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Frameworks for describing health inequalities in observational public health research: a scoping review protocol

Por: Buczkowska · M. · Herlitz · L. · Lewis · K. · Nguyen · V. · Ni Chobhthaigh · S. · Muldermans · C. · Lam · J.
Introduction

Observational studies play a pivotal role in understanding population health trends and informing public health policy. However, many such studies inadequately address dimensions of health inequality, potentially perpetuating existing disparities. There is currently no comprehensive overview of frameworks specifically designed to integrate health-inequality constructs into observational public health research. This protocol outlines the methodology of the scoping review, which aims to identify, describe and critically evaluate existing frameworks that explicitly incorporate health inequalities within observational studies.

Methods and analysis

We will conduct this scoping review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. Six electronic databases (PubMed, Embase, Scopus, Web of Science, Global Health and CINAHL) and eligible grey literature sources will be searched using a combination of keywords and subject headings related to health inequalities, observational study design and frameworks. Two independent reviewers will perform title/abstract screening and full-text eligibility assessment using Rayyan, while discrepancies will be resolved by consultation with a third reviewer. Findings will be synthesised narratively.

Ethics and dissemination

As this study involves analysis of publicly available literature, formal ethical approval is not required. Results will be disseminated through publication in a peer-reviewed journal, presentations at relevant conferences and communication with key stakeholders in public health and equity research. The results will also be shared directly with charities and local organisations which focus on addressing health inequalities. By providing a comprehensive map of existing frameworks, this review will inform researchers on best practices for embedding health-inequality considerations in observational studies and support the development of more equitable research methodologies.

Development and evaluation of the first fertility preservation patient decision aid to support boys and young men with cancer: The Cancer, Fertility and Me for Boys and Young Men research protocol.

Por: Jones · G. L. · Musson · D. S. · ODonnell · N. · Lewis · A. · Williamson · M. · Yeomanson · D. · Pacey · A. · Lane · S. · Folan · A.-M. · Gough · B. · Phillips · B. · Porteous · C. · Anderson · R. · Mitchell · R. T.
Introduction

Many cancer treatments can result in reduced fertility, impacting survivors’ opportunities for biological parenthood. Fertility preservation (FP) methods for boys and young men, such as cryopreservation of testicular tissue or sperm, offer hope but are currently underused among young male patients with cancer. Despite guidelines recommending early discussion of fertility implications, many newly diagnosed males do not receive FP counselling or referral to fertility services. Male cancer survivors face a higher likelihood of infertility than their peers, yet focused FP decision-making support is lacking. This study aims to address this gap by developing and evaluating the first dedicated patient decision aid (PtDA) for boys and young male patients with cancer aged 11–25 years old, to help them make informed FP decisions before receiving cancer treatment.

Methods and analysis

The current study follows a multistage process: developing the PtDA, alpha testing for acceptability with former patients, parents and healthcare professionals, and beta testing in clinical settings to ensure effective integration into routine care. Using a combination of interviews and questionnaire data, this research will assess the PtDA’s acceptability and impact on decision-making.

Ethics and dissemination

This study has been prospectively registered on the Research Registry (10273). Ethics approval has been obtained from Leeds Beckett University and the National Health Service/Health Research Authority before undertaking data collection. The final resource will be disseminated widely and made freely available online via our dedicated Cancer, Fertility and Me website, for use in clinical and research practice.

Intraoperative parathyroid hormone monitoring to guide surgery in renal hyperparathyroidism (PEREGRINE): a protocol for a randomised multiarm surgical pilot trial

Por: Staibano · P. · Au · M. · Pasternak · J. D. · Parpia · S. · Zhang · H. · Busse · J. W. · Nguyen · N.-T. · Monteiro · E. · Gupta · M. K. · Choi · D. L. · Lewis · T. · McKechnie · T. · Thabane · A. · Ham · J. · Young · J. E. · Bhandari · M.
Background

Secondary and tertiary renal hyperparathyroidism (RHPT) are common sequelae of chronic kidney disease and are associated with worse patient mortality and quality of life. Clinical guidelines remain lacking with regard to recommendations for using intraoperative parathyroid hormone (IOPTH) during surgery for RHPT. A prospective randomised study will help evaluate the role of IOPTH in guiding surgery for secondary and tertiary RHPT.

