Health System Research Articles

THE CARE SCENARIO IN PRIMARY HEALTH CARE FOR THE BLACK POPULATION

This research aims to analyze inequalities in access to health care for the black population in Primary Health Care (PHC) in Brazil, highlighting the impact of structural and institutional racism on care practices. The overall objective is to analyze the current scenario of care and health promotion in primary care for the black population. The research methodology was a qualitative and descriptive literature review. The research shows that PHC, although it is the gateway to the Unified Health System (SUS), often fails to equitably meet the needs of the black population, resulting in worse health and quality of life indicators. The conclusion points out that it is urgent to implement inclusive public policies and anti-racist practices, in addition to promoting the continued training of health professionals with a focus on the specificities of the health of the black population. The active participation of this population in the formulation of policies and the encouragement of research on their health conditions are essential to promote comprehensive and equitable health.

Molecular Characterization of Multidrug-Resistant and Hypervirulent New Delhi Metallo-Beta-Lactamase Klebsiella pneumoniae in Lazio, Italy: A Five-Year Retrospective Study

Background/Objectives: Antimicrobial resistance represents a challenge to public health systems because of the array of resistance and virulence mechanisms that lead to treatment failure and increased mortality rates. Although for years the main driver of carbapenem resistance in Italy has been the Klebsiella pneumoniae KPC carbapenemase, recent years have seen an increase in VIM and NDM metallo-beta-lactamases (MBLs). We conducted a five-year survey of New Delhi Metallo-beta-Lactamase (NDM)-producing Klebsiella pneumoniae (NDM-Kpn) clinical isolates from the Lazio region, Italy; the study aimed to elucidate the molecular mechanisms underpinning their resistant and virulent phenotype. Methods: Antimicrobial susceptibility was evaluated by automated systems and broth microdilution. In silico analysis of acquired resistance and virulence genes was performed using whole-genome sequencing (WGS), molecular typing through MLST, and core genome multi-locus sequence typing (cgMLST). Conclusions: A total of 126 clinical NDM-Kpn isolates were collected from 19 distinct hospitals in the Lazio region. Molecular analysis highlighted the existence of NDM-1 (108/126) and NDM-5 (18/126) variants, 18 Sequence Types (STs), and 15 Cluster Types (CTs). Notably, 31/126 isolates displayed a virulence score of 4, carrying ybt, ICEKp, iuc, and rmp genes. This study identified a variety of NDM-Kpn STs, mainly carrying the blaNDM-1 gene, with a significant number linked to high-risk clones. Of these isolates, 24.6% showed high-level resistance and virulence, emphasizing the risk of the spread of strains that combine multi-drug-resistance (MDR) and virulence. Proactive surveillance and international collaborations are needed to prevent the spread of high-risk clones, as well as further research into new antimicrobial agents to fight antibiotic resistance.

THE IMPACT OF TELEMEDICINE ON ACCESS TO PRIMARY CARE

The COVID-19 pandemic has driven the implementation of telemedicine as a solution for maintaining access to healthcare, transforming the primary care landscape in many parts of the world. In Brazil, telemedicine has established itself as an essential tool for overcoming geographical and social barriers, facilitating access to basic care for populations that traditionally faced difficulties in accessing health services. This study seeks to investigate the impact of telemedicine on access to primary care, analyzing its main challenges and opportunities in the context of post-pandemic primary care. This study seeks to analyze the impact of telemedicine on access to primary care, exploring the main challenges and opportunities that arise with this modality of care. It also aims to identify practices and policies that can strengthen the implementation of telemedicine in Primary Care, ensuring that remote care is effective, safe and inclusive. This is a literature review, based on a qualitative approach, using the Scielo, Google Scholar and PubMed databases. To refine the research, the health descriptors “telemedicine”, “primary care”, “COVID-19”, and “equity in access to health” were selected, with a time frame between 2021 and 2023. Through a literature review, the study explores recent data on telemedicine in primary care, focusing on the main opportunities it offers, such as improved access and efficiency of services, as well as the challenges, including limited technological infrastructure in poor regions, privacy and confidentiality issues, and the need for adequate training for health professionals. Telemedicine enables more agile care and coverage of a larger population, but still faces obstacles related to digital accessibility and maintaining quality and continuity of care, especially for vulnerable groups. Telemedicine has therefore proved to be a strategic tool for expanding access to primary care, offering a viable alternative for reducing gaps in primary care. However, in order to maximize its impact, it is essential to overcome the technological challenges, guarantee information security and train health professionals in this new type of care. The continued use of telemedicine in the post-pandemic context presents an opportunity to strengthen the Unified Health System (SUS) in Brazil, expanding the reach of primary care and promoting greater equity in access to health.

