Challenges In Care Research Articles

Mapping the Policy Alternatives for Rare Cancer

Abstract Issue This policy research addresses the issue of rare cancers in the European Union (EU). Rare cancers have an annual incidence rate of less than 6/100 000 and face challenges in diagnosis, clinical care, and research investment. Survival rates for rare cancers are lower compared to common cancer types, with significant variations among EU Member States. Description of the problem Policy frameworks for rare cancers are often fragmented and greatly vary across the EU. This study aims to develop a tool for assessing policy alternatives by reviewing existing national rare cancer policies, conducting interviews with experts, and analysing core stakeholders at the EU level. Results The main policy alternatives covered five domains: definition, registration, organisation of care, access to innovative therapies, and funding. Interviews revealed four policy options for each domain. Six core stakeholders were determined: patient organisations, healthcare professionals, researchers, industry, health legislators, and health authorities. A pilot policy assessment tool was developed on this basis. Lessons The pilot study coherently explored policy alternatives for rare cancers in the EU. Using these findings, policymakers and researchers can assess the impact of different policy options at a national level and contribute to the development of a unified EU policy framework for rare cancers. The pilot survey was also useful to collect input from the core stakeholders. Key messages • This study identifies key policy domains and feasible alternatives. A pilot preference assessment study based on these options can aid in EU policy development. • Navigating rare cancer policy complexities demands collaboration and innovation. Engaging stakeholders and exploring alternatives can forge a more effective EU framework for addressing rare cancers.

The impact of pre-myocardial infarction exercise frequency on prognosis in Non-ST segment elevation myocardial infarction patients

Abstract Background Non-ST segment elevation myocardial infarction (NSTEMI) presents a significant challenge in cardiovascular care, often requiring urgent management. Understanding the impact of exercise frequency prior to the onset of NSTEMI on post-event prognosis is crucial for developingmedical strategies. Purpose This study aimed to investigate the clinical characteristics and outcomes of NSTEMI patients based on their exercise frequency before experiencing NSTEMI, comparing those with regular exercise (once or more per week) versus those with infrequent or no exercise. Methods This study included acute myocardial infarction cohorts from 71 secondary or tertiary hospitals between January 1, 2010 and June 30, 2023. Inclusion criteria comprised NSTEMI patients evaluated for exercise frequency using the Community Health Questionnaire before hospitalization. The primary outcomes were major adverse cardiovascular and cerebrovascular events (MACCE), net adverse clinical events (NACE), and all-cause mortality, with secondary outcomes comprising the individual components of MACCE and NACE. Propensity score matching (PSM) was employed to adjust for differences in clinical characteristics between the two groups. Multivariable Cox regression and robust multivariable Cox regression were conducted before and after PSM to evaluate the impact of exercise frequency on outcomes. Results The final study population consisted of 38753 participants (42.7% in the High-frequency exercise group). The median follow-up duration was 1518 days, the mean age was 67.80±11.47 years, 61.6% were male. Compared to individuals with infrequent exercise before NSTEMI, those with regular exercise exhibited significantly lower risks of MACCE [aHR 0.93(0.90-0.96), p<0.001], NACE [aHR 0.91(0.88-0.95), p<0.001], and all-cause mortality [aHR 0.88(0.85-0.92), p<0.001]. However, regular exercise before NSTEMI was associated with an increased risk of coronary revascularization [aHR 1.14(1.06-1.23), p<0.001]. These findings remained consistent in the robust multivariate Cox regression analysis conducted after adjusting for differences between the two groups with PSM (Figure 1). After PSM, survival analysis indicated that the incidence of primary outcomes was lower in individuals with high exercise frequency before NSTEMI compared to those with low exercise frequency before NSTEMI, with all-cause mortality rates of 26.9% vs. 30.8%, MACCE rates of 37.2% vs. 38.5%, and NACE rates of 37.9% vs. 39.1%, all with log-rank p-values <0.001. Conclusion This study highlights the protective role of regular physical activity befor NSTEMI in reducing adverse post-NSTEMI outcomes. Promoting pre-NSTEMI physical activity can be a key element in preventive cardiology, potentially improving prognosis and decreasing the likelihood of cardiovascular events post-NSTEMI.Figure 1

The paracetamol challenge in intensive care: going green with paracetamol

The paracetamol challenge in intensive care: going green with paracetamol

Long-term care facilities: what do we know about multidrug-resistant organisms in this setting?