Methods/design

Intraoperative parathyroid hormone monitoring to guide surgery in renal hyperparathyroidism is a pragmatic, multicentre, five-arm, parallel-group, patient-blinded and outcome assessor-blinded prospective pilot trial used to evaluate the feasibility of performing a definitive trial. Eligible participants include adult patients diagnosed with secondary or tertiary hyperparathyroidism who are candidates for subtotal or total parathyroidectomy. Consenting patients will be randomly assigned, through central allocation, in a 1:1:1:1:1 fashion to undergo surgery with IOPTH monitoring (four experimental arms: postexcision IOPTH samples taken at 10, 15, 20 or 25 min) or to undergo surgery without IOPTH monitoring (control arm). The primary feasibility objective is to estimate the percentage of eligible patients that are randomised: ≥70% proceed; 50–69% modify protocol before proceeding;

Ethics and dissemination

Ethics approval was obtained from the Hamilton Integrated Research Ethics Board. Pilot trial results will be shared widely through local, national and international academic and clinical networks and will be disseminated through conference presentations and publication in peer-reviewed journals.

Trial registration number

NCT06542315, registered on 6 August 2024.

Case-finding for depression in primary care (CAIRO): a multicentre, cross-sectional study in England

Por: Lawton · S. A. · Mallen · C. · Chew-Graham · C. · Kingstone · T. · Muller · S. · Lewis · S. · Bajpai · R. · Helliwell · T.
Objectives

To examine the number of patients screening positive for depression, while self-completing an automated check-in screen prior to a general practice consultation.

Design

A descriptive cross-sectional study.

Setting

10 general practices in the West Midlands, England. Recruitment commenced in March 2023 and concluded in June 2023.

Participants

All patients aged 18 years and over, self-completing an automated check-in screen for any general practice prebooked appointment, were invited to participate during a 3-week recruitment period.

Primary and secondary outcome measures

The number of patients screening positive for depression using the Whooley case finding research questions was the primary outcome measure. Secondary outcome measures included: demographic and (general practice level) deprivation differences in completion responses.

Results

73.5% (n=3666) of patients self-completing an automated check-in screen participated in the CAse-fInding foR depressiOn in primary care (CAIRO) study, (61.1% (n=2239) female, mean age 55.0 years (18–96 years, SD=18.5)).

28.3% (n=1039) of participants provided a positive response to at least one of the two Whooley research questions (31.2% female and 23.8% male). Significantly more positive responses were obtained from females, those aged between 35 years and 49 years and those from more deprived practices.

Conclusions

Over a quarter of CAIRO participants provided a positive response to at least one of the two Whooley questions, suggesting possible unmet need in the population studied. A follow-up study could investigate whether responses provided at the point of check-in are raised and addressed in the subsequent consultation.

Cuff leak test and airway obstruction in mechanically ventilated ICU patients (COSMIC): a pilot feasibility randomized controlled trial protocol

Por: Estrada · J. · Armanious · I. · Perri · D. · Cook · D. J. · Duan · E. H. · Bosma · K. · Hassall · K. · Marchildon · C. · Mehta · S. · Jaeschke · R. · Piraino · T. · Carayannopoulos · K. L. · Alhazzani · W. · Lewis · K.
Introduction

The cuff leak test (CLT) is hypothesised to help optimise extubation by assessing for laryngeal oedema which, if unrecognised and untreated, could lead to post-extubation stridor, post-extubation airway obstruction, and reintubation. However, the diagnostic accuracy of the CLT to detect post-extubation stridor (and hence potentially airway obstruction) remains uncertain. Given the equipoise that exists surrounding the CLT, we are conducting a pilot randomised clinical trial (RCT) examining the CLT as part of the pathway to extubation. Herein, we report the protocol for the Cuff Leak Test and Airway Obstruction in Mechanically Ventilated ICU Patients (COSMIC): a Pilot Feasibility Randomized Clinical trial (RCT).

Methods and analysis

This is a multicentre, international, parallel-group, pragmatic, pilot RCT. We will enrol 100 mechanically ventilated patients in the intensive care unit (ICU) who are deemed ready for extubation and have at least one risk factor for laryngeal oedema. In the intervention arm, respiratory therapists will perform a qualitative CLT before extubation. If a patient passes the CLT (suggesting no laryngeal oedema), extubation will be performed in keeping with standard care. If the patient fails the CLT (suggesting laryngeal oedema), extubation will be delayed allowing for administration of dexamethasone, consideration of diuresis, and the CLT will be repeated in 12–24 hours. In the control arm, patients will be extubated without completing a CLT, without steroid administration, and without delay. Randomization will be by a 1:1 allocation, stratified by centre. The primary feasibility outcomes will include recruitment and protocol adherence. Secondary outcomes will include post-extubation stridor, reintubation within 72 hours, emergency surgical airway within 72 hours, and ICU and hospital mortality within 30 days.