AUTISM DIAGNOSIS

This document results from a theoretical study, the objective of which was to discuss the importance of conducting high-quality diagnoses of Autism Spectrum Disorder (ASD) and to compare how this screening process is conducted through the Unified Health System (SUS) and specialized private clinics. The research was conducted through a literature review and case study analysis to assess the waiting time, cost, diagnostic quality, and follow-up care after the screening process had been completed. Autism is a neurodevelopmental condition characterized by significant deficits in communication, selective eating, and social interaction, as well as repetitive patterns of behaviors, activities, and/or interests.

The uneven geography of the health system and its effect on the individual probability of death by COVID-19

The uneven geography of the health system and its effect on the individual probability of death by COVID-19

Maternal and newborn health prioritization in Yobe State, Nigeria: analysis of stakeholders' perspective.

Maternal and newborn mortality and morbidity in conflict-affected northeastern areas of Nigeria, such as Yobe State, are disproportionately higher than those in the rest of the country. There is limited evidence on the factors that influence maternal and newborn health (MNH) policymaking and implementation in this region, particularly with respect to the impact of conflict and context-specific issues. This study explores the political, economic and health system factors that drive the prioritization of MNH policies in Yobe State. The aim of this study was to elucidate the conflict-related factors influencing MNH outcomes, which could inform targeted interventions to improve MNH. The study is a descriptive case study that relies on multiple data sources and is guided by the Health Policy Analysis Triangle. We reviewed national and subnational research, technical reports and policies related to reproductive health and the MNH in Nigeria since 2010. Following stakeholder mapping, we identified and invited prospective participants in the MNH policymaking space. Nineteen stakeholders from the government, civil society and nongovernmental organizations, donor agencies, and public and private sector health providers in Yobe State participated in the semistructured in-depth interviews. Data were collected from November 2022 through January 2023 and were thematically analysed via Dedoose software. MNH services in Yobe State have received considerable attention through initiatives such as the National Midwifery Service Scheme, free MNH services, training of midwives with deployment to rural areas, and health facility renovations. The effective implementation of MNH services and policies faces challenges due to insufficient funding, and sustainability is hampered by changes in governance and political transitions. The Boko Haram insurgency exacerbated the humanitarian crisis in Yobe State and disrupted MNH services due to the displacement of populations and the decline in the number of health workers. Additionally, sociocultural and religious beliefs hinder timely access to and utilization of MNH services. Although policies and guidelines for MNH services exist in the state, they are inadequately disseminated to health providers, which affects their effective implementation across facilities. Collaboration and intersectoral coordination platforms exist, but competition and rivalries among unions, political entities, and implementing agencies sometimes impede progress. Enhancing MNH services in Yobe state requires increased commitment for funding through the Northeast Development Commission rehabilitation fund; strengthening the health workforce, safety and retention plan; promoting gender inclusivity within the health sector; and addressing sociocultural barriers to women's health-seeking behaviors. Concrete, time-bound plans for policy dissemination are necessary to ensure effective service implementation.

Determining skill mix and optimal multidisciplinary team composition: A scoping review.

Holistic care models aligned to population care needs are needed to help leaders shed pre-existing mindsets when determining skill mix and Multidisciplinary Team (MDT) composition. Using a PRISMA flowchart, a narrow eligibility criterion, and a research question, this scoping review resulted in 9 frameworks/models published between January 2000 and September 2023. Analysis showed common methodological elements such as a population needs-based approach, a systematic process, engagement, three or more professions reporting task or competency level analysis, change advocacy, and reliance on population and workforce supply data. Key system enablers were sponsorship, access to population needs-based and workforce supply data, a learning management system for MDT development, and health human resource policies and governance to drive health system redesign to distribute an equitable workforce. This scoping review offers health leaders and policy-makers options and next-step considerations to inspire fresh thinking for making evidence-informed decisions about skill mix and MDT composition.

