Paediatric population screening for type 1 diabetes is emerging internationally. It is critically important to understand the acceptability of screening to inform these initiatives. In this systematic review, we aimed to assess the psychosocial impact, acceptability and ethics of screening for paediatric type 1 diabetes. We searched MEDLINE, EMBASE, APA PsycInfo, ASSIA, CINAHL, Web of Science, Scopus, and included quantitative, mixed methods and qualitative articles until 25 November 2025. We assessed the emotional, cognitive and behavioural implications, acceptability or ethics of type 1 diabetes early detection for parents and/or children. We used the mixed methods appraisal tool and critical appraisal skills checklists for quality assessment. We performed a mixed methods evidence synthesis, identifying key themes from qualitative data and merging with quantitative data to generate meta-inferences. Seventy articles (12 qualitative, 57 quantitative and one mixed methods) involving 62,244 parents and 6363 children aged <18 years were included. Seven articles (10.0
Introduction and Objective: There is no validated and reliable survey to assess the psychosocial impact of paediatric screening for T1D on families. We aimed to develop and validate a novel self-administered measure assessing the psychosocial impact on daily functioning, understanding of the results and broader lived experience. Methods: Individual interviews with parents and healthcare professionals were conducted and analysed for the key themes, using a standardised topic guide. An iterative survey development process included multiple versions of the survey, followed by statistical validation against a number of psychosocial measures assessing emotional state, wellbeing and quality of life. Final survey items were refined via cognitive debriefing interviews for acceptability, ease of completion and comprehension. Results: Thirty adults, aged ≥18 years took part in 1:1 interviews. Interview duration was 60-90 minutes (mean 70 minutes). Sixty-six adults completed the statistical validation survey, age range 21-67 years, 71% female, 57% white, 76% married/co-habiting and 90% college/university degree or higher degree educated. Child’s age, where reported (n=31) was 3-30 years. Participants were located across Europe, India, Pakistan, Saudi Arabia, Rwanda, the USA and UK. Exploratory Factor Analyses (EFA) evaluated the factor structure of the initial 19-item measure. Items were removed due to low item-to-total correlations, low commonalities and >50% endorsed strongly agree. The final 12-item measure demonstrated reliability (Cronbach’s α=0.84). The two subscales reflected Positive Impact of screening (6 items, α=0.86, M=24.0±4.9, range=11-30) and Negative Impact of screening (6 items, α=0.85, M=20.7±4.9, range=6-30). Conclusion: This novel questionnaire is a valid, robust and reliable assessment of psychosocial factors associated with screening for T1D. Disclosure K. Barnard-Kelly: Research Support; Current; Abbott Diabetes, Dexcom, Inc. J. Shapiro: Research Support; Current; American Diabetes Association, Leona M. and Harry B. Helmsley Charitable Trust, Eli Lilly and Company. C. Woombs: None. E. Barnard: None. O. Boiko: None. J. Vercauteren: None. C. Mathieu: Advisory Panel; Current; Abbott Diagnostics, Dexcom, Inc. Board Member; Current; European Association for the Study of Diabetes. Advisory Panel; Current; Novo Nordisk, Eli Lilly and Company, Sanofi, Vertex Pharmaceuticals Incorporated, Medtronic. A. Omar Alsaleh: None. C. Nicholls: Employee; Current; Sanofi. A. Mahieu: Employee; Current; Sanofi. S. Greenfield: None. L.M. Quinn: None. R. Dias: Other - Speaker fee; Ended; Sandoz International GmbH. Advisory Panel; Ended; Sanofi. Other - speaker fee; Ended; Sanofi. P. Narendran: Speaker's Bureau; Current; Lilly. Other - Speaker and advisory board; Current; Sanofi. Funding This work is supported by the Innovative Health Initiative Joint Undertaking (IHI JU) under grant agreement No 101132379 (EDENT1FI). The JU receives support from the European Union’s Horizon Europe research and innovation programme, The Leona M. and Harry B. Helmsley Charitable Trust, Breakthrough T1D, EFPIA, COCIR, Vaccines Europe, EuropaBio and MedTech. Additional funding is provided to associated UK partners through the UK Research and Innovation (UKRI) Guarantee Fund.