Ethics and dissemination

This trial has been approved by Clinical Trials Ontario, Hamilton Integrated Research Ethics Board, State of Kuwait Ministry of Health, University of Texas Health Committee for the Protection of Human Subjects and Brant Community Health Systems Research Ethics Committee. The trial has received a No Objection Letter from Health Canada. Trial results will be disseminated via publication in peer-reviewed journals.

Trial registration number

NCT05456542.

Carer administration of as-needed subcutaneous medication for breakthrough symptoms in people dying at home: the CARiAD feasibility RCT

Por: Poolman · M. · Wright · S. · Hendry · A. · Goulden · N. · Holmes · E. · Byrne · A. · Perkins · P. · Hoare · Z. · Nelson · A. · Hiscock · J. · Hughes · D. A. · OConnor · J. · Foster · B. · Reymond · L. · Lewis · P. · Wee · B. · Roberts · R. · Parkinson · A. · Roberts · S. · Wilkinson · C.
Objectives

To determine if carer administration of as-needed subcutaneous medication for common breakthrough symptoms in people dying at home is feasible and acceptable in the UK, and if it would be feasible to test this intervention in a future definitive randomised controlled trial.

Design

We conducted a two-arm, parallel-group, individually randomised, open pilot trial of the intervention versus usual care, with a 1:1 allocation ratio, using convergent mixed methods.

Setting

Home-based care without 24/7 paid care provision, in three UK sites.

Participants

Participants were dyads of adult patients and carers: patients in the last weeks of their life who wished to die at home and lay carers who were willing to be trained to give subcutaneous medication. Strict risk assessment criteria needed to be met before the approach, including a known history of substance abuse or carer ability to be trained to competency.

Intervention

Intervention-group carers received training by local nurses using a manualised training package.

Primary outcome measures

Quantitative data were collected at baseline and 6–8 weeks post-bereavement and via carer diaries. Interviews with carers and healthcare professionals explored attitudes to, experiences of and preferences for giving subcutaneous medication and experience of trial processes. The main outcomes of interest were feasibility, acceptability, recruitment rates, attrition and selection of the most appropriate outcome measures.

Secondary outcome measures

The secondary outcome measure was time to symptom relief, calculated using data items from the carer diary, after the patient had died.

Results

In total, 40 out of 101 eligible dyads were recruited (39.6%), which met the feasibility criterion of recruiting >30% of eligible dyads. The expected recruitment target (50 dyads) was not reached, as fewer than expected participants were identified. Although the overall retention rate was 55% (22/40), this was substantially unbalanced (30% (6/20) usual care and 80% (16/20) intervention). The feasibility criterion of >40% retention was, therefore, considered not met. A total of 12 carers (intervention, n=10; usual care, n=2) and 20 healthcare professionals were interviewed. The intervention was considered acceptable, feasible and safe in the small study population. The intervention group had a considerably shorter time to medication administration than the usual-care group (median time to administer medication in intervention=5 min, usual-care=105 min). Intervention group carers felt confident in administering medication. Healthcare professional support was sought by intervention group carers in 24 out of 147 (16.3%) medication administration entries. The context of the feasibility study was not ideal, as district nurses were overstretched, unfamiliar with research methods and possibly not in equipoise. A disparity in readiness to consider the intervention was demonstrated between carers, who were uniformly enthusiastic, and healthcare professionals who were not. Findings confirmed methodological and ethics issues pertaining to researching the last days of life care.

Conclusion

The success of a future definitive trial is uncertain because of equivocal results in the progression criteria, particularly poor recruitment overall and a low retention rate in the usual-care group. Future work regarding the intervention should include understanding the context of UK areas where this has been adopted, ascertaining wider public views and exploring healthcare professional views on burden and risk in the NHS context. There should be consideration of the need for national policy and the most appropriate quantitative outcome measures to use. This will help to ascertain if there are unanswered questions to be studied in a trial.

Trial registration number

ISRCTN11211024.

Arm Based on LEg blood pressures (ABLE-BP): can systolic ankle blood pressure measurements predict systolic arm blood pressure? An individual participant data meta-analysis from the INTERPRESS-IPD Collaboration

Por: McDonagh · S. T. J. · Warren · F. C. · Sheppard · J. P. · Boddy · K. · Farmer · L. · Shore · H. · Williams · P. · Lewis · P. S. · Fordham · A. J. · Martin · U. · Aboyans · V. · Clark · C. E. · on behalf of the INTERPRESS-IPD Collaborators · White · Price · Ferrucci · Erbel · Westeri
Objectives

To determine associations between arm and ankle systolic blood pressures (SBPs), develop and validate a multivariable model predicting arm SBP from ankle SBP, and investigate associations between ankle SBP, cardiovascular disease and mortality.