Abstract Background People with intellectual disabilities (ID) are an often overlooked high-risk group for health-related issues. In the Netherlands, people with ID may reside at home, in small communities, or within long-term care facilities. This diverse living arrangement challenges the healthcare system, with responsibilities spread among multiple formal and informal caregivers. During an outbreak with multidrug-resistant organisms (MDROs), coordinated efforts should be made to prevent further spread throughout all healthcare settings. Therefore, adequate infection prevention and control (IPC) practices, are required to improve or maintain individual health outcomes. To understand the complexity of MDROs in long-term care for people with ID, it is important to gain insight into knowledge, attitudes and perceptions of involved healthcare professionals and, investigate innovative strategies that could play a role in surveillance or monitoring an outbreak within this setting. Methods We conduct several studies in long-term care for people with ID, using a wide scale of methodologies including a cross-sectional survey study and innovative quantitative methods, such as wastewater surveillance. Results We have identified several challenges in long-term care for people with ID related to IPC and MDROs. First, while IPC and MDRO guidelines exist, they lack specific context and applicability to the long-term care setting. Second, proper use of hand gloves among healthcare professionals demands increased attention as knowledge about this preventive measure seems to be insufficient. Finally, given the challenges in sample collection for MDRO screening, non-invasive strategies are needed to offer insight during outbreaks, serving surveillance or outbreak management purposes. Conclusions Insights from these studies could inform future strategies to prevent or respond early in case of an MDRO outbreak within long-term care for people with ID.

5.X.1. Co-designing for policy impact: Belgium’s monitoring & evaluation framework for cancer care & control

Abstract Cancer is one of the main public health challenges, and the second leading cause of mortality in the EU. It is Belgium’s second leading cause of adult death after circulatory diseases and has been an increasing burden of disease in recent years. Recognizing the urgency of tackling the entire disease pathway, the European Commission (EC) has launched Europe’s Beating Cancer Plan (EBCP), a policy-driven strategy, and the Mission on Cancer, a research-focused undertaking. In Belgium, Sciensano’s Cancer Centre has been charged with the coordination and implementation of these programs, pioneering the setup of a dedicated structure to coordinate them. While Belgian public, academic, private and non-for-profit entities have been highly involved in these EU initiatives since their launch, there is currently no mechanism to monitor the impact of EBCP’s uptake and implementation in Belgium. Moreover, in contrast to the investment and momentum at the European level, the last Belgian Cancer Plan dates from 2008, with its most recent evaluation being published in 2013, highlighting an important gap. To address this gap, the Cancer Centre was asked by the Federal Cabinet to develop a new monitoring and evaluation (M&E) framework for cancer care and control in Belgium. With a view to avoiding traditional top-down approaches, it was decided that the framework would be designed co-creatively, by engaging patients and experts in the field. The aim was to enable the iterative and flexible monitoring of Belgian policies related to the EBCP’s implementation, while generating buy-in from stakeholders. To achieve this goal, a modified Delphi process was used, with complementary qualitative data collection in the form of focus group discussions with experts across the cancer continuum. A Steering and Patient Committee were put in place to provide stewardship over the process, and based on their feedback, additional patient workshops were run to ensure M&E priorities for patients were taken into account. The framework will cover the entire spectrum of cancer prevention and control, as well as transversal themes such as inequalities and patient-centeredness. It will also anticipate future evolutions and undergo adjustments when needed. This workshop will use a Pecha Kucha approach, with panelists sharing insights from the Belgian case study. The session will guide the audience through a story of the strengths and pitfalls of co-creating an M&E framework in the field of public health monitoring. Topics covered will include challenges of monitoring cancer care and control policies, approaches taken in Belgium to overcome these challenges, and the importance of involving diverse stakeholders in the process. A moderated discussion will allow participants to share their perspectives and ask questions. Attendees will walk away with a real-world example on how to challenge top-down paradigms of population-level M&E frameworks and identify transferable elements for adaptation in their own settings. Key messages • Europe’s Beating Cancer Plan (EBCP) provides opportunities to tackle the second leading cause of disease in the EU but will require innovative approaches to monitor uptake and impact. • Development of Belgium policy-actionable monitoring & evaluation framework shows how co-creation can challenge top-down paradigms in public health monitoring and assess the uptake and impact of EBCP. Speakers/Panelists Gabrielle Schittecatte Sciensano, Brussels, Belgium Jinane Ghattas Sciensano, Brussels, Belgium Robbe Saesen Sciensano, Maaseik, Belgium

