Search Results (179)

Early diagnosis of cystic fibrosis (CF) through newborn screening (NBS) improves clinical outcomes, but in countries like India, delayed diagnosis increases morbidity, mortality, and likely underestimates infant deaths from CF. We performed a retrospective study at a single center in south India from 2017 to 2025 reviewing children diagnosed with CF before one year of age. Patient demographic, clinical, and genetic data were analyzed to characterize early clinical features and identify factors linked to mortality. Of 56 infants diagnosed with CF, 59% survived (median current age 55 months) while 41% died (median age of death 5 months). Key clinical indicators included sibling death with CF-like symptoms, rapid weight loss, and persistent respiratory or nutritional complications. Mortality risk under one year was significantly linked to hypoalbuminemia (OR 9.7), severe malnutrition (OR 4.4), severe anemia (hemoglobin < 7 g/dL) requiring blood transfusions (OR 3.0), and peripheral edema (OR 4.2). A triad of anemia, hypoalbuminemia, and edema was found to strongly predict death (OR 4.2). Integrating clinical checklists of these manifestations into primary healthcare may improve prompt referrals for earlier diagnosis and treatment. Continued education and advocacy for NBS are essential to reduce potentially preventable CF-related deaths in young children. Full article

SARS-CoV-2 infection can be followed by prolonged symptoms, signs and sequelae, collectively known under the term Long COVID. Hundreds of millions are estimated to suffer from Long COVID. Long COVID, therefore, is a public health crisis that deserves the utmost urgency from all relevant stakeholders, from policymakers to advocacy groups, researchers and healthcare providers. The development of effective definitions and guidelines for Long COVID is crucial to support patients and carers. In this review, I address the following two case definitions of Long COVID developed in the US as a case study for a broader discussion on the sequelae of SARS-CoV-2 infection: the U.S. Government (USG) working definition for Long COVID and the NASEM definition published in 2024. In the first part of this review, I provide a critical appraisal of the USG in light of research, pathophysiology and lived experience, building upon my intervention as a patient expert on a National Academies of Sciences, Engineering, and Medicine (NASEM) panel for defining Long COVID, which examined the USG. In the second part, I raise some pressing concerns to address when approaching Long COVID as a disease entity and as a concept, which I originally submitted to NASEM. In the third part, I offer a critical appraisal of the NASEM definition, the most recent benchmark for Long COVID in the US. The review highlights the importance of broad, expansive and inclusive definitions for Long COVID, accounting for the disease’s heterogeneous, fluctuating and multi-system manifestations. Clinical case definitions for Long COVID must retain their focus on the broader spectrum and scope of the disease entity, while incorporating feedback from people with lived experience, advocates and patient-researchers. Full article

The health technology assessment (HTA) is a multidisciplinary process utilized to determine the clinical, economic, social, and ethical value of new health technologies before they are incorporated into healthcare systems. In the case of rare diseases, such as Cystic Fibrosis (CF), challenges arise due to limited evidence and high treatment costs. Indeed, although CF transmembrane conductance regulator (CFTR) modulators are breakthrough therapies for CF, their incorporation into public health systems has been complex with considerable challenges, especially in low- and middle-income countries. This article presents a descriptive and exploratory case study of the regulatory and policy journey for CFTR modulators to be approved in Brazil. Based on a narrative review and document analysis, we highlight the importance of building lay society knowledge to shape policy decisions and promote equitable access to innovative therapies. In parallel, we critically reflect on the HTA process and highlight efforts in the training, education, and coordination required to enable meaningful public engagement and landmark achievements. Full article

Workplace violence (WPV) against healthcare workers (HCWs) in infectious disease hospitals, particularly in high-risk settings, remains a critical yet understudied occupational hazard. A mixed-methods study was conducted at a Chinese infectious disease hospital, combining quantitative surveys (N = 675) and semi-structured interviews (28 HCWs, 17 patients/families). Logistic regression was used to analyze WPV incidence and predictors, while a thematic analysis of interview data identified contextual drivers. Psychological violence (34.1%) was significantly more prevalent than physical violence (2.2%), with outpatient departments (44.1%) and temporary staff (OR = 1.72) at the highest risk. Qualitative themes revealed systemic triggers, including communication breakdowns, environmental stressors, and organizational gaps in safety protocols and reporting. This study addressed a critical gap by incorporating the perspectives of HCWs and patients, revealing that WPV perceptions vary due to differing expectations and experiences. From these results, the CARE (Communication, Advocacy, Respect, Education) framework proposes actionable strategies: standardized SBAR communication protocols, enhanced security protocols in high-risk units, and mandatory anti-violence training. These findings underscore the need to strengthen the occupational health system to mitigate WPV and to improve healthcare quality. Full article

