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Are equity, diversity and inclusion considered in early-phase studies evaluating innovative and developing surgical procedures? Protocol for a scoping review

Por: Etemadi · M. · Macefield · R. · Avery · K. · Elliott · D. · Dawson · S. · Blencowe · N. S. · Coyle · M. · Richards · H. S. · Graham · B. · Jones · E. · Torkington · A. · Chatfield · K. · Malik · H. · Garlick · M. · Blazeby · J.
Introduction

Increased risks and concerns regarding patient safety in early-phase studies exist because knowledge about the new intervention is still accumulating. This means that narrow eligibility criteria are needed. However, if early-phase studies are narrow in their inclusion, for example, by not including diverse populations, there is a potential risk that new therapies have insufficient relevant efficacy and safety data. Existing research has explored equity, diversity and inclusion (EDI) factors in early-phase pharmaceutical studies, but it has not been possible to find studies that have systematically examined whether EDI factors have been considered in surgical studies reporting innovative procedures. We aim to examine how EDI factors are considered in early-phase surgical studies and surgical innovation reports to explore how this may impact on later-phase evaluation and inclusive intervention implementation.

Methods and analysis

A scoping review following the JBI (Joanna Briggs Institute) and Arksey and O’Malley’s five-step process is being conducted. We will search Scopus, PubMed and Web of Science for surgical early-phase studies. A two-step screening process for eligibility is being used. Independent double screening will take place for 20% of the papers. Eligible articles will report early evaluation of an innovative surgical/invasive procedure. Excluded will be comparative and later-phase studies and early evaluations of pharmaceutical products even in a surgical setting. Data on article details, patient eligibility and whether protected characteristics are reported and considered will be extracted. Information about EDI considerations reported in the introduction or discussion of the papers will also be extracted. Findings will be discussed with a patient advisory group. A content synthesis approach will be undertaken and descriptive summaries presented.

Ethics and dissemination

This study does not require ethical approval being a secondary analysis. The findings will be disseminated through academic journal publications and oral presentations.

Factor Structure and Longitudinal Invariance of the Cancer Behaviour Inventory: Assessing Cancer‐Coping Self‐Efficacy in Patients With Moderate‐to‐High Symptoms

ABSTRACT

Background

The Cancer Behaviour Inventory–Brief Version was designed to assess cancer-coping self-efficacy in clinical and research settings where minimising patient burden is essential. However, there is no evidence of its longitudinal validity. Although widely used in cancer research, the lack of evidence for longitudinal invariance significantly undermines its validity in studies spanning multiple time points. Establishing longitudinal invariance enables valid comparisons over time, enhancing our confidence in applying it in longitudinal research.

Aim

To examine the factor structure of the measurement and test its longitudinal invariance across four time points in cancer patients experiencing moderate-to-high symptoms during curative cancer treatment.

Design

A longitudinal psychometric evaluation.

Methods

This is a secondary data analysis of a randomised controlled trial in patients with moderate-to-high symptoms undergoing cancer treatment (N = 534). We conducted longitudinal invariance tests for the measurement using four time points. Other psychometric tests included confirmatory factor analysis, reliability analyses and correlations.

Results

Our confirmatory factor analysis supported the four-factor, 12-item structure for the Cancer Behaviour Inventory–Brief Version. Items 1 and 6 were found to be moderately correlated. The resulting 12-item measure demonstrated good internal consistency, with convergent and divergent validity supported by correlations with selected instruments. Finally, longitudinal invariance was tested, which revealed strict measurement invariance across four time points (CFI = 0.930, RMSEA = 0.045, SRMA = 0.056).

Conclusion

We found that the factor structure of the Cancer Behaviour Inventory–Brief Version remained stable over four time points in a sample of patients having moderate to high symptoms under cancer treatment. This supports its accountability for examining the changes in cancer-coping self-efficacy among cancer patients over time in longitudinal studies.

Implications

This study confirms that Cancer Behaviour Inventory–Brief Version has adequate internal consistency and demonstrated evidence of construct validity. Our conclusion of strict longitudinal invariance supports its credibility for continuous assessment of cancer-coping self-efficacy to evaluate patient outcomes and intervention processes over time in clinical and research settings.

Patient or Public Contribution

No patient or public contribution.