Mpox Resurgence: A Multifaceted Analysis for Global Preparedness

This study provides an in-depth analysis of mpox, encompassing its history, characteristics, epidemiology, diagnostics, treatment options, and the ongoing evolution of the virus and its transmission dynamics. Mpox, though once successfully eradicated, has re-emerged with new modes of transmission and a broader host range. Genomic analyses have revealed the virus’s adaptability, posing challenges for diagnostics and vaccine efficacy. The epidemiology has shifted from sporadic zoonotic transmission in rural Africa to a significant presence in urban areas, particularly impacting high-risk populations. Advancements in diagnostics and therapeutics offer hope, but challenges persist. This work underscores the critical need for enhanced surveillance, vaccination strategies, and continued research to bolster global health systems and preparedness for future outbreaks.

The negative impact of the COVID-19 pandemic on breast cancer care in Brazil: a time series study in regions with different human development indices

BackgroundThe impact of the COVID-19 pandemic on breast cancer care across Brazilian regions with varying Human Development Index (HDI) levels remains unclear. This study evaluates the pandemic’s effects on screening mammograms, tumor staging at diagnosis, and treatment initiation in the Brazilian Public Health System between 2017 and 2022, focusing on regions with different HDI levels.MethodsThis ecological time series study uses an inflection point regression model and monthly percentage change (MPC) to analyze an open-access Brazilian Public Healthcare System dataset. The study focuses on trends and variations in these variables among women aged 50–69 in three state groups classified by HDI: Group A (very high), Group B (medium), and Group C (high).ResultsThe average monthly rate of screening mammograms was highest in Group A (10.70) and lowest in Group B (8.38). At the onset of the COVID-19 pandemic, screening rates dropped significantly, with the most significant decline in Group B (58.6% decrease) and the smallest in Group A (45.7% decrease), lasting for three months. Subsequently, this variable recovered until December 2022 but was insufficient to restore the total series MPC to pre-pandemic levels. Group B had the lowest average rate of early-stage (0-II) diagnoses (2.88), while Group C had the highest (3.68). Early-stage diagnoses declined in the first three months of the pandemic, followed by a partial recovery that was insufficient to restore the pre-pandemic MPC levels. The proportion of advanced-stage diagnoses was highest in Group B (49.02%) and lowest in Group A (45.97%). The pandemic maintained the upward trend of advanced-stage (III-IV) diagnoses across all groups in the total time series. The average proportion of treatments initiated after 60 days of diagnosis was above 60% across all groups, with Group B at 64.50%. This variable began to rise 3 to 4 months after the pandemic and continued increasing until December 2022, with a greater intensity than the pre-pandemic period across all groups.ConclusionThe COVID-19 pandemic reduced breast cancer screening and early diagnosis in Brazil, leading to more advanced cases and treatment delays across all regions, with varying impacts according to regional HDI levels.

Clinic-Level Predictors of Psychotherapy Dosage in the Military Health System.

This study aimed to describe the demand for, supply of, and clinic processes associated with behavioral health care delivery in the Military Health System and to examine the clinic-level factors associated with receipt of a minimally adequate dosage of psychotherapy. This retrospective study used administrative behavioral health data from eight military treatment facilities (N=25,433 patients; N=241,028 encounters) that were participating in a larger implementation study of evidence-based psychotherapy for posttraumatic stress disorder. Minimally adequate dosage of psychotherapy was defined in two ways: at least three sessions within a 90-day period and at least six sessions within a 90-day period. The authors then used a path model to examine clinic-level factors hypothesized to predict psychotherapy dosage, including care demand, supply, and processes. Patients had an average of 2.5 psychotherapy appointments per quarter. Wait times for intake, between intake and the first psychotherapy session, and between follow-up sessions all averaged 17 days or longer. Path modeling showed that a higher patient-to-encounter ratio was associated with a longer wait time between follow-up psychotherapy appointments. In turn, a longer wait time between appointments was associated with a lower probability of receiving an adequate dosage of psychotherapy. However, a greater proportion of care delivered in groups was associated with a greater probability of receiving at least six sessions of psychotherapy. Receipt of a minimally adequate dosage of psychotherapy in the Military Health System is hindered by clinic staffing and workflows that increase wait times between follow-up psychotherapy appointments.

