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Background: Awareness of paediatric-specific predictors of damage in Childhood-lupus is needed to inform mitigation measures., Objectives: To ascertain how clinical and demographic variables correlate with damage accrual and identify predictors of damage., Methods: Analysis included UK JSLE Cohort Study participants. Univariable and multivariable Prentice-Williams-Peterson models investigated how demographic and clinical factors influenced hazards of new damage. Analyses were performed across the entire cohort, in patients with minimal disease activity marked by a time-adjusted average SLEDAI-2K score (AMS)≤2, low activity (AMS ≤ 4), moderate-high activity (AMS > 4) and those with no corticosteroids., Results: Within the entire cohort (n = 430), factors associated with damage included: any methylprednisolone (Hazard Ratio, HR 2.20, [CI 1.33-3.62]), time-adjusted mean Physicians Global Assessment (PGA) (HR 2.87, [CI 1.48-5.56]) and AMS score (HR 1.13, [CI 1.03-1.24], all p< 0.05). Within the low activity subgroup, any methylprednisolone (HR 2.61, [CI 1.04-6.53]) and time-adjusted mean PGA (HR 3.41, [CI 1.52-7.76]) were associated with damage (both p< 0.05). Within the moderate-high activity subgroup, any methylprednisolone (HR 2.29, [CI 1.31-4.00]), time-adjusted mean PGA (HR 2.66, [CI 1.20-5.87]) and AMS score (HR 1.15, [CI 1.03-1.29]), were predictive of damage (all p< 0.05). Baseline organ damage was predictive of subsequent damage accrual in the minimal activity (HR 1.33, CI [1.78-8.08]) and no corticosteroids subgroups (HR 3.64, CI [1.83-7.24], both p< 0.005)., Conclusion: Disease activity levels (AMS/PGA) and proxy indicators (methylprednisolone exposure, baseline damage) were found to be key predictors of damage accrual. This highlights the importance of practical strategies, to reduce disease activity and long-term treatment toxicity, such as treat-to-target., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Despite improved survival rates for childhood cancer, around 60% of survivors suffer lifelong health problems due to their treatment, including fertility issues which account for one third of these problems. Ovarian or testicular tissue cryopreservation can be offered to patients whose cancer treatment puts them at high risk of subsequent subfertility, but it presents unique challenges compared to standard methods of fertility preservation. We report the available information on the experiences of cancer survivors who preserved tissue for future fertility, to support the development of survivorship care informed by recipients' perspectives and experiences to identify future research priorities. We conducted a scoping review following the recommendations of the Joanna Briggs Institute and the Systematic Reviews and Meta-Analyses Extension for Scoping Review (PRISMA-ScR). From 1956 unique records, 5 met our inclusion criteria. No literature was found reporting on the experiences of people who stored testicular tissue. We found that young women who had stored ovarian tissue faced complex emotional and ethical dilemmas in reproductive decisions post cancer and strongly desired their own biological children. This scoping review is the first to report beyond clinical outcomes by focusing specifically on the self-reported outcomes of patients who preserved ovarian tissue in early life after a cancer diagnosis. Separate consideration of the needs of patients with stored fertility tissue is needed to enable personalized survivorship care. Patient-reported outcomes are also needed from individuals with stored testicular tissue, parents who consented to their child's tissue storage, and the healthcare professionals involved in their care., Competing Interests: Conflicts of interest No conflicts of interest., (Copyright © 2024. Published by Elsevier Inc.)

