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How Can We Improve Personal Care Interactions to Reduce Care Refusals From People With Dementia? A Realist Synthesis

ABSTRACT

Aim

To identify strategies and mechanisms of interventions between caregivers and people with dementia that contribute to reducing refusals of care and determine how they work, in which contexts, why and for whom.

Design

Realist synthesis.

Methods

There were three stages: (1) initial programme theory development and prioritisation through assessing video-recorded personal care interactions and interview transcripts; scoping the literature and team discussions, (2) literature search, review and synthesis and (3) realist interviews with stakeholders and refinement of evidence-based programme theories.

Data Sources

Searches were conducted in MEDLINE, EMBASE, PsycINFO, CINAHL Ultimate, Cochrane CENTRAL Register of Controlled Trials and Web of Science; date range: 2000–2024.

Results

A total of 71 sources were included in the synthesis, and interviews with 15 stakeholders. Eight programme theories were generated, evidenced and refined, each incorporating multiple caregiver strategies. The overarching mechanism which made people with dementia more likely to accept assistance with personal care was trusting the caregiver and feeling safe. Seven mechanisms fed into this: a sense of control, positive connection, care feeling manageable, working together, engaging with the care activity (or something non-care related), comfort and needs being known and addressed.

Conclusion

Refusals of care from people with dementia can be reduced by multiple caregiver strategies related to communication, approach, the type of care offered and the care interaction process. Mechanisms reflect relational aspects: the quality of the caregiver/person partnership and making the person with dementia feel safe.

Practice Implications

Our findings provide programme theories and practical care strategies which could be helpful for those, such as nurses, working to improve personal care practices for people with dementia.

Patient Contributions

Public representatives advised the study throughout, providing advice on initial programme theories, evidence-based programme theories and synthesised stakeholder evidence.

Reporting Method

This synthesis uses the publication standards for realist synthesis (RAMESES 1).

Trial Registration

PROSPERO: 2024 CRD42024496072

Assessing health system preparedness from trends and time delays in the management of myocardial infarctions during the COVID-19 pandemic in India: a multicentre retrospective cohort study

Por: Menon · J. C. · MS · A. · S · H. · Janakiram · C. · James · A. · Sreedevi · A. · Menon · G. R. · John · D. · Cherian · J. J. · V · V. · Abhaichand · R. K. · Punnoose · E. P. · BS · A. · Abraham · M. · Thomas · P. · Pedada · C. · Govindan · U. · Mohan · B. · Pisharody · S. · Devasia · T. · Seba
Objectives

This study aimed to analyse the number of myocardial infarction (MI) admissions during the COVID-19 lockdown periods of 2020 and 2021 (March 15th to June 15th) and compare them with corresponding pre-pandemic period in 2019. The study also evaluated changes in critical treatment intervals: onset to door (O2D), door to balloon (D2B) and door to needle (D2N) and assessed 30-day clinical outcomes. This study examined MI care trends in India during the COVID-19 lockdown period, irrespective of patients’ COVID-19 infection status.

Design

Multicentre retrospective cohort study

Setting

Twenty-three public and private hospitals across multiple Indian states, all with 24/7 interventional cardiology facilities.

Participants

All adults (>18 years) admitted with acute myocardial infarction between March 15 and June 15 in 2019 (pre-pandemic), 2020 (first lockdown) and 2021 (second lockdown). A total of 3614 cases were analysed after excluding duplicates and incomplete data.

Primary outcomes

Number of MI admissions, median O2D, D2B and D2N times.

Secondary outcomes

30-day outcomes including death, reinfarction and revascularisation.

Results

MI admissions dropped from 4470 in year 2019 to 2131 (2020) and 1483 (2021). The median O2D increased from 200 min (IQR 115–428) pre-COVID-19 to 390 min (IQR 165–796) in 2020 and 304 min (IQR 135–780) in 2021. The median D2B time reduced from 225 min (IQR 120–420) in 2019 to 100 min (IQR 53–510) in 2020 and 130 min (IQR 60–704) in 2021. Similarly, D2N time decreased from 240 min (IQR 120–840) to 35 min (IQR 25–69) and 45 min (IQR 24–75), respectively. The 30-day outcome of death, reinfarction and revascularisation was 4.25% in 2020 and 5.1% in 2021, comparable to 5.8% reported in the Acute Coronary Syndrome Quality Improvement in Kerala study.