Design

Ankle-arm SBP differences were examined in two-stage individual participant data (IPD) meta-analyses using multivariable hierarchical linear regression models. Models were used to derive and validate a prediction model for arm SBP based on ankle SBP. Model performance was assessed using area under the receiver operating characteristic (AUROC) curve analyses. Prognostic associations of ankle SBP with outcomes were examined using Cox proportional hazards models.

Data sources

Searches identified cohorts for the Inter-arm Blood Pressure Difference IPD (INTERPRESS-IPD) Collaboration from Medline, Old Medline, Medline in process, Embase and CINAHL databases from inception until January 2017; unpublished data were also sought. Required primary outcomes were all-cause mortality, cardiovascular mortality, and/or fatal and non-fatal cardiovascular events.

Eligibility criteria

Prospective studies from community, primary care or general clinic settings, without language restriction, that recorded SBP in both arms were eligible. Adults aged ≥18 years with SBP measured in all four limbs, in a supine position, were included in the current analyses. People with peripheral artery disease were excluded.

Data extraction and synthesis

Anonymised datasets were individually cleaned and then combined into a single dataset for the INTERPRESS-IPD Collaboration.

Results

The current dataset included 33 710 participants from 14 studies; mean age 58 years, 45% female, mean baseline arm blood pressure 138/80 (SD: 20/12) mm Hg. Mean ankle SBP was 12.0 mm Hg (95% CI 8.8 to 15.2) higher than arm SBP. The multivariable model predicting arm SBP from ankle SBP demonstrated excellent performance (AUROC curves, sensitivities and specificities were >0.82, 0.80 and 0.82, respectively, at all BP thresholds from 130 to 160 mm Hg). Model performance was superior to existing arithmetic formulae.

Ankle SBP was neither associated with all-cause nor cardiovascular mortality (HR 1.000 (0.997 to 1.002; p=0.682) and 1.001 (0.996 to 1.005; p=0.840), respectively). However, lower-reading ankle SBP was associated with fatal or non-fatal cardiovascular events (HR 1.005 (1.002 to 1.007; p

Conclusions

On average, ankle SBP is 12 mm Hg higher than arm SBP. Estimating individual arm SBP from ankle SBP measurements with a multivariable model is more accurate than existing fixed arithmetic formulae. This model, operationalised in an online calculator (https://ablebp.research.exeter.ac.uk/), could facilitate hypertension management and cardiovascular care for people unable to have arm SBP measured.

PROSPERO registration number

CRD42015031227.

Use of 3D printed head and neck models for simulating 10 common ENT emergency procedures: a prospective validation study

Por: Rehman · U. · Colton · D. · Gupta · S. · Kulloo · P. · Vijendren · A. · Howard · J. · Sangwan · P. · Davies-Husband · C. · Rudd · J. · Whittaker · M. · Stephenson · K. · Taylor · C. · Roche · P. · Eynon-Lewis · N. · Bajaj · Y. · Lau · A. · Okhovat · S. · Rollin · M. · Lechner · M.
Objective

This study aims to validate a high-fidelity three-dimensional (3D)-printed head and neck model for training emergency medicine (EM) physicians, primary care physicians and allied health professionals in managing 10 common ear, nose and throat (ENT) emergencies.

Setting

The study was conducted at an ENT Emergencies course in London.

Study design

Prospective validation study.

Participants

All delegates (n=90) were healthcare professionals. Among them, 60% (n=54) were EM residents/trainees, 28% (n=25) were primary care residents/trainees, 4% (n=4) were ENT residents/trainees, 4% (n=4) were emergency nurse practitioners, 2% (n=2) were primary care attending physicians and 1% (n=1) was an EM attending/consultant. All faculty were consultant ENT surgeons (n=11).

Intervention

The 3D models, produced using proprietary 3D printing technology (Fuesetec), were used in a 1-day ENT emergencies course for validating training and confidence of delegates in performing 10 common ENT emergencies.

Results

A total of 86% (n=77) of delegates found the models extremely or very helpful in learning ENT emergencies. Delegates rated the resemblance to real patients as excellent or very good in both haptic feedback (n=58, 64%) and tissue texture (n=67, 74%). Additionally, 74%–96% of delegates felt confident in performing the 10 ENT procedures after using the models.

Conclusions

The 3D models enhanced participant confidence in performing 10 common ENT emergency procedures, demonstrating good face, content and indirect criterion validity. These models could support emergency ENT skill development in local emergency departments.