Emergency Nurses' Perceptions and Experiences in Managing Acute Pain in Critically Ill Adult Patients: A Qualitative Study

ABSTRACT

Aim

The aim of this study was to examine the perceptions and experiences of emergency nurses managing acute pain in critically ill patients.

Design

Qualitative descriptive study.

Method

Non-participant observations (n = 46, 157 h across 10 shifts) and semi-structured interviews (n = 30) were conducted at two Australian metropolitan emergency departments from November to December 2020. Transcribed data were analysed using reflexive thematic analysis.

Results

The qualitative analysis yielded three main themes and eight subthemes: (i) being in the resuscitation area in which participants detail learning to work in the resuscitation area; influences in managing critically ill patients and confidence in acute pain management; (ii) prioritising pain management identified the challenges in optimising pain management and balancing departmental demands; and (iii) between being and doing and how nurse–patient interactions and care behaviours impacted on optimising pain management and comfort in the resuscitation area.

Conclusion

Emergency nurses were primarily responsible for the continuity of patient care and optimisation of pain control for critically ill patients. Confidence in managing acute pain in critically ill patients was variable. While nurses actively sought ways to provide a reassuring presence and comfort to critically ill patients, this was limited by unpredictable workloads, availability of staff and communication challenges.

Implications for the Profession and/or Patient Care

These study findings may assist in the development of policy and formal education of emergency nurses transitioning into the resuscitation area and the management of acute pain in critically ill patients.

Impact

Pain is under-assessed and managed in critically ill patients, and this could stem from emergency nurses' practices. The findings could inform interventions to enhance pain management and practices.

Patient or Public Contribution

No patient or public contribution.

Reporting Method

This study adhered to the COREQ criteria.

Exploring the Development of Early Career Nurses: Insights 4 Years After Graduation

ABSTRACT

Aim

To explore how Early Career Nurses perceive their preparedness for nursing practice, the teaching and learning experiences, and the role of professional experience placements on their professional development.

Design

A qualitative study using a hermeneutic phenomenological approach.

Method

The study involved 25 Early Career Nurses who participated in follow-up interviews 4 years post-graduation in Australia between 2022 and 2024. Data were collected through semi-structured interviews and analysed using Thematic Analysis.

Results

Three key themes emerged: gaps in preparedness, the power of being embedded and too many balls to juggle. Participants indicated a mixed sense of preparedness with significant gaps in clinical skills. They emphasised the critical role of professional experience placements and mentorship to bridge the gap between theoretical knowledge and practical application. Placements and mentorship opportunities were considered essential to develop confidence and competence for effective nursing practice.

Conclusion

The study highlights the necessity for nursing curricula to address significant gaps in clinical skills, particularly in surgical and emergency nursing. By incorporating more simulation-based learning, interprofessional education and robust mentorship programmes, nursing education can better prepare graduates for the realities of clinical practice. These enhancements will help ease the transition from academic training to clinical practice, reducing reality shock and fostering a more confident, competent and resilient nursing workforce.

Implications for the Profession

Nursing education must integrate more simulation-based learning and interprofessional education opportunities, which are crucial for bridging the gap between theoretical knowledge and practical application, ensuring that graduates are adequately prepared for the demands of clinical practice. Additionally, professional experience placements and mentorship should be prioritised to develop the confidence and competence for effective nursing practice.

Reporting Method

This study adheres to the Consolidated criteria for reporting qualitative research guidelines.

Patient or Public Contribution

No Patient or Public Contribution.

Using 'research cafes as a proof-of-concept model for engaging minoritised communities in UK health research: a mixed-methods feasibility study in South West London

Por: Kurade · S. S. N. · Heffernan · C. · Curran · N. · Lelliott · Z. · Milocco · S. · Ocloo · J.
Objective

This proof-of-concept study explored the feasibility and acceptability of research cafés as a community-based model to engage racially minoritised communities in health research, with a focus on mental health.

Design

Adopting a community peer research approach, a research team led by researchers from racially minoritised backgrounds, partnered with four voluntary organisations to conduct four research cafés. A mixed-methods feasibility design combined descriptive quantitative questionnaire data with thematic analysis of discussion notes to evaluate the impact of these cafés in South West London.

Setting

The study took place in Wandsworth, Kingston, Croydon and Sutton, in community venues provided by the voluntary organisations.