Conclusion

Despite the expansion of catheterisation facilities across India, the country continues to fall short of achieving international benchmarks for optimal MI care.

Lung and cardiac ultrasound for respiratory distress in the elderly: study protocol of the LUC REED stepped-wedge cluster randomised trial

Introduction

Dyspnea is a common chief complaint leading to emergency department (ED) visits. Multiple conditions may cause or be associated with dyspnoea, including bacterial pneumonia, acute heart failure (AHF), exacerbation of chronic obstructive pulmonary disease (COPD) or asthma and pulmonary embolism. Each of these diagnoses has a specific treatment recommended by international guidelines. Inappropriate treatment in the ED is more frequent among elderly patients and is independently associated with in-hospital mortality. Point-of-care ultrasound is immediately available at the bedside. Lung and cardiac ultrasound (LuCUS) offers excellent diagnostic accuracy for bacterial pneumonia, AHF and COPD exacerbations, even in elderly patients. The primary objective of the LUC REED trial is to evaluate the impact of a LuCUS-guided strategy versus standard care on reducing inappropriate treatment of dyspnoea in elderly ED patients.

Methods and analysis

The LUC REED trial is a prospective, interventional, multicentre, stepped-wedge randomised controlled trial designed to assess the superiority of a LuCUS-guided strategy over standard care in ensuring treatment appropriateness for dyspnoea in elderly ED patients. The study will include 504 patients over 2 years. Patients aged >65 years presenting with acute dyspnoea and signs of severity (respiratory rate ≥22 or SpO2

Ethics and dissemination

Ethics final approval was obtained from the Institutional Review Board of France—Est IV on 4 April 2025 (2024-A01678-39). Results will be published in peer-reviewed international journals.

Trial registration number

NCT06807983.

Z-Coding for Social Contributors to Health in Colorado Federally Qualified Health Centers

imageBackground Federally Qualified Health Centers (FQHC) provide services to individuals facing systemic barriers to health equity and are disproportionately affected by adverse social determinants of health. To better align healthcare services with the needs of those individuals experiencing health inequities, it is essential to screen for and document problematic social contributors to health in electronic health records, which health systems have been mandated to document by 2026. Objectives The aims of this study were to 1) determine the prevalence of documented social contributors to health Z-codes among patients receiving care through Colorado nurse-led FQHCs across urban, rural, and frontier settings; and 2) estimate healthcare utilization and expenditures associated with the presence of documented social contributors to health Z-codes compared to a matched sample of patients without that Z-code documentation. Methods We conducted a secondary analysis of the Colorado All Payers Claim Database. Social contributor of health ICD-10 Z-codes, reflecting problematic social structural circumstances as defined by Healthy People 2030, were extracted from patients receiving care in FQHCs. Social contributor of health-related charges were computed using propensity matching to compare individuals with and without documented social contributors of health. Results Documentation of social contributors of health Z-codes was notably low. Housing instability was the most common Z-code documented. Chronic pulmonary disease, diabetes, and heart disease were the most prevalent comorbidities among those with identified social contributors of health. The majority of patients with social contributors of health Z-codes were insured through Medicaid and lived in rural areas. Persons with documented social contributors of health had significantly higher predicted annual medical expenditures compared to those without documentation. Discussion The low prevalence of social contributors of health coding aligns with previous studies and represents a missed opportunity to provide targeted interventions for populations experiencing adverse social contributors. These findings underscore the need for strategizing and implementing plans to identify and code social contributors of health, especially in facilities serving those experiencing health inequities. Improved documentation of social contributors to health can facilitate data-driven resource allocation and tailored interventions to address adverse social determinants and promote health equity.