AIM:The EarLy Surveillance for Autoimmune (ELSA) study aims to explore the feasibility and acceptability of UK paediatric general population screening for type 1 diabetes. METHODS:We aim to screen 20,000 children aged 3-13 years for islet-specific autoantibodies through dried blood spot sample collection at home, hospital or community settings. Children with two or more autoantibodies are offered metabolic staging via oral glucose challenge testing. Feasibility assessments will compare recruitment modalities and uptake according to demographic factors (age, gender, ethnicity, level of deprivation and family history of diabetes) to determine optimal approaches for general population screening. The study is powered to identify 60 children (0.3%) with type 1 diabetes (stage 1-3). Parents are invited to qualitative interviews following ELSA completion (child screened negative or positive, single autoantibody or multiple, stage 1-3) to share their screening experience, strengths of the programme and any areas for improvement (acceptability assessments). Parents who decline screening or withdraw from participation are invited to interview to explore any concerns. Finally, we will interview professional stakeholders delivering the ELSA study to explore barriers and facilitators to implementation. CONCLUSION:Early detection of type 1 diabetes allows insulin treatment to be started sooner, avoids diagnosis as an emergency, gives families time to prepare and the opportunity to benefit from future prevention trials and treatments. ELSA will provide essential feasibility and acceptability assessments for UK general population screening to inform a future national screening programme for paediatric type 1 diabetes.
INTRODUCTION:This work describes a secondary analysis of a qualitative data set originally used to understand parent participants' preferences for the design and implementation of a screening programme for paediatric Type 1 diabetes (T1D). From this, their spontaneous preferences for peer support emerged, described here in the context of existing peer support programmes for the newly diagnosed alongside suggestions for their incorporation into screening programmes for T1D and a range of other conditions. METHODS:Data were collected from semi-structured interviews conducted with parents of children aged 3-13 years to explore their expectations, perceptions and preferences of a T1D paediatric screening programme. A secondary analysis of interviews from participants who spontaneously raised preferences for peer support was used to populate a novel framework informed by NHS England's key principles for the same, namely, Shared experiences and reciprocated support, Accessibility and inclusivity and Person-centred and integrated peer support. RESULTS:Parents in 29 of 33 interviews spontaneously described the potential value of peer support if receiving a result indicating a positive (presymptomatic T1D result) from a screening programme. Specifically, the value of 'Shared experiences and reciprocated support' in terms of emotional support and reassurance, and access to more directly interpretable and relevant information related to the condition; 'Accessibility and inclusivity' relating to access to a community of similar individuals, whether in person or online; 'Person-centred and integrated peer-support' and the need for support reflecting the changing need of the child and the integration of peer support with clinical care. CONCLUSIONS:The needs of peer support described by parents involved in T1D paediatric screening appear to be shared with those of families with children diagnosed with a range of life-altering conditions. Although the needs of peer support for paediatric screening may differ across conditions, our findings are a valuable starting point for its design both in T1D and other examples of similar population screening programmes. PATIENT OR PUBLIC CONTRIBUTION:Patients and the public have been involved throughout the design of the ELSA study and have worked with us to inform the study process. They contributed to the design and content of patient-facing materials, the content of our topic guides and the analysis and interpretation of our findings.
Objectives This study evaluated the scale-up of a remote monitoring service, capturing monthly Rheumatoid Arthritis Impact of Disease scores and patient-generated text messages, for patients with rheumatoid arthritis (RA; in remission or with low disease activity) attending routine outpatient clinics across six hospitals. We explored patients and staff experiences and implementation outcomes. Methods A pragmatic, mixed methods approach was used, with active patient involvement throughout. We undertook a rapid review, analysed service-level data, and conducted a patient survey and patient and staff interviews, informed by the Capability, Opportunity, Motivation, Behaviour (COM-B) and Exploration, Preparation, Implementation, Sustainment (EPIS) theoretical frameworks. Results The review included 37 articles, covering themes of patient and clinician acceptability, engagement, feasibility and clinical impact. Service-level data (n = 202) showed high levels of patient engagement with the service. The patient survey (n = 155) showed patients felt the service was easy to use, had confidence in it and felt it improved access to care. Patient interview (n = 22) findings mirrored those of the survey. Motivating factors included increased responsiveness and ease of contact with clinical teams. Views from staff interviews (n = 16) were more mixed. Some implementation barriers were specific to roll-out sites. Prioritization of staff needs was emphasized. Conclusion Patients were positive about the service and engagement was high. Staff views and engagement were more mixed. Results suggest that equal levels of patient and staff engagement are required for sustainability. These findings further our understanding of the implementation challenges to scaling remote monitoring interventions for patients with rheumatoid arthritis in routine care settings.