CBCT-based online adaptive radiotherapy of the prostate bed: first clinical experience and comparison to nonadaptive conventional IGRT.

Conventional image-guided radiotherapy (IGRT) of the prostate bed is challenged by the varying anatomy due to dynamic changes of surrounding organs such as the bladder and rectum. This leads to changed dose coverage of target and surrounding tissue. The novel online adaptive radiotherapy (oART) aims to improve target coverage as well as reduce dose exposure to surrounding healthy tissues by daily reoptimization of treatment plans. Here we set out to quantify the resulting changes of this adaptation for patients and treatment team. Atotal of 198 fractions of radiotherapy of the prostate bed (6patients) were treated using oART with the Ethos accelerator (Varian Medical Systems, Palo Alto, CA, USA). For each fraction, volumes and several dose-volume parameters of target volumes and organs at risk were recorded for the scheduled plan (initial plan, recalculated based on daily cone beam computed tomography [CBCT]), the adapted plan, and the verification plan, which is the dose distribution of the applied plan recalculated on the closing CBCT after the adaptation process. Clinical acceptability for all plans was determined using given dose-volume parameters of target volumes. Additionally, the time needed for the adaptation process was registered and compared to the time required for the daily treatment of five conventional IGRT patients. Volumes of target and organs at risk (OAR) exhibited broad variation from day to day. The differences in dose coverage D98% of the clinical target volume (CTV) were significant through adaptation (p < 0.0001; median D98% 97.1-98.0%) and further after verification CBCT (p < 0.001; median D98% 98.1%). Similarly, differences in D98% of the planning target volume (PTV) were significant with adaptation (p < 0.0001; median D98% 91.8-96.5%) and after verification CBCT (p < 0.001; median D98% 96.4%) with decreasing interquartile ranges (IQR). Dose to OAR varied extensively and did not show aconsistent benefit from oART but decreased in IQR. Clinical acceptability increased significantly from 19.2% for scheduled plans to 76.8% for adapted plans and decreased to 70.7% for verification plans. The scheduled plan was never chosen for treatment. The median time needed for oART was 25 min compared to 8 min for IGRT. Target dose coverage was significantly improved using oART. IQR decreased for target coverage as well as OAR doses indicating higher repeatability of dose delivery using oART. Differences in doses after verification CBCT for targets as well as OAR were significant compared to adapted plans but did not offset the overall dosimetric gain of oART. The median time required is three times higher for oART compared to IGRT.

Physician-Patient Narrative Re-discovered from Overseas Traditional Chinese Medicine Practices by Non-Chinese Physicians for Non-Chinese Patients

Abstract: In the past decade, the physician-patient narrative has been revisited and appreciated in both the West and the East because of the negative impact of biochemical medicine in the past two centuries in healthcare. Biochemical medical system simply marginalized physicians and patients(Jewson, 2009). More research and practice of "doctor's benevolence" and "humanistic medicine" have called for the return of the physician-patient narrative. This paper interviewed a few non-Chinese overseas Traditional Chinese Medicine (TCM) practitioners, whose clients were non-Chinese, too. We adopted discourse analysis to explore our data. We found that they actively engaged in physician-patient narrative with localized interpretation of TCM. We believe such a return to basic physician-patient narrative is caused by fundamental needs for physician-patient narrative coincidentally goes along with loose control of TCM practices in the studied countries. This discovery can inspire further study on re-establishing physician-patient narratives in each healthcare institution by re-positioning biochemical medicine.

Early Effects of Information Revolution Interventions on Health Information System Performance in Ethiopia.