Drug-use-associated infective endocarditis in Denmark

Abstract Introduction Infective endocarditis (IE) has high mortality and the incidence is rising. Intravenous drug use is a risk factor for IE and poses challenges in clinical care. Amid the opioid crisis in many countries, rates of drug-use-associated IE (DU-IE) are increasing. While drug use in Denmark has remained stable the last decade, little is understood about the features and prognostic impact of DU-IE in developed nations not facing a current opioid crisis. Further, with multiple preventive measures deployed in local Danish regions, data on the evolution of DU-IE are warranted. Purpose To examine the temporal evolution, baseline characteristics, and long-term rates of all-cause mortality and IE recurrence in patients with DU-IE compared with patients with non-DU-IE. Methods This nationwide cohort study identified all first-time IE-patients (1999-2018) and categorized them in 1) patients with DU-IE, and 2) patients with non-DU-IE. Drug use was defined using ICD-8/10 codes or treatment for opioid use disorder. Patients were followed from the date of discharge, and absolute one-year rates of mortality and IE recurrence were examined with Kaplan-Meier estimates and the cumulative incidence function, respectively. Outcomes were compared with a multivariable adjusted Cox model. Results We identified 8,843 patients with IE: 407 (4.6%) with DU-IE (61% male, median age 44 years) and 8,436 (95.4%) with non-DU-IE (66% male, median age 72 years). While the absolute number of DU-IE increased, the proportion of DU-IE decreased from 5.9% in 1999-2003 (n=87) to 3.8% in 2014-2018 (n=114). Patients with DU-IE had a higher proportion of bloodstream infection with Staphylococcus aureus (49.4% vs 26.7%, p<0.001); conversely, they had a lower proportion of bloodstream infections with Streptococcusspecies (14.4% vs. 26.2%, p<0.011). Patient with DU-IE had lower in-hospital mortality compared with non-DU-IE (15.5% vs. 20.9%, p<0.001). Among those surviving admission, the one-year cumulative incidence of all-cause mortality was 16.9% in DU-IE and 17.3% in non-DU-IE (p=0.82), yet in adjusted analysis, DU-IE was associated with a higher one-year mortality rate (HR 1.64 [95% CI:1.23-2.21]) (Figure). The one-year cumulative incidence of IE recurrence was 12.8% in DU-IE and 4.3% in non-DU-IE, which corresponded to an adjusted HR of 3.39 (95% CI:2.35-4.88) in DU-IE. Conclusion While an increase in the absolute number of patients with DU-IE was observed, the proportion among all IE-patients was on the decline in Denmark until 2018—which contrasts with other countries where physicians currently battle collateral damage of the opioid crisis. Although drug use was associated with lower in-hospital mortality, it was striking that even though patient with DU-IE was almost 30 years younger, they still had higher rates of all-cause mortality and a more than three-fold increase in IE recurrence one year following discharge.

Beyond Injuries: February 6th Kahramanmaras Earthquakes and Other Patients Transported by Ambulance.

This study evaluates the Emergency Medical Service system and overall emergency preparedness by analyzing ambulance-transported patients during the February 6, 2023 earthquakes, focusing on those without earthquake-related injuries (medical emergencies and traumas not caused by earthquakes). A retrospective, observational case series was conducted, involving patients aged 18 and above transported by ambulance between February 6 and March 6, 2023. Patient demographic characteristics, vital signs, diagnoses, treatments, and outcomes were recorded. Predisposing factors for ambulance transportation including post-earthquake health facility issues, housing problems, hygiene, heating, and smoke exposure were meticulously analyzed. The study included 1872 patients, with a 55.4% hospitalization rate and a 13.7% mortality rate. Cardiovascular emergencies were the primary reason for admission (28.9%). Patients from the hospital in the study's location form Group 1, whereas those from other earthquake-affected provinces constitute Group 2. Significant predisposing factors for ambulance transportation included post-earthquake health facilities (P < 0.001), housing problems (P < 0.001), hygiene (P < 0.001), heating (P = 0.001), and smoke exposure (P < 0.001). In Group 2, pneumonia (P = 0.001), soft tissue infection (P = 0.002), sepsis (P = 0.004), carbon monoxide poisoning (P < 0.001), and diabetic emergencies (P = 0.013) were statistically significantly more frequent. Analyzing post-earthquake ambulance-transported patients is vital to comprehend the demand for emergency health care and address post-disaster health care challenges.