Objective Integrated Care Systems (ICSs) mark a change in the English National Health Service to more collaborative interorganisational working. We explored how effective the ICS form of collaboration is in achieving its goals by investigating how ICSs were developing, how system partners were balancing organisational and system responsibilities, how partners could be held to account and how local priorities were being reconciled with ICS priorities.Design We carried out detailed case studies in three ICSs, each consisting of a system and its partners, using interviews, documentary analysis and meeting observations.Setting/participants We conducted 64 in-depth, semistructured interviews with director-level representatives of ICS partners and observed eight meetings (three in case study 1, three in case study 2 and two in case study 3).Results Collaborative working was welcomed by system members. The agreement of local governance arrangements was ongoing and challenging. System members found it difficult to balance system and individual responsibilities, with concerns that system priorities could run counter to organisational interests. Conflicts of interest were seen as inherent, but the benefits of collaborative decision-making were perceived to outweigh risks. There were multiple examples of work being carried out across systems and ‘places’ to share resources, change resource allocation and improve partnership working. Some interviewees reported reticence addressing difficult issues collaboratively, and that organisations’ statutory accountabilities were allowing a ‘retreat’ from the confrontation of difficult issues facing systems, such as agreeing action to achieve financial sustainability.Conclusions There remain significant challenges regarding agreeing governance, accountability and decision-making arrangements which are particularly important due to the recent Health and Care Act 2022 which gave ICSs allocative functions for the majority of health resources for local populations. An arbiter who is independent of the ICS may be required to resolve disputes, along with increased support for shaping governance arrangements.
Background Modern treat-to-target approaches to rheumatoid arthritis (RA) involve frequent monitoring of disease activity with the goal of disease remission or a low disease activity. The Rheumatoid Arthritis Impact of Disease (RAID) is a multidimensional, validated patient-reported outcome measure that covers seven domains, which has been found to discriminate between active and non-active disease. Applying smartphone apps to monitoring of RA is described as an innovation which has been implemented in the UK and USA. The proposed study will evaluate the feasibility of scaled implementation of a remote monitoring service based on RAID for eligible patients with RA at three NHS organisations (trusts) in south east London, UK. Methods Pragmatic formative service evaluation study informed by implementation theory and incorporating the perspectives of RA service users throughout. The study will follow a multi-method approach. Rapid evidence review will be carried out to identify implementation approaches used in similar services. Quantitative data will be collected from a cross-sectional sample of service users through a web-based questionnaire assessing patient satisfaction, as well as service-level data routinely collected by trusts and from the remote monitoring system and documentation produced in developing and implementing the remote monitoring service. Qualitative data will be collected from approximately 30 clinical and non-clinical staff and 20-30 patients purposively sampled to conduct semi-structured interviews to explore their perspectives on remote monitoring in RA. The evaluation will be supported by established implementation frameworks, including EPIS (Exploration, Preparation, Implementation and Sustainment) and COM-B (Capability-Opportunity-Motivation-Behaviour), which will be used to guide data generation and to inform the framework analysis of qualitative data. Discussion This pragmatic study will enhance the understanding of implementation process and outcomes and will explore the potential to scale up the remote monitoring system in RA. A larger scale hybrid study can be designed based on the dataset the current study will produce to offer definitive clinical and implementation evaluation.