Health information systems (HISs) are essential to a country's health system as they provide critical support to health policymaking, management, financing, and service delivery. A well-functioning HIS should produce timely and reliable data that are available and easily accessible to decision-makers throughout the health system. Ethiopia has transitioned from a fragmented, paper-based health management information system (HMIS) to a harmonized, digital system used at points of collection and service delivery.In 2016, the Federal Ministry of Health (MOH) launched the Information Revolution (IR), a transformative agenda aimed at enhancing the culture of data use, scaling priority HIS tools and systems, and strengthening HIS governance. Between 2016 and 2022, the MOH, Data Use Partnership, and other partners implemented a series of IR interventions that supported this agenda. These interventions included deploying and harmonizing digital HIS systems; strengthening HIS leadership, coordination, and governance; implementing the IR pathway strategy; enhancing capacity through supportive supervision, mentorship, and training; and improving performance monitoring teams. This article aims to synthesize the key HIS interventions implemented in Ethiopia as part of the IR and document the effects of these interventions on HIS performance.Early studies indicate promising improvements in HIS performance across health facilities in Ethiopia. However, challenges remain. To ensure sustainable progress, it is essential to continue addressing key challenges, such as system interoperability, HIS workforce, and capacity for data use at all levels. By building on the successes of the first Health Sector Transformation Plan and addressing these gaps, Ethiopia can advance its vision of a robust, data-driven health system capable of improving health outcomes and driving evidence-based decision-making.

Role of traditional healers in the management of microbial keratitis in eastern Nepal

Background Microbial Keratitis (MK) is a leading cause of corneal blindness due to infection and its consequences, with a higher incidence in resource-limited nations. Hospital-based patient records from different parts of Nepal suggest patients often use traditional eye medicine to treat MK. Traditional healers (TH) within the community are often the first point of care for MK management. Little is known of their practice, perceptions, and knowledge around MK management. We aimed to understand the role of traditional healers in the management of MK in south-eastern Nepal. Methods A cross-sectional, mixed method, descriptive study was conducted in the Siraha district of Nepal. A total of 109 traditional healers consented to participate in a survey of knowledge, attitude, and practices. Some participants were also invited to participate in in-depth interviews and focus group discussions. Interviews and focus groups were conducted and recorded in the Maithili language by a native speaking interviewer and transcribed into English. Descriptive analysis was performed for the survey. Data saturation was considered the endpoint for qualitative data collection, and a thematic was analysis applied. Results Traditional healers believe that infection of the eye can be caused by trauma, conjunctivitis, or evil spirits. They were unclear about differentiating MK from other eye conditions. They provided various types of treatment. Some were confident that they could treat severe ulcers that had not responded to medical therapy, while others thought treating larger diameter ulcers would be difficult. Although there were mixed responses in referring patients with MK, the majority of TH were willing to refer. Conclusion In a weak health system, traditional healers may help address barriers to healthcare access and reduce delays to definitive care, upon integration into the formal health system and referral pathway.

The Evolution in Dementia Caregiving Research: NIA's Catalyst Role.

This article celebrates the National Institute of Aging (NIA)'s successes over the past fifty years in advancing the science base informing the need for and response to dementia caregiving. In parallel with other public and private efforts, insightful NIA leadership supported by funding initiatives established the field of dementia caregiving research. In support of the health and well-being of family caregivers, NIA was a catalyst of innovation that led to numerous evidence-based caregiving interventions informed by basic research on care tasks and consequences. As evidence of the impending burden of dementia care on US families mounted, NIA-funded multidisciplinary collaboratives of researchers generated comprehensive models of family caregiving across diverse populations. Today, the dementia caregiving evidence base is shaping public policy and making possible dementia caregiving support services in health systems and community-based organizations. NIA continues to support the scientific study of dementia caregiving with a collaboratory of leading scientists and by making available state-of-the-art datasets and encouraging standardized research methodologies. NIA's leadership in the field of dementia caregiving research has never been more significant as the number of persons living with dementia in the US approaches 7 million, and the value of family caregiving is estimated to be $350 billion.

Lipoprotein (a) Testing in Patients With Atherosclerotic Cardiovascular Disease in 5 Large US Health Systems.