Development of a highly specific enzyme-linked immunosorbent assay for detection of antibodies to Duck Tembusu virus using subviral particles

by Iyarath Putchong, Thaweesak Songserm, Sittinee Kulprasertsri, Shintaro Kobayashi, Preeda Lertwatcharasarakul, Wallaya Phongphaew

Duck Tembusu virus (DTMUV) belongs to the family Flaviviridae and genus Orthoflavivirus. It causes disease in ducks, affecting the nervous system and significantly reducing egg production. The first outbreak of DTMUV in Thailand was reported in 2013, with widespread cases across various regions. However, serological diagnosis of DTMUV is challenging due to antibody cross-reactivity with other flaviviruses. To address this issue, we developed an ELISA based on subviral particles. The cassette encoding the membrane precursor and envelope genes of DTMUV (strain KPS54A61) were cloned into a pCAGGS vector with an OSF-tag and transfected into HEK-293T cells to generate subviral particles. The subviral particles were detected in the supernatant of the transfected cell via immunoblotting using anti-DTMUV E protein and anti-Strep-tag antibodies, which revealed a protein band of approximately 59 kDa. An electron microscopy confirmed the presence of particles approximately 35 nm in diameter. To optimize the SP-based ELISA, checkerboard titration identified the optimal antigen concentration as 70 µg/mL and the optimal serum dilution as 1:100,000. A cut-off value was established for the assay, and testing 300 duck serum samples using the SP-based ELISA identified 41 positive samples (14%) and 259 negative samples (86%). The SP-based ELISA exhibited 100% sensitivity and specificity, achieving a perfect agreement score of 1.0 in comparison with the serum neutralization test. Additionally, specificity testing using antibodies specific to Japanese Encephalitis virus (JEV) revealed no cross-reactivity in the ELISA test. Therefore, the developed SP-based ELISA is highly effective for screening and monitoring DTMUV outbreaks in duck farms, significantly reducing the risk of viral spread and enabling the timely implementation of disease control measures.

Cohort profile: Mother and Infant Metabolome and Microbiome (MIMM) study, a prospective cohort study of mothers and infants in Boston, Massachusetts

Por: Andrews · C. · Vodapally · S. · Foster · L. P. · Lawandy · I. · Murphy · M. · Castellanos · M. · Moncada · D. · Mourao · M. L. · Bhushan · B. · Berger · P. K. · Fichorova · R. · Monthe-Dreze · C. · Freedman · S. D. · Angelidou · A. · Martin · C. R. · Sen · S.
Purpose

Breastfeeding is beneficial to the health of both the mother and infant. Despite recommendations to breastfeed by organisations including the WHO and the American Academy of Pediatrics, rates of breastfeeding remain below public health goals. The Mother and Infant Metabolome and Microbiome (MIMM) study is a prospective cohort study of healthy mother-term infant dyads designed to comprehensively assess the perinatal, maternal, neonatal and infant factors that are associated with breastfeeding outcomes and human milk composition.

Participants

MIMM participants were recruited from two medical centres in Boston, Massachusetts, from 2019 to 2023 and are followed for 2 years. Dyads were included if the mother delivered a singleton infant at ≥37 weeks’ gestation, was discharged home 2 and infant gestational age was 39.3 weeks. Approximately 43% of infants were born via caesarean delivery, and 45.5% were female.

Findings to date

MIMM study procedures include longitudinal (1) collections of maternal blood, vaginal swab, stool and milk and infant blood and stool samples and (2) assessments of breastfeeding status, child neurodevelopment and growth and maternal health at birth, 6 weeks and 6, 12, 18 and 24 months. Data collection through 18 months is complete. The overall objective of the MIMM study is to identify potential targets to improve breastfeeding outcomes, human milk composition and ultimately, maternal and child health. Preliminary analyses, reported in conference presentations (with ongoing analyses and results manuscripts pending), have found that (1) mothers with higher levels of stress were less likely to be exclusively breastfeeding their infants at 6 weeks; (2) higher breastfeeding intensity was associated with greater postpartum weight loss at 6 weeks; (3) feeding type was a more relevant predictor of feeding frequency and volume compared with feeding mode; (4) infants who received exclusive human milk had higher food enjoyment compared with those who received any formula; and (5) infants of mothers with obesity had higher average feeding volume per feed.