Escalating Health Crisis: Dissecting Mortality Causes and Trends Among Indigenous Populations in Northeast Brazil.

In Northeast Brazil, the poorest region of the country, indigenous communities face critical health care challenges. Despite legal entitlements to the Unified Health System (SUS), systemic barriers persist, exacerbating health disparities and mortality. This ecological study analyzed mortality trends and causes of death within the Special Indigenous Sanitary District (DSEI) Alagoas-Sergipe over a decade. Data on deaths from 2012 to 2022 were obtained from the Indigenous Health Secretariat. Causes of death were classified into 13 categories. Mortality rates per 1,000 indigenous inhabitants were calculated, and trends were analyzed using the Mann-Kendall test. The study also compared causes of death by age group. Mortality rates ranged from 3.3 to 5.2 per 1,000, showing a moderate upward trend over time (τ = 0.5, p = 0.042). Predominant causes included heart and vascular disorders (24.3%), external causes (12.4%), respiratory issues (11.1%), and infections (10.9%). About one-third of pediatric deaths were associated with general neonatal complications. This study highlights increasing mortality in indigenous communities in Northeast Brazil. The predominant causes of death reflect broader public health concerns. These trends emphasize the urgency for more effective, culturally sensitive public health policies and improved health care access.

Challenges posed by climate hazards to cardiovascular health and cardiac intensive care: implications for mitigation and adaptation.

Global warming, driven by increased greenhouse gas emissions, has led to unprecedented extreme weather events, contributing to higher morbidity and mortality rates from a variety of health conditions, including cardiovascular disease (CVD). The disruption of multiple planetary boundaries has increased the probability of connected, cascading, and catastrophic disasters with magnified health impacts on vulnerable populations. While the impact of climate change can be manifold, non-optimal air temperatures (NOTs) pose significant health risks from cardiovascular events. Vulnerable populations, especially those with pre-existing CVD, face increased risks of acute cardiovascular events during NOT. Factors such as age, socio-economic status, minority populations, and environmental conditions (especially air pollution) amplify these risks. With rising global surface temperatures, the frequency and intensity of heatwaves and cold spells are expected to increase, emphasizing the need to address their health impacts. The World Health Organization recommends implementing heat-health action plans, which include early warning systems, public education on recognizing heat-related symptoms, and guidelines for adjusting medications during heatwaves. Additionally, intensive care units must be prepared to handle increased patient loads and the specific challenges posed by extreme heat. Comprehensive and proactive adaptation and mitigation strategies with health as a primary consideration and measures to enhance resilience are essential to protect vulnerable populations and reduce the health burden associated with NOTs. The current educational review will explore the impact on cardiovascular events, future health projections, pathophysiology, drug interactions, and intensive care challenges and recommend actions for effective patient care.

End-of-Life Decision Making in Patients with Advanced Dementia: The Perspectives of the Korean General Population and Clinicians.

Korea's transition into a super-aged society brings to the forefront the escalating dementia prevalence and the consequent rise in mortality, highlighting the need for effective end-of-life (EOL) care strategies. Despite legislative advancements, gaps remain in addressing the medical and ethical challenges of EOL care for patients with advanced dementia, particularly in evaluating treatment options like nasogastric tube (NGT) use and mechanical ventilation (MV). This study investigates the attitudes of the general population (GP) and clinicians in Korea towards EOL treatment decisions. A cross-sectional, web-based survey was conducted among 500 members of the GP and 200 clinicians from a university hospital. Case vignettes were used to assess attitudes towards EOL treatment decisions, specifically focusing on NGT and MV use, and to explore the influencing factors. There was a notable difference in favorable attitudes toward NGT withdrawal between the GP (62.2%) and clinicians (39.0%). Otherwise, both groups showed higher acceptance of MV withholding (82.2% [GPs] and 82.5% [clinicians]) when informed of the patient's verbal intention regarding life-sustaining treatment (LST), and attitudes were more positive with written advance directives. Also, it was decreased when patient intentions were unclear. The results suggested the need to consider NGT as a medical intervention requiring a risk-benefit analysis. Although LST decision-making in patients with advanced dementia is still limited in Korea, this study showed the shared recognition among the GP and clinicians of the importance of EOL treatment decisions that consider patient wishes and quality of life for patients with advanced dementia.