Lipoprotein (a) is an independent risk factor for atherosclerotic cardiovascular disease. However, lipoprotein (a) testing remains variable and it is unclear what factors influence testing and if testing changes clinical management. A retrospective study using electronic medical record data from 5 health systems identified an atherosclerotic cardiovascular disease cohort divided into those with and without a lipoprotein (a) test between 2019 and 2021. Baseline characteristics and lipid-lowering therapy patterns were assessed. Multivariable regression modeling was used to determine factors associated with lipoprotein (a) testing. Among 595 684 patients with atherosclerotic cardiovascular disease, only 2587 (0.4%) were tested for lipoprotein (a). Those who were older or Black individuals were less likely to have lipoprotein (a) testing, while those with familial hypercholesterolemia, ischemic stroke/transient ischemic attack, peripheral artery disease, prior lipid-lowering therapy, or low-density lipoprotein cholesterol ≥130 mg/dL were more likely to be tested. Those with a lipoprotein (a) test, regardless of the lipoprotein (a) value, were more frequently initiated on any statin therapy (30.3% versus 10.6%, P < 0.001), ezetimibe (7.65% versus 0.8%, P < 0.001), or proprotein convertase substilisin/kexin type 9 inhibitor (6.7% versus 0.3%, P < 0.001) compared with those without a test. Those with an elevated lipoprotein (a) level more frequently initiated ezetimibe (11.5% versus 5.9%, P < 0.001) or proprotein convertase substilisin/kexin type 9 inhibitor (10.9% versus 4.8%, P < 0.001). Lipoprotein (a) testing in patients with atherosclerotic cardiovascular disease is infrequent, with evidence of disparities among older or Black individuals. Testing for lipoprotein (a), regardless of level, is associated with greater initiation of any lipid-lowering therapy, while elevated lipoprotein (a) is associated with greater initiation of nonstatin lipid-lowering therapy. There is a critical need for multidisciplinary and inclusive approaches to raise awareness for lipoprotein (a) testing, and its implications on management.

Am I attached? A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada

BackgroundHaving a primary care provider is associated with better care experiences and lower care costs. In 2021, INSPIRE-PHC released Primary Care Data Reports - publicly available summaries of administrative billing data about how populations in each of Ontario’s 60 health teams use primary care services. Given the characterization of Canadian primary care systems as ‘in crisis’, publicly available data about primary care at the regional level presented a significant opportunity for knowledge mobilization. An understandable resource could ground the public conversation about primary care access in data. Recognizing the role that lived experience plays in ensuring the public understands research findings, a partnership between patient advisors, Ontario Health Team representatives, researchers, and trainees was established to co-produce public-facing infographics based on primary care data.MethodsEvidence-based guidelines for public health infographic creation and elements of transformative action research guided a six-meeting process to engage up to 14 patient advisors, three Ontario Health Team staff and two primary care trainees. Patient advisors were affiliated with a provincial patient-oriented primary health care research group or a Hamilton-based Ontario Health Team. Ninety-minute meetings were conducted virtually, and notes were shared with attendees to ensure they accurately reflected the conversation. Two consultations with Ontario Health Team-affiliated primary care providers provided direction and ensured project outputs aligned with local priorities.ResultsProject partners shared feedback on draft infographics, audience identification, priority elements from Primary Care Data Reports to include in the infographics, and aesthetic features (e.g., headings, colour scheme, charts). Project partners felt the most important metrics to convey to the public were those that simultaneously reinforced the benefits of primary care on individual health outcomes and health system costs.ConclusionsPatient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Our approach to engaging patients prevented both oversimplification and unnecessary complexity in a public-facing visual about attachment to primary care.

Perceived Social Support and Depression, Anxiety and Stress in Pregnant Women Diagnosed With Foetal Anomaly.