Rapid cycle, randomised testing of precision feedback to improve engagement with a process measure dashboard amongst urologists: study protocol for a hybrid trial

Por: Lewicki · P. · Salka · B. · Daignault-Newton · S. · Ross · J. · Krumm · A. · Ghani · K. R. · Dauw · C. · Landis-Lewis · Z. · Stensland · K. D. · Michigan Urological Surgery Improvement Collaborative
Introduction

Rapid-cycle randomised testing holds high potential to enhance quality improvement practice but remains under-utilised because it requires significant resource commitment. However, infrastructure for learning networks, such as collaborative quality initiatives and large-scale quality improvement consortia, holds potential to support rapid-cycle testing at low cost and with minimal effort. For example, rapid-cycle randomised testing could be used to optimise ‘precision feedback’, which prioritises highly motivating tailored content to improve engagement with audit and feedback. We combined these concepts (rapid cycle, randomised testing and precision feedback) with a low-resource emphasis in conceiving this trial.

Methods and analysis

A stepped wedge randomised controlled trial will deliver an intervention consisting of precision feedback and modifications to audit and feedback communication to 100 urologists performing ureteroscopy within the Michigan Urological Surgery Improvement Collaborative (MUSIC) and will be compared with a control consisting of standard ‘one-size-fits-all’ audit and feedback. The study’s primary endpoint is online dashboard engagement, measured as the clickthrough rate through the tracking of embedded links in emails. The stent rate following pre-stented ureteroscopy will also be measured. The primary hypothesis is that precision feedback will increase engagement with an audit and feedback dashboard and decrease rates of stenting following pre-stented ureteroscopy. Endpoints will be analysed by linear modelling accounting for repeated measures within individuals, exploring the primary hypothesis through a main effect by the study arm.

Ethics and dissemination

Ethics and regulatory approval have been obtained from the Institutional Review Board of the University of Michigan (HUM#00248876). The findings will be disseminated in peer-reviewed journals and conferences.

Trial registration number

ClinicalTrials.gov registration number: NCT06465667. Registered 6/20/2024. https://clinicaltrials.gov/study/NCT06465667>

Clinical and cost-effectiveness of a personalised guided consultation versus usual physiotherapy care in people presenting with shoulder pain: a protocol for the PANDA-S cluster randomised controlled trial and process evaluation

Por: Harrisson · S. · Myers · H. · Wynne-Jones · G. · Bajpai · R. · Bratt · C. · Burton · C. · Harrison · R. · Jowett · S. · Lawton · S. A. · Saunders · B. · Beard · D. · Bucknall · M. · Chester · R. · Heneghan · C. · Huckfield · L. · Lewis · M. · Mallen · C. · Pincus · T. · Rees · J. L. · Roddy
Introduction

Musculoskeletal shoulder pain is a common reason for people to be treated in physiotherapy services, but diagnosis can be difficult and often does not guide treatment or predict outcome. People with shoulder pain cite a need for clear information, and timely, tailored consultations for their pain. This trial will evaluate the introduction of a personalised guided consultation to help physiotherapists manage care for individuals with shoulder pain.

Methods and analysis

This is a cluster randomised controlled trial to evaluate the clinical and cost-effectiveness of introducing a personalised guided consultation compared with usual UK NHS physiotherapy care. Physiotherapy services (n=16) will be randomised in a 1:1 ratio to either intervention (physiotherapy training package and personalised guided consultation incorporating a new prognostic tool) or control (usual care); 832 participants (416 in each arm) identified from participating physiotherapy service waiting lists aged 18 years or over with shoulder pain will be enrolled. Follow-up will occur at 3 time points: 6 weeks, 6 months and 12 months. The primary outcome will be the Shoulder Pain and Disability Index (SPADI) score over 12 months. Secondary outcomes include global perceived change of the shoulder condition, sleep, work absence and the impact of shoulder pain on work performance, healthcare utilisation and health-related quality of life (using EuroQol 5 Dimension 5 Level (EQ-5D-5L)). A multimethod process evaluation will investigate views and experiences of participants and physiotherapists, assess uptake, facilitators and barriers to delivery, and changes in factors assumed to explain intervention outcomes. Primary analysis of effectiveness will be by intention-to-treat, and a health economic evaluation will assess cost-utility of introducing the personalised consultation.

Ethics and dissemination

The trial received ethics approval from the Yorkshire & The Humber (South Yorkshire) Research Ethics Committee (REC reference: 23/YH/0070). Findings will be shared through journal publications, media outlets and conference presentations. Supported by patient contributors and clinical advisors, we will communicate findings through a designated website, networks, newsletters, leaflets and in the participating physiotherapy services.

Trial registration number

ISRCTN45377604.