Peadiatric amputation from traditional bone setters’ gangrene in Ibadan: a malady

Background: Pediatric amputations resulting from gangrene pose a significant medical challenge, especially in resource-limited settings. In Nigeria, traditional bone setters (TBS) often serve as the first point of contact for musculoskeletal injuries, but their practices can lead to severe complications, including gangrene. Our hospital manages many of such cases. This study aims to explore the epidemiology, clinical presentation, and outcomes of pediatric patients who developed gangrene requiring amputation following TBS treatment, with the goal of informing public health strategies and improving pediatric care quality. Methods: The study is a retrospective study which seek to extract the data from the hospital record all the patient who underwent amputation due to gangrene after initial TBS treatment. All the case notes were retrieved and data was extracted and analyzed using descriptive statistics. The study adhered to ethical standards and anonymized data to protect patient confidentiality, ensuring the study's integrity. Results: The study involved 33 pediatric patients aged 8.3 years, with a significant gender disparity. Most patients were from the Yoruba ethnic group and practiced Islam. 87.9% of parents had no formal education. Gangrene was most common in the left hand, and falls were the leading cause of initial injury. The average surgery time was 81.2 minutes, with a 13-day hospital stay. Post-operative complications occurred in 43.5% of patients, with surgical site infections (SSI) being the most common. Only 8.7% received occupational therapy. Conclusions: The study highlights post-operative care challenges in pediatric amputations, including high complications and limited access to services. It suggests targeted interventions, infection control, and public health campaigns to improve outcomes. Future research should include long-term follow-up studies.

Nitric Oxide-Photodelivering Materials with Multiple Functionalities: From Rational Design to Therapeutic Applications.

The achievement of materials that are able to release therapeutic agents under the control of light stimuli to improve therapeutic efficacy is a significant challenge in health care. Nitric oxide (NO) is one of the most studied molecules in the fascinating realm of biomedical sciences, not only for its crucial role as a gaseous signaling molecule in the human body but also for its great potential as an unconventional therapeutic in a variety of diseases including cancer, bacterial and viral infections, and neurodegeneration. Handling difficulties due to its gaseous nature, reduced region of action due to its short half-life, and strict dependence of the biological effects on its concentration and generation site are critical questions to be solved for appropriate therapeutic uses of NO. Light-activatable NO precursors, namely, NO photodonors (NOPDs), address the above issues since they are stable in the dark and permit in a noninvasive fashion the remote-controlled delivery of NO on demand with great spatiotemporal precision. Engineering biocompatible materials with NOPDs and their combination with additional imaging, therapeutic, and phototherapeutic components leads to intriguing light-responsive multifunctional constructs exhibiting promising potential for biomedical applications. This contribution illustrates the most significant progress made over the last five years in achieving engineered materials including nanoparticles, gels, and thin films, sharing the common feature to deliver NO under the exclusive control of the biocompatible visible/near infrared light inputs. We will highlight the logical design behind the fabrication of these systems, illustrating the potential therapeutic applications with particular emphasis on cancer and bacterial infections.

Harnessing Cannabis: Pain Management Strategies for Oncology Patients – A Narrative Review

Cancer-related pain represents a serious challenge in oncological care, often refractory to conventional analgesics and significantly impacting patients' quality of life. In recent years, medical marijuana (cannabis) has emerged as a potential adjunctive or alternative therapy for managing pain in oncological patients. This narrative review critically evaluates the existing literature on the efficacy, safety, and underlying mechanisms of action of medical marijuana in alleviating pain associated with cancer. Drawing upon a synthesis of preclinical and clinical studies, as well as meta-analyses and systematic reviews, this review provides insights into the scientific basis and clinical implications of utilizing medical marijuana in oncological pain management.