Future plans

Data collection for the final 24-month visit is expected to be completed by August 2025. We expect that all sample assays will be completed by December 2025. Findings will continue to be submitted for presentation at scientific conferences, and we expect to publish the first findings from this cohort in manuscript format in 2025.

Study protocol for Active Start Active Future: a randomised control trial of an early behaviour-change intervention targeting physical activity participation and sedentary behaviour in young children with cerebral palsy living in South East Queensland, Au

Por: Kilgour · G. · Reedman · S. E. · Gomersall · S. R. · Sakzewski · L. · Trost · S. · Boyd · R. N.
Introduction

The benefits of physical activity (PA) are compelling for all ages and abilities. For children with cerebral palsy (CP), two distinct health behaviours, being physically active and reducing sedentary time, are critical to target as an early intervention to reduce long-term morbidity. One approach may be to increase PA participation by empowering parents who are key to making family lifestyle changes. This study will compare Active Start Active Future, a participation-focused intervention, to usual care in a mixed-methods randomised waitlist-controlled trial.

Methods and analysis

A total of 40 children with CP (3–7 years), classified in Gross Motor Function Classification System (GMFCS) levels II–V, will be stratified (GMFCS II vs III, IV vs V) and randomised to receive either (1) Active Start Active Future, an 8-week intervention for 1 hour per week in any setting or (2) usual care followed by delayed intervention. Active Start Active Future aims to increase PA and reduce sedentary behaviour of young children with CP by providing participatory opportunities to promote PA behaviour change. Outcomes will be measured at baseline (T1), immediately postintervention at 8 weeks (T2) and at 26 weeks postbaseline (T3). The primary outcomes are the Canadian Occupational Performance Measure for both child and parent participation goals and child physical performance goal. Secondary outcomes include daily time spent in moderate to vigorous PA and sedentary time, gross motor function, quality of life, barriers to participation for the children and parents’ PA and sedentary time. Intervention acceptability and experiences of PA participation will be explored using a qualitative descriptive approach.

Ethics and dissemination

The Children’s Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/23/QCHQ/100850) and The University of Queensland Human Research Ethics Committee (2024/HE000054) have approved this study. The results of the study will be disseminated to families and community agencies as guided by our advisory group and as conference abstracts and presentations, peer-reviewed articles in scientific journals and institution newsletters and media releases.

Trial registration number

ACTRN12624000042549, Universal Trial Number: U1111-1300-7421; Australian New Zealand Clinical Trials Registry.

Usability and acceptability of ambulatory monitoring in undiagnosed syncope: insights from the ASPIRED-Q qualitative study

Por: Pearsons · A. · Hanson · C. L. · Neubeck · L. · Blackstock · C. · Clarke · E. · Reed · M. J.
Objectives

The aim of this study, which was embedded into the ASPIRED randomised controlled trial (ISRCTN10278811), was to explore patient and healthcare professional usability and acceptability of an enhanced (14-day) ambulatory ECG monitoring patch to manage and facilitate discharge of emergency department patients with unexplained syncope.

Design

A qualitative study using semistructured interviews. Data were analysed using thematic analysis and mapped using the theoretical framework of acceptability.

Participants

A sample of 20 syncope patients recruited to the ASPIRED RCT and 10 healthcare professionals who had a direct care provider and clinical decision role for syncope patients (eg, consultants, junior doctors, advanced nurse practitioners, advanced care practitioners, emergency nurse practitioners and physician associates) were recruited from four hospitals (two in England and two in Scotland) between February 2023 and January 2024.

Results

Three overarching themes developed that mapped to six of the seven constructs within the theoretical framework of acceptability. The themes were: (1) Efficacy: Patients and healthcare professionals felt that the remote intervention would increase patient reassurance. Healthcare professionals perceived the intervention would improve clinical care pathways by overcoming delays for Holter monitors, but that a standard protocol would be required to ensure appropriate intervention use. (2) Burden: Patients considered that the device was non-obstructive and easy to use. However, healthcare professionals noted that although attaching the device was simple, there would be associated time and resource costs (eg, documentation). (3) Communication and education: Comprehensive verbal and written information were considered necessary to ensure that the intervention was usable by, and acceptable to, patients. Healthcare professionals suggested additional training would be required. Additionally, they considered that feedback from patient monitoring would reinforce their decision-making and improve healthcare professionals’ self-efficacy to use the device appropriately.

