103.16 ± 15.46 on MountainCar-v0 versus −130.71 ± 31.64, indicating higher returns together with markedly lower variability. Across the three environments, these results show that increasing the number of advisory members improves both reward consistency and overall robustness, with the 10-member setting providing the strongest performance. Within the tested configurations, the advisory board mechanism remains computationally feasible, while preliminary experiments beyond 10 advisors show diminishing returns relative to added complexity. Overall, AdvB-RL provides a robust and modular alternative to single-policy reinforcement learning for adaptive cooperative control. Full article

Background: Breast cancer is one of the most common cancers worldwide, with both the disease and the treatments affecting patients’ quality of life and overall survival. Patient preference studies can help to identify what matters most to patients. This study aims to provide an overview of published patient preference studies in breast cancer, focusing on (i) the design of the study, (ii) preference outcomes including preference heterogeneity, (iii) recruitment strategies, and (iv) patient involvement. Methods: For this scoping review, a search strategy was created for five databases (PubMed, Embase, Scopus, Web of Science Core Collection, and CINAHL), based on the concepts ‘breast cancer’ and ‘patient preference’. The articles were screened double-blind in two phases, after which, the relevant data was extracted and analyzed. Results: A total of 31 articles were selected based on the eligibility criteria. The studies were published over a wide time range (1995–2024), and across different countries. Different methodologies were used, and different attributes were included, mainly related to adverse events of treatments and survival elements. Survival elements were almost always considered important when included. Preference heterogeneity was assessed in 24 of the included studies. The involvement of patients in these studies varied; in two studies, patients were involved in an advisory board; in five studies, patients provided feedback on the preference study conduct via interviews or focus group discussions; and in twelve studies, pilot tests were mentioned. Conclusions: The studies show diverse methods, outcomes, and patient involvement strategies. This may complicate the implementation of preferences in decision-making, suggesting preference studies with clear objectives and implementation strategies to create impact for and with patients. Full article

Background: Community-Based Participatory Research (CBPR) has proven effective in promoting health research in hard-to-recruit and underserved populations. Tai Chi Prime is a National Council on Aging-certified fall prevention program. However, it has not been widely disseminated in African American (AA)/Black and Latinx communities. Guided by the Consolidated Framework for Implementation Research (CFIR), this study examined the process of working with a community advisory board (CAB) to adapt and disseminate Tai Chi Prime within these communities, as well as facilitators and barriers to CAB success. Methods: Eight CAB members met with researchers monthly virtually over a two-year period. Meetings focused on reviewing Tai Chi Prime materials, discussing cultural adaptations, and identifying dissemination strategies relevant to AA/Black and Latinx communities. Detailed notes from 24 meetings were compiled. In addition, semi-structured interviews were conducted with five CAB members and two researchers to capture individual reflections on their experiences, roles, and perceived impact. Data was analyzed using directed content analysis. Results: CFIR constructs helped illuminate how CAB members’ embedded community expertise, organizational partnerships, available resources, shared vision and transparent communication influenced the cultural adaptation and dissemination of Tai Chi Prime. Study findings also highlight important areas that extend beyond CFIR, particularly the cultural knowledge and power-sharing responsibilities undertaken by CAB members as co-researchers. These insights underscore the need to integrate equity-focused and community-engaged research principles into implementation frameworks when working with communities of color. Conclusions: Findings highlight the value of leveraging existing academic–community partnerships. Community-engaged researchers can use the lessons learned from this CAB to build a replicable model of sustainable partnerships with their AA/Black and Latinx community partners, as can others involved in health services research and policy. Full article

In the process of determining whether a health technology should be covered by healthcare systems, patients and their representatives were initially excluded from both evaluations and decision-making. In Europe, direct dialogue between patient organisations and regulatory authorities—particularly in the pharmaceutical sector—began in the early 1990s. It was only decades later, as the high cost of medicines created new challenges, that authorities recognised the necessity of engaging with patients. Patients’ contributions to the assessment of a health technology begin with discussions about the need for the technology in question. Initially, these discussions involve the developer, and later—after research and development—regulators, HTA assessors, and payers. Given that multiple technologies may be under development, patients and their organisations often prioritise those that generate the most interest within the patient community. They can then share their perspectives with evaluators during the horizon-scanning phase. Another key contribution is the role patients play in guiding clinical research by participating in scientific advice. Finally, during the assessment and appraisal stages, various methods are used to gather their views. Full article