Participants

A total of 75 participants from racially minoritised backgrounds attended the sessions. Participants were intentionally selected based on age, ethnicity, location, mental well-being experiences and willingness to engage in mental health research.

Main outcome measures

Quantitative data were collected on participant attendance, demographics and feedback. Qualitative data captured participant perceptions and experiences related to healthcare and research.

Results

The study took place between October 2023 and March 2024. Out of the 112 individuals who registered, 75 people attended with 74 contributing to the analysis (excluding one on the day sign-up). Participants were predominantly Asian/Asian British (62%) and Black/Black British (31%). All participants reported feeling comfortable and respected. Understanding of research improved for 96% and 95% expressed interest in further research involvement, most commonly the idea of joining a peer research network (64%). Participants also highlighted a need for training in research methods and communication skills for ongoing involvement. Five main themes emerged from the café discussions: (1) systemic barriers to accessing safe healthcare and mistrust of UK healthcare systems; (2) the need for cultural competence and sensitivity in healthcare and research; (3) research as a positive step for change; (4) barriers to research participation and (5) the importance of incentives and feedback for research participation.

Conclusions

Preliminary findings suggest that diverse and inclusive community-based partnerships are the basis for developing research cafés as a feasible and acceptable model for engaging racially minoritised communities in health research. They complement existing participatory approaches by creating inclusive, peer-facilitated spaces that build trust, improve awareness and generate high intention for future involvement and participation. Future studies are needed to test the model’s scalability across different geographic and demographic contexts and evaluate its long-term impact on research literacy, participation and equity.

Effectiveness of digital physiotherapy interventions in patients with knee osteoarthritis: a systematic review and meta-analysis of randomised controlled trials

Por: Cheung · T. H. R. · Elliott · M. T. · Stephens · G. · Mansfield · M.
Objectives

This systematic review and meta-analysis aims to provide an overview of the effectiveness of digital physiotherapy interventions on pain, physical functions and quality of life for patients with knee osteoarthritis.

Design

Systematic review and meta-analysis using the Grading of Recommendation, Assessment, Development and Evaluation (GRADE) approach.

Data sources

A systematic search of electronic databases, including MEDLINE, EMBASE, Web of Science, PsycInfo, CINAHL, Scopus and Cochrane Library, was conducted on 19 February 2025.

Eligibility criteria for selecting studies

We included randomised controlled trials which compared digital physiotherapy interventions to standard physiotherapy care for patients with knee osteoarthritis. Main outcomes included pain, physical functions and quality of life.

Data extraction and synthesis

25 studies met the inclusion criteria, and 18 studies were eligible for meta-analysis. The primary author conducted the initial search, selected articles and extracted data from eligible studies, which were independently checked by a second reviewer. Risk of bias (ROB) was assessed by Cochrane ROB-2 tool. Quality of evidence was evaluated by the GRADE approach.

Results

Overall, digital physiotherapy was associated with a small but statistically significant improvement in physical function (SMD=0.24, 95% CI 0.13 to 0.35); an overall meta-analysis was not performed for pain and quality of life due to considerable heterogeneity. Subgroup analyses revealed both video-conferencing and app- or web-based physiotherapy significantly reduced pain (SMD=–0.53, 95% CI –1.06 to –0.01 and SMD=–0.47, 95% CI –0.70 to –0.25, respectively) and physical function (SMD=0.32, 95% CI 0.10 to 0.54 and SMD=0.30, 95% CI 0.09 to 0.50 respectively). Digital physiotherapy interventions with individualised exercise components also reduced pain (SMD=–0.43, 95% CI –0.66 to –0.21) and improved physical function (SMD=0.30, 95% CI 0.17 to 0.43), when compared with non-exercise interventions.

Conclusion

There was moderate-quality evidence to support the use of digital physiotherapy interventions in improving pain and function in patients with knee osteoarthritis. Subgroup analyses revealed low-to-moderate quality evidence in using video-conferencing and app-/web-based physiotherapy and interventions with exercise components to treat patients with knee osteoarthritis. Overall, there were limited high-quality trials in drawing a robust conclusion. High ROB and huge heterogeneity were observed across studies. Further research should minimise the ROB and investigate the effect of different digital modalities, intervention components and length of follow-up.