Background/Objectives: Men have historically contributed significantly to mental health nursing, particularly in inpatient settings, where their presence has supported patient recovery and safety. Despite this legacy, men remain under-represented in the nursing workforce, and addressing this imbalance is critical to workforce sustainability. This study offers a novel contribution by exploring the lived experiences, motivations, and professional identities of men in mental health nursing, an area that has received limited empirical attention. The aim of the study is to examine the characteristics, qualities, and attributes of mental health nurses who are male, which contributes to their attraction to and retention within the profession. Methods: A qualitative interpretive inquiry was conducted among nurses who were male and either currently or previously employed in mental health settings. Two focus groups were conducted using semi-structured questions to explore their career pathways, motivations, professional identities, and perceived contributions. Thematic analysis was used to identify key themes and patterns in their narratives. Results: Seven participants, with 10–30 years of experience, participated. They had entered the profession through diverse pathways, expressing strong alignment between personal values and professional roles. Five themes emerged and centred on mental health being the heart of health, personal and professional fulfillment, camaraderie and teamwork, a profound respect for individuals and compassion, and overcoming and enjoying the challenge. Conclusions: Mental health nurses who are male bring unique contributions to the profession, embodying compassion, resilience, and ethical advocacy. Their experiences challenge traditional gender norms and redefine masculinity in health care. Fostering inclusive environments, mentorship, and leadership opportunities is essential to support their growth. These insights inform strategies to strengthen recruitment, retention, and the future of mental health nursing. Full article

CR is a cornerstone of secondary prevention for cardiovascular disease, offering well-established benefits across mortality, hospital readmission, functional capacity, and quality of life. Despite Class I guideline endorsements and decades of supporting evidence, CR remains vastly underutilized, particularly among women, racial and ethnic minorities, older adults, and individuals in low-resource settings. This review synthesizes the current evidence base for CR, with emphasis on disease-specific benefits across different cardiovascular diseases, and highlights recent data on its role in expanding populations, including patients with HFpEF, older adults, patients with advanced heart failure, and those undergoing transcatheter interventions. We also examine persistent barriers to CR access and participation, including system-level and referral limitations, as well as patient-level disparities by age, sex, race and ethnicity, and socioeconomic status. Building on this, we explore innovative delivery models and recent policy initiatives such as hybrid programs and reimbursement reform, all designed to expand access, promote equity, and modernize CR delivery. The findings underscore the need for continued investment, advocacy, and innovation to ensure equitable access to CR and its life-saving benefits across the full cardiovascular care continuum. Full article

Cyclin-dependent kinase (CDK)4/6 inhibitors have become a key component of adjuvant treatment for patients with hormone receptor-positive (HR+), human epidermal growth factor receptor 2-negative (HER2−) early breast cancer who are at high risk of recurrence. The addition of abemaciclib and ribociclib to standard endocrine therapy has demonstrated clinically meaningful improvements in invasive disease-free survival, supported by the monarchE and NATALEE trials, respectively. With expansion of patient eligibility for CDK4/6 inhibitors, multidisciplinary coordination among medical oncologists, surgeons, nurses, pharmacists, and other health care providers is critical to optimizing patient identification, monitoring, and management of adverse events. This expert guidance document provides practical recommendations for implementing adjuvant CDK4/6 inhibitor therapy in routine clinical practice, incorporating insights from multiple specialties and with patient advocacy representation. Key considerations include patient selection based on clinical trial data, treatment duration, dosing schedules, adverse event profiles, monitoring requirements, drug–drug interactions, and patient-specific factors such as tolerability, cost, and quality of life. This guidance aims to support Canadian clinicians in effectively integrating CDK4/6 inhibitors into clinical practice, ensuring optimal patient outcomes through a multidisciplinary and patient-centric approach. Full article

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a worldwide challenge. There are an estimated 17–24 million patients worldwide, with an estimated 60 percent or more who have not been diagnosed. Without a known cure, no specific curative medication, disability lasting years to being life-long, and disagreement among healthcare providers as to how to most appropriately treat these patients, ME/CFS patients are in need of assistance. Appropriate healthcare provider education would increase the percentage of patients diagnosed and treated; however, in-school healthcare provider education is limited. To address the latter issue, the New Jersey Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association (NJME/CFSA) has developed an independent, incentive-driven, learning program for students of the health professions. NJME/CFSA offers a yearly scholarship program in which applicants write a scholarly paper on an ME/CFS-related topic. The efficacy of the program is demonstrated by the 2024–2025 first place scholarship winner’s essay, which addresses the biological basis of ME/CFS and how the healthcare provider can improve the quality of life of ME/CFS patients. For the reader, the essay provides an update on what is known regarding the biological underpinnings of ME/CFS, as well as a medical student’s perspective as to how the clinician can provide care and support for ME/CFS patients. The original essay has been slightly modified to demonstrate that ME/CFS is a worldwide problem and for publication. Full article