Background: A key barrier to realizing the full potential and long-term collection of patient-reported outcomes (PROs) is the limited understanding of user experience (UX) factors that influence sustained patient engagement with digital PRO tools. Most existing research focuses on disease-specific or country-specific solutions, leaving a gap in identifying shared UX determinants that could inform scalable, cross-disease European digital health frameworks. This fragmentation hinders interoperability and increases development costs by requiring separate tools for each context. This case study aims to address this gap by identifying key UX features that optimize PRO collection across diverse chronic conditions in Europe within the Health Outcomes Observatory project, enhancing continuous (primary use) and large-scale (secondary use) data collection. Objective: This study aimed to identify and analyze key UX factors that support adoption and sustained use of PRO collection tools among patients with chronic diseases across multiple European countries. Methods: Patient focus groups were conducted in four chronic disease areas: cancer, inflammatory bowel disease (IBD), and diabetes (type I and II) across six European countries. Participants were recruited purposively through national patient advisory boards to ensure diversity in age, gender, and disease type. Sessions were moderated by trained qualitative researchers following a standardized guide, and discussions were transcribed verbatim and coded in researcher pairs to ensure intercoder reliability through iterative consensus. A modified thematic analysis, guided deductively by the UX Honeycomb model and inductively by emergent themes, was used to identify cross-disease UX determinants. Results: In total, 17 patients and patient representatives participated (76% female; 4 diabetes, 6 IBD and 7 cancer). We identified six core UX factors driving patient engagement for all disease groups: compatibility with other technologies, direct communication with the care team, personalization, ability to share data, the need for educational material and data protection were identified as key aspects of PRO technologies. However, the customizability of the app is crucial. Not all disease groups had the same needs, and participants specifically requested that the app provide information relevant to their own condition. Disease-specific needs, like T1D patients desiring glucose monitoring integration, were identified. IBD patients highlighted flare detection abilities and cancer patients especially sought side-effect comparisons. Conclusions: Our findings indicate that a unified yet customizable PRO platform can address shared UX needs across diseases, improving patient engagement and data quality. Incorporating features such as seamless data transfer, personalization, feedback, and strong privacy measures can foster trust and long-term adoption across European contexts. In addition to some disease-specific issues, most needs for the backbone of the app were shared among the disease areas. This shows that a shared app between diseases might be preferable and, in case of comorbidities, could ease self-management for patients. Last, to ensure full potential for every user and every disease, customization is crucial. Full article

Background: The Canadian HIV Cure Enterprise (CanCURE) is a pan-Canadian research collaboratory, investigating approaches for achieving sustainable HIV remission. In preparation for the next research cycle, CanCURE researchers and the Community Advisory Board (CAB) co-designed a web-based survey to identify HIV research priorities from the perspective of people with HIV (PWH) in Canada. The current study examined gender-based differences in these priorities. Methods: From August to December 2024, we recruited PWH across Canada through community organizations and community members. We collected data using REDCap electronic data capture tools hosted at The Research Institute of the McGill University Health Centre. The survey included 36 demographic questions, 16 questions related to general knowledge about HIV and HIV cure-related concepts, and 21 questions ranking research priorities. Knowledge questions were multiple choice, while priorities could be ranked on a scale. We summarized participant characteristics via descriptive statistics, and the research priorities were further stratified according to gender. Results: Of 109 participants, 48.6% self-identified as men, 46.8% as women, and 4.6% as two-spirit, non-binary, agender, or other. The median age was 53 years old. Approximately one-third of participants had lived with HIV for ≤14 years, one-third for 15–24 years, and one-third for ≥25 years. Overall, the median knowledge score of respondents was 79%. Among the 78 participants with prior HIV research experience, three times as many men (61.1%) as women (19.0%) participated in interventional studies involving medication or medical procedures. Men ranked preventing HIV transmission to partners as a priority, studying where the virus hides as the second, and avoiding high comorbidity risks as the third. In contrast, women ranked not having to take pills daily as a priority and avoiding higher risks for comorbidities as the second priority. Both genders equally valued expanding community involvement in HIV cure research. However, men focused more on integrating social and behavioural research, while women emphasized the need for diverse ethnic representation in research. Conclusions: Although both men and women share some common priorities regarding HIV cure research, there are notable gender differences in their specific concerns. Furthermore, a significant gender gap in participation in interventional studies, essential for advancing HIV cure research, highlights the importance of aligning research priorities with concerns of both genders. Full article