Barriers and facilitators to accessing services for neurodevelopmental disorders among the carers of individuals from Black, Asian and minority ethnic groups in the UK: a scoping review

Por: Vincent · B. P. · Maryam · Z. · Ali · N. · Bushnell · M. · Elliott · E. · Randhawa · G.
Objective

To identify the barriers and facilitators to accessing services for neurodevelopmental disorders (NDDs) among the carers of individuals from Black, Asian and minority ethnic groups in the UK.

Design

A scoping review.

Data sources

Seven databases: PubMed, Cochrane, MEDLINE Full Text, APA PsycINFO, Scopus, CINAHL and Web of Science were searched for relevant studies up to the end of March 2025. Titles and abstracts and, where appropriate, full-text articles were screened based on predefined inclusion and exclusion criteria. Two reviewers independently screened the 6454 studies, with data extraction carried out by two reviewers. A narrative synthesis of the findings was undertaken.

Findings

A total of 15 studies were included in the review, the majority of which were qualitative (n=9; 60%). Among the Black, Asian and minority ethnic populations represented, South Asians comprised the predominant group. The review underscores that the barriers faced by Black, Asian and minority ethnic communities are multifactorial, which includes: (1) language and communication barriers, (2) cultural and religious influences, (3) stigma, (4) formal and informal support systems and (5) experience with healthcare services.

Conclusion

Access to neurodevelopmental care for carers from Black, Asian and minority ethnic groups in the UK is shaped by complex, multifactorial barriers. These communities are not homogeneous, and evidence gaps make it unclear whether challenges are shared or distinct. Greater understanding is needed to inform culturally appropriate, evidence-based policy and practice. Further research is essential to address disparities and improve equitable access across all groups.

The Impact of Thriving at Work and Occupational Supports: Early Career Nurse Intentions to Leave an Organisation and Profession

ABSTRACT

Aim

To examine the direct and indirect predictors of thriving at work and its impact on intention to leave the organisation or profession among early career nurses.

Design

A repeated cross-sectional design.

Methods

A sub-study of early career nurses as part of an Australian longitudinal follow up study, commenced in 2018, was conducted. The sub-study asked early career nurses between their second and sixth year after graduating to complete a structured online questionnaire assessing thriving at work and several predictor variables. Data were analysed using Pearson's correlation, multiple linear regression, and path analysis.

Results

Among the 67 participants (response rate of 42.9%), thriving at work was positively correlated with occupational hardiness, social support from colleagues, and wellbeing, while negatively correlated with compassion fatigue. Thriving at work and perceived organisational support were the significant predictors of intention to leave the organisation, while perceived organisational support was the only significant predictor of intention to leave the profession.

Conclusion

The importance of strong collegial relationships, compassion fatigue, and improving wellbeing to enhance thriving at work are highlighted. Fostering an environment where employees can thrive is crucial to reduce the intentions to leave an organisation. Relationships with the managers and quality of care provision also play a crucial role in reducing turnover and leave intentions. Perceived organisational support enhances employee wellbeing, thereby reducing turnover intentions. Future strategies should focus on comprehensive support systems to retain nurses in their organisation and the profession.

Implications for the Profession

Enhancing thriving at work and perceived organisational support can reduce early career nurses' intention to leave their organisation. However, job stressors and interpersonal conflicts also influence professional leave decisions.

Reporting Method

This study has adhered to the STROBE guidelines.

Patient or Public Contribution

No Patient or Public Contribution.

Move to improve: protocol for a single-arm, pragmatic feasibility trial of an individualised physical activity programme for children with chronic conditions

Por: Sivaramakrishnan · H. · Finlay-Jones · A. · Valentine · J. · Wood · F. M. · Naylor · L. H. · Haustead · L. · Davey · E. · Reid · S. · Shetty · V. B. · Graciet · J. · OMeara · D. · Robertson · A. · Davis · E. · Move to Improve Author Group · Elliott · Walwyn · Gottardo · Martin · Long
Introduction

Physical activity improves physical and psychosocial outcomes in healthy children and in children with a range of chronic health conditions. Unfortunately, children with chronic health conditions have lower levels of physical activity compared to their healthy peers due to multiple restrictions in physical activities and therefore tend to have lower levels of physical activity compared with their peers. This paper describes the protocol for Move to Improve, a pragmatic trial of an individualised physical activity intervention for children with chronic health conditions.