24 Community provider perspectives on an autism learning health network: A qualitative study

Abstract Background Although autism is highly prevalent, no single care centre has a sufficient number of patients to produce generalizable knowledge; this slows the pace of quality improvement research. Learning health networks (LHNs) offer a promising solution to improve the quality and efficiency of healthcare by integrating clinical and research data. The Autism Care Network (ACNet) is an LHN composed of 20 clinics across the United States and Canada dedicated to developing the most effective approach to care for children with autism. In Canada, the majority of autistic patients receive a majority of their ongoing care in the community. Therefore, to make meaningful improvements in the continuum of care for patients and their families, it is essential that the ACNet be extended to include community physicians. Objectives The primary objectives were to (1) understand the current data collection practices, learning needs, clinic capacity, areas of improvement, and overall interest of community physicians in participating in a LHN and (2) identify community physicians’ perspectives on the benefits and disadvantages of participating in a LHN and ways in which their engagement in a LHN can be supported. Design/Methods In-depth semi-structured interviews were conducted participants who were purposively sampled from community providers who had previously participated in autism-focused educational programming. The interview guide was developed by the three ACNet sites based on experience with LHNs and working with community physicians. Data were analyzed using an interpretative phenomenological analysis approach with a social constructivist paradigm. Results Analysis of 29 interviews identified 5 primary themes: (1) “Navigating Administrative Challenges,” which highlighted the lack of time, resources, and administrative capacity in the community; (2) “Improving Data Collection Practices”, which emphasized the barriers to consistently collecting information from patients and families; (3) “Increasing Provider Confidence and Competence,” which explored the challenges of navigating the everchanging landscape of community autism care; (4) “Breaking Down Silos”, which focused on fragmented care and the lack of communication between allied health resources, diagnostic hubs, and community physicians; and (5) “Systemic and Societal Barriers to Achieving Best Practices,” which explored the systemic barriers that impact autism care for physicians and families. Conclusion This study provides an understanding of the experiences of community physicians regarding the challenges of community-based autism care. LHNs have the potential to address several of the issues highlighted by community physicians in autism care. Additionally, LHNs can play an important role in improving community care in fields beyond autism.

Central nervous system tumors in adolescents and young adults: A Society for Neuro-Oncology consensus review on diagnosis, management, and future directions.

Adolescents and young adults (AYAs; ages 15-39 years) are a vulnerable population facing challenges in oncological care, including access to specialized care, transition of care, unique tumor biology, and poor representation in clinical trials. Brain tumors are the second most common tumor type in AYA, with malignant brain tumors being the most common cause of cancer-related death. The 2021 WHO Classification for central nervous system (CNS) Tumors highlights the importance of integrated molecular characterization with histologic diagnosis in several tumors relevant to the AYA population. In this position paper from the Society for Neuro-Oncology (SNO), the diagnosis and management of CNS tumors in AYA is reviewed, focusing on the most common tumor types in this population, namely glioma, medulloblastoma, ependymoma, and CNS germ cell tumor. Current challenges and future directions specific to AYA are also highlighted. Finally, possible solutions to address barriers in the care of AYA patients are discussed, emphasizing the need for multidisciplinary and collaborative approaches that span the pediatric and adult paradigms of care, and incorporating advanced molecular testing, targeted therapy, and AYA-centered care.

Impact of Hyponatremia and ADH Secretion in MIS-C and COVID-19: An Integrative Approach of Prognostic and Diagnostic Markers

The COVID-19 pandemic has introduced challenges in pediatric care, especially due to the emergence of Multisystem Inflammatory Syndrome in Children (MIS-C), a severe condition associated with SARS-CoV-2 infection. This study investigated the impact of hyponatremia and antidiuretic hormone (ADH) secretion corelated to clinical outcomes in these patients. We conducted a retrospective cohort study, including 118 pediatric patients, with a detailed sub-cohort analysis of 53 patients for ADH secretion markers. Hyponatremia, defined by age-specific sodium thresholds, was present in 47.22% of MIS-C cases and 28.04% of COVID-19 cases. Ordinal logistic regression analysis revealed that severe hyponatremia significantly increased the likelihood of more severe clinical outcomes (β = 3.514, p &lt; 0.001). A significant correlation was found between hyponatremia and prolonged hospitalization. For ADH secretion, a predictive model using ridge regression was analysed, which demonstrated that serum sodium level, U/P ratio, and hospitalization duration are key predictors of SIADH. This model fit was assessed using the ROC curve with an AUC of 0.96, indicating reliable model performance. Our findings underscore the significant role of hyponatremia on the clinical severity and hospitalization outcome of COVID-19 and MIS-C in pediatric patients.