Patient flow in emergency departments (EDs) is notoriously difficult to manage efficiently. While much of the attention has focused on the procedures, protocols and pathways in which patients receive their first hours of care, less attention has been paid to the relational factors that make it happen. Our study is the first, to our knowledge, to consider the role of interprofessional barriers, defined as suboptimal ways of working, as perceived by ED staff in patient flow management. Drawing on 19 interviews with hospital staff in an acute tertiary trauma center hospital in England, we established three flow-related types of interprofessional barriers: ED teamwork barriers, performance-driven coordination barriers, and referral-related collaborative barriers. Knotworking was recognized as a form of interactions and asset to teamworking, coordination, and collaboration. Identifying processes such as chasing, escalating, and advocating enabled our investigation to highlight a very complex set of interprofessional interactions, and signpost what the suboptimal practices of flow management are. Our analysis holds promise for hospitals beyond the National Health Service in England.
Background: The threat of antimicrobial resistance has led to intensified efforts to reduce antibiotic utilisation, but serious bacterial infections are increasing in frequency. Objectives: To estimate the risks of serious bacterial infections in association with lower antibiotic prescribing and understand stakeholder views with respect to safe antibiotic reduction. Design: Mixed-methods research was undertaken, including a qualitative interview study of patient and prescriber views that informed a cohort study and a decision-analytic model, using primary care electronic health records. These three work packages were used to design an application (app) for primary care prescribers. Data sources: The Clinical Practice Research Datalink. Setting: This took place in UK general practices. Participants: A total of 706 general practices with 66.2 million person-years of follow-up from 2002 to 2017 and antibiotic utilisation evaluated for 671,830 registered patients. The qualitative study included 31 patients and 30 health-care professionals from primary care. Main outcome measures: Sepsis and localised bacterial infections. Results: Patients were concerned about antimicrobial resistance and the side effects, as well as the benefits, of antibiotic treatment. Prescribers viewed the onset of sepsis as the most concerning potential outcome of reduced antibiotic prescribing. More than 40% of antibiotic prescriptions in primary care had no coded indication recorded across both Vision® and EMIS® practice systems. Antibiotic prescribing rates varied widely between general practices, but there was no evidence that serious bacterial infections were less frequent at higher prescribing practices (adjusted rate ratio for 20% increase in prescribing 1.03, 95% confidence interval 1.00 to 1.06; p = 0.074). The probability of sepsis was lower if an antibiotic was prescribed at an infection consultation, and the number of antibiotic prescriptions required to prevent one episode of sepsis (i.e. the number needed to treat) decreased with age. For those aged 0–4 years, the number needed to treat was 29,773 (95% uncertainty interval 18,458 to 71,091) in boys and 27,014 (95% uncertainty interval 16,739 to 65,709) in girls. For those aged > 85 years, the number needed to treat was 262 (95% uncertainty interval 236 to 293) in men and 385 (95% uncertainty interval 352 to 421) in women. Frailty was associated with a greater risk of sepsis and a smaller number needed to treat. For severely frail patients aged 55–64 years, the number needed to treat was 247 (95% uncertainty interval 156 to 459) for men and 343 (95% uncertainty interval 234 to 556) for women. At all ages, the probability of sepsis was greatest for urinary tract infection, followed by skin infection and respiratory tract infection. The numbers needed to treat were generally smaller for the period 2014–17, when sepsis was diagnosed more frequently. The results are available using an app that we developed to provide primary care prescribers with stratified risk estimates during infection consultations. Limitations: Analyses were based on non-randomised comparisons. Infection episodes and antibiotic prescribing are poorly documented in primary care. Conclusions: Antibiotic treatment is generally associated with lower risks, but the most serious bacterial infections remain infrequent even without antibiotic treatment. This research identifies risk strata in which antibiotic prescribing can be more safely reduced. Future work: The software developed from this research may be further developed and investigated for antimicrobial stewardship effect. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 9. See the NIHR Journals Library website for further project information.