Methods and analysis

Using the RE-AIM framework, this study aims to test the feasibility of Move to Improve, an 8-week hospital-based individualised physical activity intervention. We will recruit 100 children aged 5–17 years who are diagnosed with type 1 diabetes, cancer, postburn injuries and cerebral palsy to a single-arm, pragmatic feasibility trial. The primary outcomes (objective moderate to vigorous physical activity, quality of life and goal attainment) and secondary outcomes (including aerobic capacity, body composition, motor function, grip strength and psychosocial outcomes) will be assessed at baseline, post intervention and at 6-month and 12-month follow-ups. We will conduct semistructured interviews with participants and their primary caregiver at a 2-month follow-up to capture aspects of feasibility. Quantitative data will be reported descriptively, and qualitative data will be analysed using thematic analysis. Data gathered from this study will inform service decision-making and future trials.

Ethics and dissemination

The study has received ethics approval from the Government of Western Australia Child and Adolescent Health Service Human Research Ethics Committee (RGS6677). Findings of this research will be communicated to the public through peer-reviewed publications, conference presentations, reports, infographics and information sheets. Modifications to the protocol will be outlined in the trial registry and journal publications. Authorship will be in accordance with the International Committee of Medical Journal Editors.

Trial registration number

Australian and New Zealand Clinical Trials Registry Number: ACTRN12624000836538.

From policy to action: a document content analysis reviewing the adoption of the healthcare inequalities programme in local health system plans in England

Por: Elliott · H. · Tozer · C. · Fenton · A. · Powers · C. · Lines · C. · Hill · M. · Owolabi · B. · Ford · J. A.
Objectives

This analysis aimed to explore how local health system strategies and plans seek to tackle health and care inequalities and address national policies. Specifically, the analysis considered alignment with five national priority areas: restoring services inclusively, mitigating digital exclusion, ensuring the completeness and timeliness of datasets, accelerating preventative programmes and strengthening leadership and accountability. In addition, the analysis explored the extent to which systems are engaging with the Core20PLUS5 approach, which targets the most deprived 20% of the population (‘Core 20’) and population groups experiencing disproportionately poor access, outcomes or experiences of care (‘PLUS’).

Design and setting

Integrated Care Systems (ICSs) are statutory partnerships that bring together healthcare, social care, local government and wider system organisations to collaboratively address the root causes of ill health and health inequalities. We conducted a document analysis of available ICS strategies, 5-year plans and health inequalities plans published in England between 1 January 2022 and 31 July 2023. A total of 43 strategy documents, 38 5-year plans and 7 health inequalities plans were analysed. A data extraction framework was used to guide reviewers and independent quality assurance was completed to ensure internal validity, intrarater reliability, and reproducibility of the project.

Results

The analysis highlighted good alignment with national healthcare inequalities policies and local approaches to tackling healthcare inequalities, with the majority of systems citing the Core20PLUS5 framework. There was notable variation between systems on the adoption of the framework with the children and young people’s framework being less widely considered than the adult’s framework. Across systems, equity-focused tools were widely used, and numerous systems had developed outcome frameworks to monitor progress. Leadership for health inequalities was strengthened with senior leadership roles being established to hold integrated care boards accountable for improving access, experiences and outcomes. However, competing priorities, particularly concerning implementations of new organisational models and multiple national priorities, were evident within the plans which may challenge progress on reducing health and healthcare inequalities.

Conclusions

The review concluded that while progress has been made in adopting national healthcare inequalities policies and steers, significant variation exists between systems, possibly reflecting local population needs and varying levels of maturity of the systems across England. The review highlights the need for further evaluations at both national and local levels, allowing for further development of the systems. Additionally, consistent and sustainable funding and more robust training for health inequalities leadership roles is needed to ensure equitable access, experience and outcomes.

Initiatives to support nursing workforce sustainability: a rapid umbrella review protocol

Por: Murphy · G. T. · Sampalli · T. · Elliott-Rose · A. · Martin-Misener · R. · Sim · M. · Indar · A. · Murdoch · J. · Hancock · K. · MacKenzie · A. · Chamberland-Rowe · C. · MacInnis · M. · Murphy-Boyle · K. · Lownie · C. · Salmaniw · S.
Introduction

The COVID-19 pandemic has made long-standing nursing workforce challenges apparent on an international scale. Decision-makers must develop multi-pronged approaches to foster the development and maintenance of a strong nursing workforce to support health systems. These approaches require attendance to recruitment and retention initiatives that show promise for stabilising the nursing workforce now and into the future.