Background/Objectives: Strengthening antimicrobial stewardship (AMS) programs is an invaluable intervention in the ongoing efforts to contain the threat of antimicrobial resistance (AMR), particularly in low-resource settings. This study evaluates the impact of the Telementoring, Education, and Advocacy Collaboration initiative for Health through Antimicrobial Stewardship (TEACH AMS), which uses the virtual Extension for Community Healthcare Outcomes (ECHO) learning model to enhance AMS capacity in Kenya, Ghana, and Malawi. Methods: A mixed-methods approach was used, which included attendance data collection, facility-level assessments, post-session and follow-up surveys, as well as focus group discussions. Results: Between September 2023 and February 2025, 77 virtual learning sessions were conducted, engaging 2445 unique participants from hospital-based AMS committees and health professionals across the three countries. Participants reported significant knowledge gain, and data showed facility improvements in two core AMS areas, including the implementation of multidisciplinary ward-based interventions/communications and enhanced monitoring of antibiotic resistance patterns. Along those lines, participants reported that the program assisted them in improving prescribing and culture-based treatments, and also evidence-informed antibiotic selection. The evidence of implementing ward-based interventions was further stressed in focus group discussions, as well as other strengthened practices like point-prevalence surveys, and development or revision of stewardship policies. Substantial improvements in microbiology services were also shared by participants, particularly in Malawi. Other practices mentioned were strengthened multidisciplinary communication, infection prevention efforts, and education of patients and the community. Conclusions: Our findings suggest that a virtual case-based learning educational intervention, providing structured and tailored AMS capacity building, can drive behavior change and strengthen healthcare systems in low resource settings. Future efforts should aim to scale up the engagements and sustain improvements to further strengthen AMS capacity. Full article

Person-centered navigation (PCN) in healthcare refers to a proactive collaboration among professionals, researchers, patients, and their families to guide individuals toward timely access to screening, treatment, follow-up, and psychosocial support. PCN—which includes professional, peer, and virtual guidance, is particularly crucial for rare cancers, where affected individuals face uncertainty, limited support, financial strain, and difficulties accessing relevant information, testing, and other services. The Canadian Cholangiocarcinoma Collaborative (C3) prioritizes PCN implementation to address these challenges in the context of Biliary Tract Cancers (BTCs). C3 uses a virtual PCN model and staffs a “C3 Research Navigator” who provides clinical and research navigation such as personalized guidance and support, facilitating access to molecular testing, clinical trials, and case reviews through national multidisciplinary rounds. C3 also supports a national network of BTC experts, a patient research registry, and advocacy activities. C3’s implementation strategies include co-design, timely delivery of support, and optimal outcomes across its many initiatives. Future priorities include expanding the C3 network, enhancing user engagement, and further integrating its innovative approach into routine care. Full article

Background: Social media platforms play a crucial role in contemporary healthcare, facilitating patient participation and enabling communication among healthcare workers, as well as serving as a platform for medical awareness and advocacy. Social media use among healthcare workers has increased to 91%, with 65% using it for health promotion purposes. Nonetheless, current studies have not properly and empirically explored its dimensions. Objectives: This study therefore examines social media dimensions and the productivity of healthcare workers. Methods: Leveraging the professional productivity theory and digital engagement theory, the study employs SPSS to analyze the gathered data through a partial least squares (PLS-SEM) approach to explore social media dimensions and productivity among healthcare workers in a Nigerian Tertiary Hospital. Based on a cross-sectional descriptive survey design and stratified random sampling method, 344 medical workers were analyzed. Findings: The study found that fear of missing out, information sharing, social influence, trust, and social media usage have a significant impact on the productivity of healthcare professionals. Conclusions: This research adds to the growing academic research on the capabilities of social media within the circular economic systems aimed at advancing healthcare delivery in developing economies. The research offers a method for maximizing the use of social media within healthcare settings to foster enhanced healthcare outcomes, particularly productivity. Full article