To examine the relationship between perceived social support level and depression, anxiety and stress in pregnant women diagnosed with foetal anomaly. This descriptive and correlational study was conducted in an advanced prenatal evaluation unit of a university hospital between December 2021 and May 2022. The study data collected from 131 pregnant women through a personal information form, depression, anxiety and stress scale (DASS-42) and multidimensional scale of perceived social support (MSPSS). Most of the pregnant women were in the second trimester of pregnancy, and more than half had been advised by a healthcare professional to terminate their pregnancy. Overall, the pregnant women reported moderate levels of social support, while their depression, anxiety and stress levels varied. There was a weak negative correlation between perceived social support from family, friends and multidimensional sources with stress, but the effect rate was low. Most pregnant women diagnosed with foetal anomaly have normal levels of depression, stress and anxiety. There is a weak negative correlation between perceived social support and stress, with family and friend support affecting stress levels at a low rate. Professional support should be provided, and both the woman's mental health and social support mechanisms must be evaluated. This study highlights the importance of social support in managing stress among pregnant women with foetal anomalies. While most women had normal levels of depression, anxiety and stress, increased social support from family and friends was shown to reduce stress. The findings underscore the need for healthcare professionals to assess and strengthen mental health and social support systems in this vulnerable population, informing interventions to improve psychosocial outcomes. This descriptive and correlational study adhered to the CONSORT guidelines for reporting non-randomised trials. No patient or public contribution.

Disparities in Patient Portal Activation and Usage at a Large Pediatric Academic Institution.

Access to personal medical information promotes patient understanding of health issues and enables patient self-advocacy of healthcare needs. The advent of electronic medical record systems and the 2016 21st Century CURES Act promoted and encouraged patient access to personal medical information, yet technology-dependent modalities have often disadvantaged certain communities. We sought to evaluate whether disparities existed in access to patient portals at our institution, the main pediatric care provider in an area serving one million children. We evaluated the activation of patient portal accounts at our institution over the past decade (2010-2021). Portal activation data were analyzed by ethnic background and language preference and income information available based on primary home access location. Further, we evaluated portal activation rates over time and across institutional interventions. A logistic regression model was used to identify important demographic associations with portal account status. Over 1 million patients were served at our pediatric institution over the study period with 47.7% having ever activated their patient portals. Univariate analyses and ultimately logistic regression modeling demonstrated significant differences in portal activation by ethnicity (odds ratio (confidence interval):1.36 (1.34, 1.37)), language preference (1.39 (1.37, 1.40)), and median household income (1.00001 (1.00001, 1.00001)). Interim interventions were successful in improving portal activation rates. Overall, electronic medical record portal activation was less prevalent among Hispanic, non-English speakers, and patients living in communities with lower median household income. Opportunities for interventions exist to reduce healthcare disparities in these underserved communities.

Factors influencing the ability of family caregivers of Alzheimer’s patients within Iranian families to continue and persist in their caregiving roles: a qualitative study

BackgroundUnderstanding the motivations driving family members to continue caring for individuals with Alzheimer’s disease is crucial for enhancing social support programs within community health systems. This study specifically explores the factors influencing Iranian family caregivers’ ability to persist in their caregiving roles.MethodsThis qualitative study was conducted using conventional content analysis with 22 participants in 2022 in Babol (a city in northern Iran). The inclusion criteria for the study included caregivers of Alzheimer’s patients who had been the primary caregivers for at least one year for patients with a confirmed diagnosis of Alzheimer’s disease. The sampling method was purposive, ensuring maximum variation in social position, demographic status, and stages of Alzheimer’s disease after the onset of symptoms. In this research, data were collected from caregivers of Alzheimer’s patients through semi-structured interviews and in-depth individual interviews. The data were analyzed using MAXQDA software.ResultsOne category and four subcategories were identified to explain the continuity of the caring role in family caregivers of Alzheimer’s patients. The category was “on the Fence of the Caring Role.” The subcategories included Commitment to Care (Being Determined, Being Indebted, Feeling Dutiful), Coercion to Care (Giving in to the Caring Role Due to Family Requirements, Patient Care Due to Financial Problems), Socio-Cultural Beliefs and Concerns (Spiritual and Religious Tendencies, Social Stigma and Social Fears), and Attachment and Love for the Patient (Feeling Pity, Feeling Nostalgia for Kinship).ConclusionFamily caregivers are deeply engaged in their roles, often feeling trapped by various pressures. Recognizing these dimensions can inform policymakers and health practitioners in developing targeted interventions, such as respite care programs, financial support, and community resources, aimed at alleviating caregiver burden and enhancing the quality of care for patients. By addressing the complexities of the caregiver experience, effective strategies can be implemented to support both patients and their caregivers, ultimately improving health outcomes within the community.