Methods and analysis

Searches were conducted across MEDLINE, Embase, CINAHL and Scopus from January 2014 up to 11 March 2024. This rapid umbrella review protocol is guided by the Joanna Briggs Institute scoping review methodology and adheres to Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols guidelines. The research question guiding this review is: what structures have healthcare systems put in place to stabilise, support and sustain the nursing workforce? This review will include existing reviews of nursing workforce initiatives with outcomes that impact nursing recruitment and retention. Results will support local health transformation including the development of a jurisdictional nursing workforce stabilisation strategy. Findings from this review will be relevant for the design, refinement and implementation of nursing workforce sustainability strategies in countries around the globe and may apply to strategies for other healthcare workers.

Ethics and dissemination

Institutional research ethics board exemption was received. The research team is supported by an advisory group that includes provider and patient partners. The results from this study will inform the Nursing Workforce Strategy for the province of Nova Scotia as part of a larger Canadian Institutes of Health Research-funded project. They will also inform broader planning and strategy in Canada through integration with other evidence-generation activities such as comparative policy analyses and workforce planning exercises. Finally, the results will be published in a peer-reviewed journal.

Review registration number

Registered through Open Science Framework: https://doi.org/10.17605/OSF.IO/CUJYK

What are the Aboriginal worldviews of disability in the Fitzroy Valley? Aboriginal Participatory Action Research to develop strategies for decolonising disability services

Por: Stubbs · T. · Bedford · M. · Bear · E. · Carter · E. · Pickard · A. · Davies · J. · Thomas · S. · Martiniuk · A. L. C. · Elliott · E. J. · Rice · L. J.
Objectives

Aboriginal and Torres Strait Islander people living with disability have unequal access to health and disability support services. The impacts of colonialism and the deficit-based, Western medical model of disability have been identified as barriers to services in remote Aboriginal communities. This study explored different perceptions of disability and identified strategies to help bridge the gap between Aboriginal community members in the Fitzroy Valley and Western health and disability support services.

Design

Aboriginal Participatory Action Research approach with in-depth interviews. Transcripts were analysed using reflexive thematic analysis. Preliminary results were presented to community representatives for contextualisation, validation and to co-design recommendations.

Setting

Fitzroy Valley in the Kimberley region, Western Australia.

Participants

Aboriginal community members with lived experience of disability (n=7) and health and disability support service providers (n=12).

Results

Eight themes were identified: (1) Aboriginal kinship systems are a community strength and support for people living with disability; (2) Aboriginal people from the Fitzroy Valley perceive disability as a social construct; (3) Western medical model of disability differs from Aboriginal perceptions of disability; (4) Aboriginal people from the Fitzroy Valley perceive different types of disabilities in various ways; (5) good awareness of fetal alcohol spectrum disorder in the Fitzroy Valley, but more education is wanted; (6) focus on functional needs and supports for disability; (7) barriers to disability services and (8) decolonise disability services. Community co-designed recommendations focus on centring the Aboriginal worldviews of disability in the Fitzroy Valley.

Conclusions

Decolonising disability services is needed to improve access for Aboriginal and Torres Strait Islander communities. This should involve adapting the current Western medical model of services to enable strengths-based diagnostic and support services that align with Aboriginal and Torres Strait Islander kinship systems, cultures and ways of being. Community leadership must play a central role in this shift.

Health and well-being of children and adolescents living in the Kimberley region of Western Australia: a scoping review protocol

Por: Cannon · L. · Carter · E. · Davies · J. · Thomas · S. · Elliott · E. J. · Rice · L. J.
Introduction

Aboriginal people in the Kimberley are concerned that scientific research, government Inquiries and Royal Commissions are not adequately informing policy and service design. In this protocol paper, we outline our proposed scoping review to identify and provide a broad overview of scientific literature regarding the health, well-being, mental health, disability, education and social outcomes of children and adolescents living in the Kimberley region of Western Australia and the recommendations that came from them.