Conclusions

An immediate, enhanced (14-day) ambulatory ECG monitoring patch was positively received by patients and offered healthcare professionals an acceptable route for monitoring emergency department patients with unexplained syncope. However, future use should be controlled using standardised pathways to prevent inappropriate use.

Trial registration number

ISRCTN10278811.

Personalised selection of medication for newly diagnosed adult epilepsy: study protocol of a first-in-class, double-blind, randomised controlled trial

Por: Thom · D. · Chang · R. S.-k. · Lannin · N. A. · Ademi · Z. · Ge · Z. · Reutens · D. · OBrien · T. · DSouza · W. · Perucca · P. · Reeder · S. · Nikpour · A. · Wong · C. · Kiley · M. · Saw · J.-L. · Nicolo · J.-P. · Seneviratne · U. · Carney · P. · Jones · D. · Somerville · E. · Stapleton · C.
Introduction

Selection of antiseizure medications (ASMs) for newly diagnosed epilepsy remains largely a trial-and-error process. We have developed a machine learning (ML) model using retrospective data collected from five international cohorts that predicts response to different ASMs as the initial treatment for individual adults with new-onset epilepsy. This study aims to prospectively evaluate this model in Australia using a randomised controlled trial design.

Methods and analysis

At least 234 adult patients with newly diagnosed epilepsy will be recruited from 14 centres in Australia. Patients will be randomised 1:1 to the ML group or usual care group. The ML group will receive the ASM recommended by the model unless it is considered contraindicated by the neurologist. The usual care group will receive the ASM selected by the neurologist alone. Both the patient and neurologists conducting the follow-up will be blinded to the group assignment. Both groups will be followed up for 52 weeks to assess treatment outcomes. Additional information on adverse events, quality of life, mood and use of healthcare services and productivity will be collected using validated questionnaires. Acceptability of the model will also be assessed.

The primary outcome will be the proportion of participants who achieve seizure-freedom (defined as no seizures during the 12-month follow-up period) while taking the initially prescribed ASM. Secondary outcomes include time to treatment failure, time to first seizure after randomisation, changes in mood assessment score and quality of life score, direct healthcare costs, and loss of productivity during the treatment period.

This trial will provide class I evidence for the effectiveness of a ML model as a decision support tool for neurologists to select the first ASM for adults with newly diagnosed epilepsy.

Ethics and dissemination

This study is approved by the Alfred Health Human Research Ethics Committee (Project 130/23). Findings will be presented in academic conferences and submitted to peer-reviewed journals for publication.

Trial registration number

ACTRN12623000209695.

From an Informatics Lens: Dashboards for Hospital Nurse Managers Influencing Unit Patient Outcomes

imageDashboards display hospital quality and patient safety measures aimed to improve patient outcomes. Although literature establishes dashboards aid quality and performance improvement initiatives, research is limited from the frontline nurse manager's perspective. This study characterizes factors influencing hospital nurse managers' use of dashboards for unit-level quality and performance improvement with suggestions for dashboard design. Using a descriptive qualitative design, semistructured interviews were conducted with 11 hospital nurse managers from a health system in the Midwestern United States. Thematic analysis was used to describe four perceived factors influencing dashboard use: external, data, technology features, and personal. External factors included regulatory standards, professional standards of care, organizational expectations, and organizational resources. Data factors included dashboard data quality and usefulness. Technology features included preference for simple, interactive, and customizable visual displays. Personal factors included inherent nurse manager qualities and knowledge. Guidelines for dashboard design involve display of required relevant quality measures that are accurate, timely, useful, and usable. Future research should involve hospital nurse managers in user-centered design to ensure dashboards are favorable for use. Further, opportunities exist for nurse manager informatics training and education on dashboard use in preparation for their role and responsibilities in unit-level quality and performance improvement.
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