Stress and Quality of Life of Parents of Children With POLR3-Related Leukodystrophy: A Cross-Sectional Pilot Study.

Background: RNA polymerase III (POLR3)-related leukodystrophy is a rare, neurodegenerative disorder characterized by hypomyelination, hypodontia, and hypogonadotropic hypogonadism. Despite the challenges of caring for a child with POLR3-related leukodystrophy, few studies have examined parents' disease burden. We sought to investigate quality of life and stress levels amongst parents of children with POLR3-related leukodystrophy. Methods: 43 parents of 32 children completed questionnaires on demographics, stress, quality of life, coping mechanisms, and experience of injustice. Detailed clinical data was collected from all patients. Results: Mothers (t[27] = -8.66, P < .001) and fathers (t[16] = -4.47, P < .001) had lower quality of life scores compared to the normative population, yet 80% of parents' stress scores fell within the normal stress range. Parents' experience of injustice scores were high (>60). Correlations were found between and within parents' scores. Years since disease onset and certain life circumstances correlated to mothers' quality of life scores; however, no correlation was found between modifiable factors and fathers' quality of life scores. Helpful coping mechanisms included those that allowed parents to be involved in their child's life. Conclusions: This is the first study to assess stress and quality of life in this population. These results shed light on the importance of implementing services and social support to improve the well-being of parents.

Nursing Care and Ethical Challenges in the COVID-19 Pandemic: A Review

The COVID-19 pandemic has placed unprecedented pressures on healthcare systems across the globe, with nurses playing a pivotal role in managing patient care during this crisis. As front-line caregivers, nurses were not only responsible for delivering essential medical care but also found themselves navigating a series of ethical challenges that were often fraught with complexity. This review delves into the multifaceted role of nursing during the pandemic, focusing on both the clinical care provided and the significant ethical dilemmas faced by nurses. One of the most pressing ethical challenges was the allocation of scarce medical resources. The surge in COVID-19 cases led to critical shortages of ventilators, ICU beds, personal protective equipment (PPE), and other medical supplies. Nurses, often collaborating with multidisciplinary teams, were forced to make difficult decisions regarding which patients would receive these limited resources, raising profound ethical concerns about fairness and equity in healthcare. The review highlights the need for transparent, consistent decision-making frameworks that prioritize justice and equity. Such frameworks help ensure that resource allocation is guided by ethical principles rather than subjective judgments, thus fostering a fairer and more consistent approach to patient care. Another significant ethical issue addressed in this review is the balance between personal safety and professional duty. Nurses were often placed in situations where they had to weigh their commitment to patient care against the risks posed to their own health, particularly when faced with shortages of adequate PPE. This balancing act between personal safety and professional obligation introduced ethical dilemmas, such as the extent to which nurses were adequately informed of the risks they faced and whether healthcare institutions fulfilled their responsibility to provide a safe working environment. The review underscores the importance of developing robust infection control measures and ensuring the continuous supply of PPE to safeguard the health and well-being of healthcare workers. Patient autonomy and consent were also critical concerns during the pandemic. The urgency of care for critically ill COVID-19 patients, combined with isolation protocols that restricted family involvement, made it challenging to uphold patients' decision-making rights. The review explores how informed consent processes were affected by the rapid progression of illness and the necessity for immediate medical interventions, often with limited patient or family input. This issue further underscores the need for ethical guidelines that protect patient rights while ensuring timely and effective care. The psychological impact of the pandemic on nurses is another key focus of this review. Nurses faced not only physical exhaustion from long hours of work but also significant emotional strain from witnessing high mortality rates and making difficult ethical decisions. The review emphasizes the need for mental health resources, such as counseling and support groups, to help nurses cope with the emotional toll of their work. Addressing issues such as moral injury, compassion fatigue, and burnout is essential to maintaining a resilient nursing workforce. In conclusion, this review provides a comprehensive examination of the ethical challenges faced by nurses during the COVID-19 pandemic. It highlights the critical need for clear ethical guidelines, transparent resource allocation frameworks, protective measures, and mental health support systems. The lessons learned from this pandemic are invaluable for shaping future responses to global health crises, ensuring that nurses and other healthcare professionals are better equipped to navigate the ethical complexities of emergency care.