Methods and analysis

This scoping review is guided by Arksey and O’Malley’s (2005) methodological framework. We will conduct a comprehensive search across multiple databases using several search engines. Inclusion criteria were established to inform the selection of papers to be included in the review. After de-duplication, all titles and abstracts will be reviewed, followed by full-text screening. A second reviewer will independently screen 20% of the titles, abstracts and full texts. Two reviewers will discuss discrepancies, and a third reviewer will resolve any disagreements that may arise. We will use a data extraction template in Covidence to systematically extract relevant data.

Ethics and dissemination

This scoping review does not require ethics approval, as we are investigating the breadth of existing literature regarding the outcomes of children and adolescents in the Kimberley, Western Australia. The scoping review results will be published in peer-reviewed journal(s) and shared with relevant policymakers to help inform future policies and service improvements and designs in the region.

Arrhythmia burden, symptoms and quality of life in female and male endurance athletes with paroxysmal atrial fibrillation: a multicentre cohort study in Norway, Australia and Belgium

Por: Apelland · T. · Letnes · J. M. · Janssens · K. · Claessen · G. · Tveit · A. · Sellevold · A. B. · Mitchell · A. · Willems · R. · Onarheim · S. · Enger · S. · Kizilkilic · S. E. · Miljoen · H. · Elliott · A. · Loennechen · J. P. · La Gerche · A. · Myrstad · M. · The NEXAF Investigators
Objectives

To assess atrial fibrillation (AF) burden, symptoms and quality of life (QoL) in endurance athletes with paroxysmal AF.

Design

Prospective cohort study.

Setting and participants

Otherwise healthy endurance athletes with paroxysmal AF in Norway, Australia and Belgium. The current study presents baseline measurements collected before the intervention of a randomised controlled trial on effects of individually tailored training adaptation.

Methods

AF burden (percentage time in AF) was measured by insertable cardiac monitors (Confirm Rx, Abbott). AF-related symptoms and QoL were assessed using the Atrial Fibrillation Effect on QualiTy-of-Life Questionnaire (AFEQT) with any score

Results

43 athletes (age 57±10 (mean±SD), range 33–75 years, 3 women) were included. The athletes were monitored for 50±18 days. Median AF burden was 0.18% (IQR 0%–2.6%). Out of 29 athletes with at least one AF episode, 21 (72%) had AF episodes >60 min. 13 athletes (30%) had AFEQT overall score 60 min were associated with reduced QoL (mean AFEQT score 78 vs 90, p=0.001 and 78 vs 90, p=0.001, respectively). There were large individual variations between the athletes concerning AF burden, symptoms and QoL.

Conclusions

Although most athletes were still competing, more than half had troublesome symptoms. One-third had reduced QoL, which was associated with higher AF burden and longer duration of AF episodes. Variations between the athletes highlight the need for individually tailored AF management in athletes with paroxysmal AF.

Trial registration number

NCT04991337.

Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study

Por: Okpere · A. · Samuel · S. · King-Shier · K. · Hamiwka · L. · Elliott · M.
Objectives

We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers.

Design

A qualitative study using semistructured interviews. Data were analysed using reflexive thematic analysis. We coded transcripts in duplicate and developed themes that integrate key concepts across roles.

Setting

Southern Alberta, Canada.

Participants

A purposive sample of children aged 8–18 years, with SSNS and their caregivers from a paediatric nephrotic syndrome cohort.

Results

28 individuals (10 children and 18 caregivers) participated in this study. All had experienced a relapse after initial diagnosis and steroid treatment. Participants identified how their experiences with SSNS treatments influenced their willingness to accept further steroids and other second-line agents. Findings are elaborated across the following four themes: (1) reluctant acceptance of steroids (steroid aversion, lack of personalised steroid dosing, altered self-regulation and acknowledging steroid effectiveness); (2) coping with unexpected relapses (repeating the cycle, restricted life participation and tempered optimism); (3) uncertainty about second-line therapies (striving for stability, cumulative burden of adverse effects and exploring alternatives) and (4) directing attention to unmet treatment needs and priorities (mechanistic approaches to therapy, steroid minimisation, child and family involvement and enhanced social supports).

Conclusions

Children with SSNS and their caregivers expressed a dislike of steroids and a desire for individualised treatment protocols. Investigation into therapeutic alternatives for SSNS should integrate patients’ preferences, values and care priorities.

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