Introduction: COVID-19 catalysed a rapid move to provide care away from the hospital using online communication platforms. Technology enabled care (TEC) continues to be an important driver in progressing future healthcare services. Due to the complex and chronic nature of conditions seen within paediatric rheumatology, TEC may lead to better outcomes. Despite some growth in published literature into the adoption of TEC in paediatric rheumatology, there is limited synthesis. The aim of this review is to provide a comprehensive understanding and evaluation of the adoption of TEC by patients in paediatric rheumatology services, to establish best practices., Methods and Analysis: This proposed mixed-methods systematic review will be conducted by searching a wide variety of healthcare databases, grey literature resources and associated charities and societies, for articles reported in English language. Data extraction will include population demographics, technology intervention, factors affecting adoption of intervention and consequent study outcomes. A parallel-results convergent synthesis design is planned, with independent syntheses of quantitative and qualitative data, followed by comparison of the findings of each synthesis using a narrative approach. Normalisation process theory will be used to identify, characterise and explain implementation factors. The quality of included articles will be assessed using the Mixed Methods Appraisal Tool for research papers and the Authority, Accuracy, Coverage, Objectivity, Date, Significance checklist for grey literature. Overall confidence in quality and strength of evidence will be assessed using the Confidence in the Evidence from Reviews of Qualitative Research tool., Ethics and Dissemination: Ethical approval is not required due to the nature of this mixed-methods systematic review. The findings will be disseminated via a peer-reviewed journal, relevant conferences and any other methods (eg, via NHS Trust or NIHR YouTube channels) as advised by paediatric rheumatology patients., Prospero Registration Number: CRD42023443058., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Within the UK, there is a goal that research is embedded into everyday healthcare practice. Currently education provided to students at pre-registration level is theoretical, with little focus on clinical research delivery., Aims: The paper's aim is to report on the development and evaluation of a pre-registration clinical research resource for nursing and midwifery students with direct application to clinical settings and patient care outcomes., Methods: An initial survey assessed whether the learning resource was useful for nursing pre-registration students. Based on the findings, alongside expert stakeholder input, adaptations were made to the learning resources and a second survey re-evaluated the learning resources. Survey findings were analysed using descriptive statistics. Free text responses were thematically grouped., Results: Ninety-seven pre-registration nursing students responded. Most students agreed that they had enjoyed using the resources, had improved understanding of clinical research, anticipated being actively involved in research and would consider a future clinical research role., Conclusions: The learning resources can help overcome barriers to research engagement by nurses and midwives. The results demonstrate that research can be incorporated into clinical, educational and academic roles, highlighting their worth in supporting the clinical research workforce., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2024.)

The objective of this guideline is to provide up-to-date, evidence-based recommendations for the management of SLE that builds upon the existing treatment guideline for adults living with SLE published in 2017. This will incorporate advances in the assessment, diagnosis, monitoring, non-pharmacological and pharmacological management of SLE. General approaches to management as well as organ-specific treatment, including lupus nephritis and cutaneous lupus, will be covered. This will be the first guideline in SLE using a whole life course approach from childhood through adolescence and adulthood. The guideline will be developed with people with SLE as an important target audience in addition to healthcare professionals. It will include guidance related to emerging approved therapies and account for National Institute for Health and Care Excellence Technology Appraisals, National Health Service England clinical commissioning policies and national guidance relevant to SLE. The guideline will be developed using the methods and rigorous processes outlined in 'Creating Clinical Guidelines: Our Protocol' by the British Society for Rheumatology., (© The Author(s) 2023. Published by Oxford University Press on behalf of the British Society for Rheumatology.)

Aims and Objectives: To report on the development, implementation and evaluation of the first year of the National Institute for Health Research 70@70 Senior Nurse Research Leader Programme., Background: Internationally, there is a lack of nursing and midwifery research and policy contribution to healthcare sectors. To address this, funding was obtained for a Senior Nurse and Midwife Research Leader Programme in England. The programme aimed to increase nursing and midwifery research capacity and capability and support the development of future research leaders., Design: The programme had three phases: development, implementation and evaluation. The cohort study's evaluation phase consisted of a survey and qualitative written feedback., Methods: An online survey was sent to cohort members (n = 66). Quantitative survey data was analysed in Survey Monkey. Written feedback asked cohort members to summarise their activities and any challenges. Data were thematically analysed. The "Strengthening the Reporting of Observational Studies in Epidemiology" reporting checklist was used., Results: Thirty-nine (59%) cohort members responded to the survey. Responders valued being part of a network (46%), having protected time (22%) and having workplace autonomy (13%). Challenges reported included difficulties accessing online resources (32%), lack of collaborative opportunities (17%) and organisational barriers (10%). Fifty-six (85%) cohort members submitted the written report. The main themes were "relationship and profile building", "developing capability and capacity", "developing the workforce", "patient and public involvement and engagement" and "quality improvement.", Conclusions: The 70@70 programme has increased the research profile of the nursing and midwifery professions at a local and national level. International healthcare systems can learn from this, by considering optimal ways to provide nurses and midwives with the tools, resources and confidence to actively contribute to research policy and practice., Relevance to Clinical Practice: The initiatives undertaken through year 1 of the programme have created a platform through which research can be incorporated into clinical practice, education and teaching., (© 2020 John Wiley & Sons Ltd.)