Background/Objectives: End-of-life care is a vital part of nursing education that has been overlooked until recent years. Advance care planning should be incorporated into the prelicensure nursing curriculum to build student nurses’ confidence in aiding patients and families with their preferred future care plans. Advance care planning tools, such as the Advance Health Care Directive (AHCD) and Five Wishes, provide experiential learning opportunities that bridge theoretical knowledge with real-world patient advocacy. In this study, students were asked to complete either the AHCD or Five Wishes document as though planning for their own end-of-life care, encouraging personal reflection and professional insight. Embedding these assignments into nursing education strengthens students’ confidence in facilitating end-of-life discussions. This study applied Kolb’s experiential learning theory, including concrete experience, reflective observation, abstract conceptualization, and active experimentation, to explore student nurses’ perspectives on the Advance Health Care Directive and Five Wishes assignments, as well as their understanding of end-of-life care. Methods: This study used an exploratory–descriptive qualitative design featuring one open-ended question to collect students’ views on the assignments. Results: The final sample comprised 67 prelicensure student nurses from Bachelor of Science and Entry-Level Master’s programs. The Advance Health Care Directive and/or Five Wishes assignment enhanced students’ understanding of end-of-life decision-making. Conclusions: It is essential to complete the assignment and immerse oneself in an end-of-life situation to grasp patients’ perspectives and concerns regarding when to engage in difficult conversations with their patients. Full article

Background/Objectives: Clinical Research Nurses (CRNs) have emerged as pivotal actors in the conduct, coordination, and oversight of clinical trials globally. Over the past three decades, the role of the CRN has evolved in response to the increasing complexity of research protocols, ethical standards, and regulatory frameworks. Originating as task-oriented support figures, CRNs have progressively assumed broader responsibilities that include patient advocacy, protocol integrity, ethical vigilance, and interprofessional coordination. By mapping the global literature on CRNs, this review will examine how their role has been defined, implemented, and evaluated over the past three decades. Methods: A scoping review was conducted using JBI methodology and PRISMA-ScR guidelines. The search covered the peer-reviewed and gray literature from 1990 to 2024 across major databases. Data analysis combined traditional extraction with topic modeling, Multiple Correspondence Analysis, and k-means clustering to identify key themes. Results: From the 128 included studies, four major themes emerged: clinical trial management, role perception and team integration, professional competencies and development, and systemic barriers. Despite formal competency frameworks, CRNs face inconsistencies in role recognition, unstable contracts, and limited career pathways. Emotional strain and professional isolation are recurrent. Over time, their functions have evolved from task execution to broader responsibilities, including advocacy and ethical oversight. However, no studies reported patient-level outcomes, revealing a critical gap in the evidence base. Conclusions: CRNs play a vital but undervalued role in clinical research. Persistent structural challenges hinder their development and visibility. Enhancing institutional support and generating outcome-based evidence are necessary steps toward fully integrating CRNs into research infrastructures. Full article

The evolving role of paramedics presents a unique opportunity to enhance care for people who use drugs, a population disproportionately affected by systemic barriers and inequities. In fragmented healthcare systems, paramedics are well-positioned to improve access through initiatives such as social prescribing and harm reduction. This theory-driven commentary explores how Network Theory and Actor Network Theory provide valuable theoretical underpinnings to conceptualize and strengthen the integration of paramedics into care networks. By emphasizing the centrality of paramedics and their connections with both human and non-human actors, these theories illuminate the relational dynamics that influence effective care delivery. We argue that leveraging paramedics’ positionality can address gaps in system navigation, improve patient outcomes, and inform policy reforms. Future work should examine the roles of other key actors, strengthen paramedic advocacy, and identify strategies to overcome barriers to care for people who use drugs. Full article

Background/Objectives: Many Canadians experience challenges navigating the healthcare system during their cancer care. Nurse navigators are uniquely positioned to support patients with their clinical expertise in oncology and patient care, but they have not been widely implemented. This study aimed to examine the impact of nurse navigators and barriers to successful implementation of a nurse navigator program. Methods: MEDLINE, EMBASE, and Web of Science databases were searched for articles examining the role of nurse navigators in cancer care. The data was extracted on study design, patient characteristics, nurse navigators’ responsibilities, outcomes, barriers to success, and recommendations for implementing nurse navigator programs. Content analysis was used to identify common themes. Results: Of 1787 articles identified, 44 articles met the inclusion criteria and underwent data extraction. Nurse navigator responsibilities included patient education, psychosocial support, clinical assessment, care coordination, patient advocacy, and improving workflows. Most studies reported significant benefits from nurse navigator programs, including patient-centered care, satisfaction with the healthcare system, reduced patient distress, healthcare provider support, and enhanced patient monitoring. Barriers included a lack of understanding of the role, overwhelmed nurse navigators, and inefficient healthcare system workflows. Recommendations for future nurse navigator programs include providing personalized support to patients, encouraging integrated healthcare teams, and permanent funding. Conclusions: Nurse navigator programs improve cancer patients’ experiences and the efficiency of cancer care delivery. Implementation necessitates integration into the healthcare team and longitudinal financial and professional support of nurse navigators. Full article