Influence of context on engagement with COVID-19 testing: a scoping review of barriers and facilitators to testing for healthcare workers, care homes and schools in the UK

Por: Andersen-Waine · B. · Keene · C. M. · Dickinson · S. · Naidoo · R. · Ferguson-Lewis · A. · Polner · A. · Amswych · M. · White · L. · Molyneux · S. · Wanat · M. · EY-Oxford Health Analytics Consortium · Moldokmatova · Polner · Ferguson-Lewis · Lambert · Andersen-Waine · Gao · Franc
Objective

The UK government’s response to the COVID-19 pandemic included a ‘test, trace and isolate’ strategy. Testing services for healthcare workers, care homes and schools accounted for the greatest spend and volume of tests. We reviewed relevant literature to identify common and unique barriers and facilitators to engaging with each of these testing services.

Design

Scoping review.

Search strategy

PubMed, Scopus and the WHO COVID-19 Research Database were searched for evidence published between 1 January 2020 and 7 November 2022. This was supplemented by evidence identified via free-text searches on Google Scholar and provided by the UK Health Security Agency (UKHSA).

Data extraction and synthesis

Data were extracted by a team of reviewers and synthesised thematically under the broad headings of perceptions, experiences, barriers and facilitators to engaging with the COVID-19 testing programme.

Results

This study included 40 sources, including 17 from projects that informed UKHSA’s decisions during the pandemic. Eight themes emerged and were used to categorise barriers and facilitators to engaging with the testing services for healthcare workers, care homes and schools: (1) perceived value, (2) trust in the tests and public bodies, (3) importance of infrastructure, (4) impact of media and social networks, (5) physical burden of the test, (6) perceived capability to undertake testing, (7) importance of relevant information and 8) consequences of testing.

Conclusions

Universal barriers and facilitators to engagement with the testing programme related to the core elements of each testing service, such as uncomfortable specimen collection and the influence of media and peers; these could be mitigated or leveraged to increase engagement across settings. However, the individuals involved, perceptions of value and available resources differed across services, leading to unique experiences between settings. Thus, consideration of context is crucial when designing and implementing a testing programme in response to a pandemic.

Association between herpes simplex virus 1 and dementia: a systematic review protocol

Por: Hong · A. T. · Luu · I. Y.-K. · Lin · F. · Vij · A. P. · Lewis · K. A. · Wilson · M. L. · Klausner · J. D.
Introduction

Herpes simplex virus 1 (HSV-1) infects approximately two-thirds of the global population under the age of 50 years. Although widely prevalent, the possible implications of HSV-1 in neurodegenerative diseases, especially dementia and Alzheimer’s disease, remain poorly understood. This review seeks to elucidate this association and explore the potential benefits of preventing or treating herpesvirus infections on dementia risk. The goal is to enhance our understanding of HSV-1’s potential role in dementia, which could inform the development of future therapeutic interventions for these conditions.

Methods and analysis

PubMed, Embase (Elsevier/Ovid), Web of Science, Scopus, Global Health, PsycInfo, Cochrane Library and Clinicaltrials.gov will be searched from the inception of each respective database. Studies that have HSV-1 as an exposure and dementia, or its subtypes, as a primary outcome will be included. Two researchers will independently screen titles, abstracts and full texts, with discrepancies resolved by a third researcher. Systematic data extraction from eligible studies will be performed using a standardised template. Risk of bias of individual studies will be assessed with the Cochrane Collaboration approach. We will assess the overall quality of cumulative evidence using the Grading of Recommendations, Assessment, Development and Evaluations criteria. Statistical analysis will employ a random effects model, and heterogeneity will be determined with Cochrane’s Q test and assessed using I2. Studies will be grouped by population subgroups and dementia subtypes when possible to explore nuances in results. We will consider performing meta-regression if heterogeneity remains after subgroup analyses. All statistical analyses will be conducted using Stata V.18 software (College Station, Texas, USA).

Ethics and dissemination

No ethical approval is required since data will be collected from existing studies. The review will be disseminated through peer-reviewed publication and at national and international conferences.

PROSPERO registration number

CRD42024516789.

Registered Nurse‐Led Interdisciplinary Care: A Single Case Study of a Young Woman With Intellectual Disability and Chronic and Complex Health Problems

ABSTRACT

Aim

To describe how specialised models of registered nurse-led care and support can play a vital role in the health and quality of life of someone with intellectual disability and multiple chronic and complex health problems.

Design

Single instrumental case study.

Methods

Data collection occurred between March and August 2023, and included interviews with parents, historical case files, descriptions of the nurse-led model of care and a list of the daily registered nurse-led interventions.

Results

The evidence presented strongly support the positive impact a nurse-led model of care can have for persons with profound disability and complex health conditions, and their families. The improved quality of life observed in this project underscores the significant role nurses play in enhancing the well-being of this vulnerable population.