OBJECTIVE:To investigate contemporary patient expectations and experiences of antibiotic prescribing in England.BACKGROUND:Primary care providers' compliance with patient influences has been identified as a motivation for antibiotic-prescribing behaviour. Since 2013, there have been concerted efforts to publicize and address the growing threat of antimicrobial resistance. A fresh qualitative insight into patient expectations and experiences is needed.DESIGN:Qualitative study using semi-structured interviews.SETTING AND PARTICIPANTS:Two English regions, one an urban metropolitan area and the other a town in rural England. Patients who recently consulted for infections were recruited. The information power approach was used to determine the number of participants, yielding a sample of 31 participants.MAIN MEASURES:Thematic analysis was carried out to analyse the interview data.RESULTS:Five themes were identified: beliefs, expectations, experiences of taking antibiotic, experience of antimicrobial resistance and side-effects, and experiences of consultations. The accounts reflected improved public knowledge: antibiotics were perceived to be much-needed medicines that should be prescribed when appropriate. The data showed that patients formed expectations of expectations, trying to read the prescribers' intentions and reflect on the dependency between what prescribers and patients wanted. Patient experiences featured as nuanced and detailed with knowledge of AMR and side-effects of antibiotics in the context of positive consultation experiences.CONCLUSIONS:The study highlighted complex interplays between adherence to antibiotics and consuming antibiotics in reflexive, informed ways. Ensuring that present and future patients are informed about potential benefits and harms of antibiotic use will contribute to future antimicrobial stewardship.
antibiotic prescriptions them according to the medical conditions on the same date. ► The study relied on medical conditions recorded by healthcare professionals in primary care. ► Missing and misclassified information might result in bias, which might generally be towards a null finding. ► The study aimed to evaluate associations at the general practice level and the results do not exclude the possibility of association at the individual patient level. AbStrACt Objective This study evaluated whether serious bacterial infections are more frequent at family practices with lower antibiotic prescribing rates. Design Cohort study. Setting 706 UK family practices in the Clinical Practice Research Datalink from 2002 to 2017. Participants 10.1 million registered patients with 69.3 million patient- years’ follow- up. Exposures All antibiotic prescriptions, subgroups of acute and repeat antibiotic prescriptions, and proportion of antibiotic prescriptions associated with specific- coded indications. practices with lower total antibiotic prescribing might have more frequent occurrence of serious bacterial infections overall. Improving the recording of infection episodes has potential to inform better antimicrobial stewardship in primary care.
COVID-19 has thrown NHS procurement into the limelight, but the shortage of personal protective equipment (PPE) has complex origins. This article explores the long-lasting struggle for centralisation in NHS procurement and its impact on the current PPE crisis.
ObjectiveThis study evaluated whether serious bacterial infections are more frequent at family practices with lower antibiotic prescribing rates.DesignCohort study.Setting706 UK family practices in the Clinical Practice Research Datalink from 2002 to 2017.Participants10.1 million registered patients with 69.3 million patient-years’ follow-up.ExposuresAll antibiotic prescriptions, subgroups of acute and repeat antibiotic prescriptions, and proportion of antibiotic prescriptions associated with specific-coded indications.Main outcome measuresFirst episodes of serious bacterial infections. Poisson models were fitted adjusting for age group, gender, comorbidity, deprivation, region and calendar year, with random intercepts representing family practice-specific estimates.ResultsThe age-standardised antibiotic prescribing rate per 1000 patient-years increased from 2002 (male 423; female 621) to 2012 (male 530; female 842) before declining to 2017 (male 449; female 753). The median family practice had an antibiotic prescribing rate of 648 per 1000 patient-years with 95% range for different practices of 430–1038 antibiotic prescriptions per 1000 patient-years. Specific coded indications were recorded for 58% of antibiotic prescriptions at the median family practice, the 95% range at different family practices was from 10% to 75%. There were 139 759 first episodes of serious bacterial infection. After adjusting for covariates and the proportion of coded consultations, there was no evidence that serious bacterial infections were lower at family practices with higher total antibiotic prescribing. The adjusted rate ratio for 20% higher total antibiotic prescribing was 1.03, (95% CI 1.00 to 1.06, p=0.074).ConclusionsWe did not find population-level evidence that family practices with lower total antibiotic prescribing might have more frequent occurrence of serious bacterial infections overall. Improving the recording of infection episodes has potential to inform better antimicrobial stewardship in primary care.