Intersectional employee voice inequalities and culture care theory: the case of migrant palliative care nurses inSaudi Arabia.

This narrative literature review examines intersectional employee voice inequalities in a non-Western, high power distance context to develop a multilevel conceptual framework. The authors use Leininger's (1997, 2002) culture care model to explore multilevel influences on intersectional voice inequalities. The article applies insights from a review of 31 studies to the specific challenges of migrant palliative care (PC) nurses in Saudi Arabia. The themes identified in the review indicate how better transcultural communications might mitigate voice inequalities that influence migrant employee wellbeing and intentions to quit which result from cultural incongruities. The impact of national culture differences and intersectional inequalities on employee voice has largely been ignored in academic research. This paper offers unique insights drawing on culture care theory into intersectional voice challenges from a non-Western perspective in the underresearched setting of Saudi Arabia which is mid-way through a national transformation program. It starkly contrasts policy ambitions for advancing healthcare with discriminatory practices based on conservative attitudes which stifle migrant worker voices.

Opportunities and Challenges of Application of Cytosorb Therapy in Sepsis Management

Sepsis is a life-threatening organ dysfunction due to a dysregulated host response to infection. In 2017, an estimated 48·9 million incident cases of sepsis were recorded worldwide, and 11·0 million sepsis-related deaths were reported, representing 19·7% of all global deaths.1 Though overall data related to sepsis is poor but it is also a major health care challenge for resource limited countries. Severe sepsis is a significant &amp; common health problem in ICU patients of Bangladesh2. A continuum of severity from sepsis to septic shock and multi-organ dysfunction syndrome (MODS) exists. MODS is a clinical syndrome characterized by the development of progressive and potentially reversible physiologic dysfunction in 2 or more organs or organ systems that is induced by a variety of acute insults, including sepsis. Sepsis leads to malignant intravascular inflammation, coagulopathy, circulatory derangement, tissue hypoxia, cytotoxicity and apoptosis. As a result, dysfunction of vital organ systems occur. Host response and other factors influenc outcome. Patients with sepsis must be treated with-timely, appropriate antibiotics, intravenousfluids, vasopressor and inotropic support &amp; oxygen therapy.3 Other additional treatments including extracorporeal blood purification techniques (BPT). These techniques include hemofiltration, hemoperfusion, intermittent or continuous high-volume hemofiltration (HVHF), plasmapheresis or adsorption.4 The rationale behind such an approach is to achieve “immune homeostasis” which theoretically reduces the potential damage caused by dysregulation of the host response to infection. Given the pivotal role of cytokine production in sepsis, it follows that removal of these substances, through such BPT, may attenuate the response particularly in the early phase of sepsis.5 Indications include 1) Rhabdomyolysis resulting from Reperfusion syndrome, Trauma, Malignant Hyperthermia. 2) External injuries including Sepsis/Septic shock, Hemorrhagic shock, Trauma, Ruptured aortic aneurysm, Post-Cardiac Arrest Syndrome, Cardio-pulmonary resuscitation, Extensive surgery, Organ transplantation, Cardiosurgical intervention, Severe skin and soft tissue damage, Burns, Necrotizing fasciitis, Post-Cardiotomy Syndrome, Acute Respiratory Distress Syndrome. 3) Diseases: Pancreatitis, Liver insufficiency, Renal insufficiency, Stroke, Myocardial infarction, Cardiogenic shock/Heart failure, Tumor Lysis Syndrome, Hemophagocytosis Syndrome. Liver failure/Hyperbilirubinemia bridging to transplant or to recovery, Life-threatening bleeding under Direct Oral Anticoagulants (DOAC)6. Bangladesh Crit Care J September 2024; 12 (2): 79-80