Conclusion

Further research on a larger scale should be completed to create a robust foundation of a specialised, nurse-led model of care for individuals with profound disability and complex health conditions.

Implications

There is room for funded intermediate models of care as the health system cannot be expected, and nor is it appropriate, to provide ongoing care for all people with intellectual disability.

Reporting Method

This study adhered to the COREQ guidelines for qualitative research.

Patient or Public Contribution

No patient or public contribution.

Reliability and Validity of Measures Commonly Utilized to Assess Nurse Well-Being

imageBackground A healthy nursing workforce is vital to ensuring that patients are provided quality care. Assessing nurses' well-being and related factors requires routine evaluations from health system leaders that leverage brief psychometrically sound measures. To date, measures used to assess nurses' well-being have primarily been psychometrically tested among other clinicians or nurses working in specific clinical practice settings rather than in large, representative, heterogeneous samples of nurses. Objectives This study aimed to psychometrically test measures frequently used to evaluate factors linked to nurse well-being in a heterogeneous sample of nurses within a large academic health system. Methods This cross-sectional, survey-based study used a convenience sample of nurses working across acute care practice settings. A total of 177 nurses completed measures, which included the Professional Quality of Life, the short form of the Professional Quality of Life measure, the two-item Connor–Davidson Resilience Scale, the five-item World Health Organization Well-Being Index, the Secondary Traumatic Stress Scale, and the single-item Mini-Z. Internal reliability and convergent validity were assessed for each measure. Results All the measures were found to be reliable. Brief measures used to assess domains of well-being demonstrated validity with longer measures, as evident by significant correlation coefficients. Discussion This study provides support for the reliability and validity of measures commonly used to assess well-being in a diverse sample of nurses working across acute care settings. Data from routine assessments of the nursing workforce hold the potential to guide the implementation and evaluation of interventions capable of promoting workplace well-being. Assessments should include psychometrically sound, low-burden measures, such as those evaluated in this study.

Youth, caregiver and healthcare professional perspectives on planning the implementation of a trauma‐informed care programme: A qualitative study

Abstract

Aims

To explore youth, caregiver and staff perspectives on their vision of trauma-informed care, and to identify and understand potential considerations for the implementation of a trauma-informed care programme in an inpatient mental health unit within a paediatric hospital.

Design and Methods

We applied the Interpretive Description approach, guided by complexity theory and the Implementation Roadmap, and used Applied Thematic Analysis methods.

Findings

Twenty-five individuals participated in individual or group interviews between March and June 2022, including 21 healthcare professionals, 3 youth and 1 caregiver. We identified two overarching themes. The first theme, ‘Understanding and addressing the underlying reasons for distress’, related to participants’ understanding and vision of TIC in the current setting comprising: (a) ‘Participants’ understanding of TIC’; (b) ‘Trauma screening and trauma processing within TIC’; (c) ‘Taking “a more individualized approach”’; (d) ‘Unit programming’; and (e) “Connecting to the community”. The second theme, ‘Factors that support or limit successful TIC implementation’ comprises: (a) ‘The need for a broad “cultural shift”’; (b) ‘The physical environment on the unit’; and (c) ‘Factors that may limit successful implementation’.

Conclusion

We identified five key domains to consider within trauma-informed care implementation: (a) the centrality of engagement with youth, caregivers and staff in trauma-informed care delivery and implementation, (b) trauma-informed care core programme components, (c) factors that may support or limit success in implementing trauma-informed care within the mental health unit and (d) hospital-wide and (e) the importance of intersectoral collaboration (partnering with external organizations and sectors).

Impact

When implementing TIC, there is an ongoing need to increase clarity regarding TIC interventions and implementation initiatives. Youth, caregiver and healthcare professional participants shared considerations important for planning the delivery and implementation of trauma-informed care in their setting. We identified five key domains to consider within trauma-informed care implementation: (a) the centrality of relational engagement, (b) trauma-informed care programme components, (c) factors that may support or limit successful implementation of trauma-informed care within the mental health unit and (d) hospital-wide and (e) the importance of intersectoral collaboration. Organizations wishing to implement trauma-informed care should consider ongoing engagement with all relevant knowledge user groups throughout the process.

Reporting Method

Standards for Reporting Qualitative Research (SRQR).

Patient or Public Contribution

The local hospital research institute's Patient and Family Advisory Committee reviewed the draft study methods and provided feedback.

Nurse experiences of partnership nursing when caring for children with long‐term conditions and their families: A qualitative systematic review

Abstract

Aim

To explore the experiences of partnership nursing among nurses when caring for children and young people with long-term conditions, and their families.