PURPOSE:The emergence of antimicrobial resistance has led to increasing efforts to reduce unnecessary use of antibiotics in primary care, but potential hazards from bacterial infection continue to cause concern. This study investigated how primary care prescribers perceive risk and safety concerns associated with reduced antibiotic prescribing. METHODS:Qualitative study using semistructured interviews conducted with primary care prescribers from 10 general practices in an urban area and a shire town in England. A thematic analysis was conducted. RESULTS:Thirty participants were recruited, including twenty-three general practitioners, five nurses and two pharmacists. Three main themes were identified: risk assessment, balancing treatment risks and negotiating decisions and risks. Respondents indicated that their decisions were grounded in clinical risk assessment, but this was informed by different approaches to antibiotic use, with most leaning towards reduced prescribing. Prescribers' perceptions of risk included the consequences of both inappropriate prescribing and inappropriate withholding of antibiotics. Sepsis was viewed as the most concerning potential outcome of non-prescribing, leading to possible patient harm and potential litigation. Risks of antibiotic prescribing included antibiotic resistant and Clostridium difficile infections, as well as side effects, such as rashes, that might lead to possible mislabelling as antibiotic allergy. Prescribers elicited patient preferences for use or avoidance of antibiotics to inform management strategies, which included educational advice, advice on self-management including warning signs, use of delayed prescriptions and safety netting. CONCLUSIONS:Attitudes towards antibiotic prescribing are evolving, with reduced antibiotic prescribing now being approached more systematically. The safety trade-offs associated with either use or non-use of antibiotics present difficulties especially when prescribing decisions are inconsistent with patients' expectations.
BackgroundIncreased overcrowding in the emergency department is a potential threat to the quality and safety of patient care. Innovative ways are needed to explore overcrowding, the variables affecting patient flow and interventions necessary for future flow improvement.Aims and objectivesThe aim of this review is to explore nurses’ role(s) and their contribution to maintaining patient flow in acute hospitals through emergency departments.MethodologyA systematic review of mixed studies (qualitative, quantitative and mixed-method) using narrative synthesis was undertaken. Five major databases—PubMed, CINHAL, BNI, ASSIA and SCOPUS—were searched to identify appropriate primary and secondary studies. Selected studies were critically appraised with a modified CASP tool. Data extraction and analysis was undertaken using narrative synthesis.ResultsIn total, 34 articles (31 primary studies and three systematic reviews) met the inclusion criteria. This systematic review is informed by studies from several countries, including the UK, US, Australia, Canada, and the Netherlands. The qualitative arm of this review explored both the role and function of nurses, as well as their experiences and perspectives of the patient flow process, while the quantitative arm investigated nurses’ contribution to patient flow in terms of length of stay (LOS), triage time, and other associated performance data.FindingsNurses’ contribution to patient flow spanned their operational, strategic, and expanded roles. Strategic and expanded nursing roles offered the possibility of reducing LOS, triage time, and ED crowding in addition to improving the experience of patients and staff. Nurses in operational roles deployed experiential knowledge pertaining to several invisible aspects of patient flow challenges thereby facilitating decision-making for strategic flow improvement. The experiential knowledge and skills of these nursing roles are central to the success of flow-related interventions. However, the effects of emotional labour (e.g. conflicts, frustrations) of patient flow processes on nurses are significant and may have unaccounted for transaction costs and consequences that need acknowledging in order to be addressed by managers and policy makers.Conclusions and recommendationsPolicy-makers and senior managers need to capitalise on nurses’ experiential knowledge and skills to enhance the strategic design and development of flow management in acute hospitals. Recommendations from this review have potential to deploy those skills and knowledge in flow improvement.
BackgroundThis chapter describes analyses of data from the GP Patient Survey investigating which patients have a preference for seeing a particular GP and how successful they are in seeing that doctor. We report these trends over a 4-year period. In addition, we undertook analyses to examine whether or not patients’ expectations of who they wished to see and who they did see (a doctor or a nurse) influenced their assessment of the consultation.Methods