This study examines the association between Saudi banks’ internal adoption of AI-enabled FinTech-related digital tools and their financial performance, sustainability performance, and financial stability over the period 2015–2024. Using a panel dataset of 10 banks, the analysis investigates how the adoption of AI-driven technologies—such as machine-learning credit assessment, robo-advisory systems, and automated compliance tools—is related to market performance (Tobin’s Q), accounting performance (ROA and ROE), financial stability (Z-Score), and sustainability outcomes measured by both Bloomberg ESG Disclosure Score and the LSEG ESG performance-oriented score. To ensure robust inference and reduce simultaneity concerns, the empirical strategy employs Pooled OLS and Fixed Effects Models with Driscoll–Kraay standard errors, as well as a dynamic Fixed Effects Models incorporating lagged dependent variables, lagged independent variables, and shock-interaction terms. Bank-specific characteristics—including size, age, leverage, liquidity, loan-to-deposit ratio, non-performing loans, net interest margin, market capitalization, and board size—are included as controls. The findings indicate a positive and statistically significant relationship between banks’ internal adoption of AI-enabled digital/FinTech-related technologies and their financial performance, sustainability performance, and financial stability. These relationships remain robust across estimation approaches, providing insights for policymakers, regulators, and bank managers seeking to advance digital transformation while safeguarding financial soundness and supporting sustainable development in the Saudi banking sector. Full article

Background/Objectives: Systemic Lupus Erythematosus (SLE) is a multifactorial disease that significantly affects patients’ quality of life (QoL) and poses management challenges. This project combined a nationwide patient listening initiative with an Advisory Board (AB) to identify unmet needs and perceptions, aiming to integrate patient perspectives into decision-making and enhance SLE care. Methods: The “PaLESiamoci!” project, conducted by IQVIA with two patient organizations (Gruppo LES Italiano and APMARR), included both qualitative and quantitative phases. Ten patients completed disease diaries and one-hour interviews, while 151 others voluntarily filled a PO-administered survey including the validated 12-item Medical Outcome Short Form (SF-12) and items on physical, emotional, and daily life impact. Insights from these phases informed the AB discussion involving clinicians and patient representatives on six key topics. Results: Patients with SLE showed lower Physical (−13.4) and Mental (−14.0) Component Summary scores than the Italian population, indicating reduced social and work functioning. Despite EULAR recommendations to minimize corticosteroid use, 64% of patients remained on corticosteroids. The AB discussions revealed key unmet needs, including differing awareness of organ damage risks, corticosteroid-related adverse events, and adherence challenges, as well as the need for non-pharmacological and multidisciplinary support. Conclusions: The project highlighted major gaps and opportunities in SLE management. Patient organizations and rheumatologists emphasized developing tailored educational materials, strengthening rheumatologist–patient communication, and promoting multidisciplinary, patient-centered approaches to improve overall care. Full article

This study reviews the influence of the U.S. Good Neighbor Environmental Board on water management along the U.S.–Mexico border. The GNEB has a unique mandate to inform the president and congress of needed infrastructure, investments, and policy actions supporting sustainable development of communities and natural resources in the border region. The study uses the GNEB’s own policy recommendations in its annual reports to consider its influence on border water management over more than 25 years. It concludes that while the GNEB’s recommendations have not had a direct impact on border water management policy, it has played an important role in describing border water management conditions; endorsing and legitimizing federal border environmental programs; spotlighting and advocating for best practices in border water management, including promoting policy integration among federal, state, and local water management programs; and advancing binational cooperation in developing and implementing border environment and water-related programs. Full article

Hispanic, Asian, and African Americans are disproportionately affected by liver cancer, viral hepatitis B (HBV), and viral hepatitis C (HCV), in part because of barriers to liver cancer awareness and prevention. We implemented a community-based, culturally tailored initiative to raise awareness and promote uptake of behaviors for liver cancer prevention, early diagnosis, monitoring, and treatment. Guided by community-based participatory research (CBPR) principles and built on well-established collaboration with community-based organizations, we actively engaged the community advisory board (CAB), community health workers, and community members in multiple phases of (1) a community-based educational initiative, (2) a city-wide bus campaign, and (3) community health fairs. This multilevel initiative saw notable changes in community members’ knowledge of liver cancer, viral hepatitis, lifestyle behaviors like dietary patterns, and uptake of screening tests for HBV/HCV. Additionally, the comprehensive engagement of CAB, healthcare workers, and community members significantly benefited community capacity building on cancer research and health promotion. These CBPR-guided community initiatives had remarkable positive impacts on promoting liver cancer awareness and prevention among underserved racial/ethnic minorities. The academic–community relationships built on and strengthened through shared power, mutual respect, and trust serve as the foundation for sustainable community growth and empowerment. Full article