Background

Partnership nursing is promoted as a positive model of care among paediatric nurses, where shared roles and decision-making, parental participation, mutual trust and respect, communication and negotiation are valued to create positive care experiences and enhance patient outcomes. Little is known about how nurses use partnership with both the patient and the parents in this triad to deliver partnership nursing.

Design

A qualitative systematic review followed Joanna Briggs Institute meta-aggregation approach and has been reported according to PRISMA guidelines.

Methods

A comprehensive systematic search was conducted in seven electronic databases. Studies were assessed according to a pre-determined inclusion criteria. Qualitative findings with illustrative participant quotes were extracted from included studies and grouped into categories to inform overall synthesised findings. Methodological quality assessment was conducted.

Findings

A total of 5837 publications were screened, and 41 qualitative studies were included. Three overarching synthesised findings were identified: (1) Using education to promote feelings of safety and support, (2) Partnering to develop a strong therapeutic relationship and (3) Optimising communication underpinned by shared decision-making principles to deliver individualised care.

Conclusion

Nurses demonstrated successful partnership in their practice, but focused on developing dyadic nurse–parent and dyadic nurse–child partnerships. Future practice development that creates a three-way triadic partnership may aid therapeutic relationships and shared decision-making.

Implications for clinical practice

Clinicians can reflect on how dyadic partnerships (focusing on the child or the parent) may exclude opportunities for coherent care. Further exploration in practice, policy and research as to how nurses determine child competency and child and parent level of engagement in triadic partnership may improve the potential of meaningful shared decision-making.

Decision‐making in nursing research and practice—Application of the Cognitive Continuum Theory: A meta‐aggregative systematic review

Abstract

Aim

To explore how the Cognitive Continuum Theory has been used in qualitative nursing research and to what extent it has been integrated in the research process using the Qualitative Network for Theory Use and Methodology (QUANTUM).

Background

Theory, research and nursing are intrinsically linked, as are decision-making and nursing practice. With increasing pressure on nurses to improve patient outcomes, systematic knowledge regarding decision-making is critical and urgent.

Design

A meta-aggregative systematic review.

Methods

Databases

CINAHL, Medline, PsycINFO, Embase and PubMed were searched from inception until May 2022 for peer-reviewed research published in English.

Seven studies were included and assessed for methodological quality using the Joanna Briggs Institute checklist for qualitative research. A meta-aggregative synthesis was conducted using Joanna Briggs methodology. The QUANTUM typology was used to evaluate the visibility of the Cognitive Continuum Theory in the research process.

Results

The review identified five synthesised findings, namely: 1. the decision-making capacity of the individual nurse, 2. nurses’ level of experience, 3. availability of decision support tools, 4. the availability of resources and 5. access to senior staff and peers. Only two of seven studies rigorously applied the theory. The included studies were mainly descriptive-exploratory in nature.

Conclusion

The transferability of the Cognitive Continuum Theory was demonstrated; however, evolution or critique was absent. A gap in the provision of a patient-centric approach to decision-making was identified. Education, support and research is needed to assist decision-making.

A new Person-Centred Nursing Model of the Cognitive Continuum Theory has been proposed to guide future research in clinical decision-making.

Relevance to Clinical Practice

Nurses make numerous decisions every day that directly impact patient care, therefore development and testing of new theories, modification and revision of older theories to reflect advances in knowledge and technology in contemporary health care are essential.

Development and Psychometric Evaluation of the Children's Illness-Related Concerns Scale

imageBackground Despite the effect of maternal breast cancer on many children, there is no valid or reliable quantitative measure of the concern that children attribute to their mothers' disease, which constrains both science and clinical practice. Objectives This study aimed to develop and psychometrically evaluate the initial measures of child-reported, illness-related concerns associated with maternal cancer. Methods The study was conducted in three phases: scoping review, item extraction from a battery of items obtained from school-aged children about general issues related to their mothers' breast cancer, and testing of the three proposed structural models of these extracted items using confirmatory factor analysis. The scoping review yielded five categories of illness-related concerns: altered family routines, uncertainty, concerns about illness contagion, maternal death, and maternal well-being. To reflect these five categories, 18 items were extracted from a 93-item questionnaire completed by 202 school-aged children regarding their mothers' breast cancer. Next, three structural models were hypothesized to assess the construct validity of illness-related concerns: five-, three-, and one-factor models. Confirmatory factor analysis was used to test and compare the models. Results The five-factor model best fit the data, and each factor showed adequate internal consistency reliability. These findings align with the a priori five-factor model informed by the scoping review. Conclusion The results provide initial evidence of the construct validity of the 18-item Children's Illness-Related Concerns Scale, which can be used to assess children's concerns and inform future intervention studies.
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