Stuart Logan

Background: Mortality risk rises from childhood into early adulthood. Young people with neurodisability (neurological conditions causing functional limitations) may be particularly vulnerable during the transition from paediatric to adult services. Objectives: To estimate all‐cause and cause‐specific mortality risk between the ages of 11–22 years in young people with and without neurodisability in England. Methods: In this national cohort study, we used linked health and education records from ECHILD to follow pupils from age 11 between 2008–09 and 2014–15 to age 22. Neurodisability was identified from hospital admission records before age 11, likely capturing more severe conditions, and supplemented with education data for intellectual disability and autism. Gender‐specific crude cumulative mortality risk and relative differences were estimated using Kaplan–Meier curves and Cox models, with cause‐specific risk estimated using competing‐risks methods. Results: Among 3,601,180 young people, 143,864 (4.0%) had neurodisability. Between the ages of 11–22, 5565 (0.15%) died; 24% had neurodisability. By age 22, cumulative mortality risk was 1.6% (95% confidence interval [CI] 1.4, 1.8) among females with neurodisability versus 0.14% (95% CI 0.13, 0.15) among peers without neurodisability (hazard ratio [HR] 13.88, 95% CI 12.55, 15.35), an absolute risk difference of 1.5% (95% CI 1.3, 1.6). Among males with neurodisability, cumulative risk was 1.3% (95% CI 1.2, 1.4) versus 0.28% (95% CI 0.27, 0.29; HR 5.34, 95% CI 4.94, 5.78) among peers, an absolute risk difference of 1.0% (95% CI 0.9, 1.1). Most deaths among those with neurodisability were from medical causes, with cumulative risks of 1.5% (95% CI 1.3, 1.6; HR 25.87, 95% CI 23.03, 29.07) in females and 1.1% (95% CI 0.96, 1.2; HR 14.70, 95% CI 13.29, 16.26) in males by age 22. Conclusions: Young people with neurodisability had a higher mortality risk than peers between ages 11–22, largely from medical causes, with variation by gender and neurodisability subgroup.

Background: Mortality risk rises from childhood into early adulthood. Young people with neurodisability (neurological conditions causing functional limitations) may be particularly vulnerable during transition from paediatric to adult services. Objectives: To estimate all-cause and cause-specific mortality risk between ages 11 and 22 years in young people with and without neurodisability in England. Methods: In this national cohort study, we used linked health, education, and mortality records from ECHILD to follow pupils aged 11 years in 2008/09-2014/15 from secondary school entry to age 22. Neurodisability was identified from hospital admission records before age 11, likely capturing more severe or complex conditions, and supplemented with education data for intellectual disability and autism. Gender-specific cumulative mortality risk and relative differences were estimated using Kaplan-Meier curves and Cox proportional hazards models adjusted for academic year. Cause-specific cumulative mortality risk was estimated using competing-risks methods. Results: Among 3,601,180 young people, 143,864 (4.0%) had neurodisability. Between ages 11 and 22 years, 5,565 (0.15%) died; 24% had neurodisability. Cumulative mortality risk was 1.6% (95% Confidence Interval [CI] 1.4-1.8%) among females with neurodisability versus 0.14% (95% CI 0.13-0.15%) among peers without neurodisability (Hazard Ratio [HR] 13.9, 95% CI 12.6-15.4). Among males with neurodisability, cumulative risk was 1.3% (95% CI 1.2-1.4%) versus 0.28% (95% CI 0.27-0.29%; HR 5.3, 95% CI 4.9-5.8) among peers. Most deaths in young people with neurodisability were due to medical causes, with cumulative risks of 1.5% (95% CI 1.3-1.6%; HR 25.9, 95% CI 23.0-29.1) in females and 1.1% (95% CI 0.96-1.2%; HR 14.7, 95% CI 13.3-16.3) in males. Conclusions: Young people with neurodisability had higher mortality risk between ages 11 and 22 years than peers, largely from medical causes, with variation by gender and neurodisability subgroup.

Objective: To assess the effectiveness, cost-effectiveness and experiences of switching from intravenous antibiotics to oral antibiotics in neonates with suspected early onset sepsis (EOS). Design: Systematic review. Patients: Clinically stable term and later preterm neonates with suspected EOS. Interventions: Oral antibiotics. Main outcome measures: Mortality and morbidity, cost and resource use, family related and process outcomes and experiences of families and health care professionals. Information sources: We searched Medline, Embase, PsycINFO, HMIC, SPP, CENTRAL, CINAHL and Conference Abstracts (via Web of Science) in April 2025. Database searches were supplemented with citation chasing, contacting authors and website searches. Methods: Screening, data extraction and critical appraisal was performed in duplicate. Due to heterogeneity of outcomes, timepoints and lack of reported data relating to the data distribution, a narrative synthesis was performed. The review was informed by public collaborators interested in maternal health. Results: After de-duplication, 3803 titles and abstracts were screened for relevance with 27 assessed for eligibility at full text. Following title and abstract screening, one randomised controlled trial (504 neonates) and three observational studies (795 neonates) were included. Length of stay was reduced by between 1 to 4 days across all four studies. No differences were observed between study arms in those reporting on readmission rates, reinfection or mortality. Conclusions: This systematic review suggests that switching clinically stable term and late pre-term neonates with suspected EOS from intravenous to oral antibiotics can reduce hospital stay and healthcare costs without increasing morbidity, mortality, or readmission. Key messages: What is already known on this topic Intravenous antibiotics are commonly prescribed in neonatal care to treat suspected early onset sepsis (EOS). Distinguishing infectious from non-infectious cases is difficult, often leading to unnecessary intravenous antibiotic treatment in uninfected neonates. A recent systematic review of oral antibiotics for neonatal infections concluded that in general, adequate serum levels can be achieved after oral administration of antibiotics in neonates. What this study adds There is promising evidence that switching clinically well, term and late preterm neonates with suspected EOS from intravenous to oral antibiotics reduces duration of hospital stay with no impact on readmissions, clinical deterioration, mortality, or reinfection. How this study might afect research, practice or policy Future research should focus on longer-term outcomes such as effects on the gut microbiome and later childhood health, evaluations of cost-effectiveness, incorporating both healthcare system and family perspectives, and ensure that equity considerations are fully addressed.

Introduction: Schools worldwide balance whole-class teaching with additional provision for children with special educational needs or disability (SEND). Robust evidence on equity and effectiveness of SEND provision is essential to address growing demand and rising costs globally. Objectives: We used the Education and Child Health Insights from Linked Data (ECHILD) database to examine variation in recorded SEND provision in England and its impact on health and educational outcomes in primary schools and mixed methods to understand the SEND service context. Methods: We followed children from birth to age 11 years to examine social, school, and area-level factors associated with SEND provision among the general population and among children with health conditions likely to affect learning. Using target trial emulation, we estimated the impact of SEND provision on hospital admissions, school absences and attainment. We surveyed and interviewed young people, parents, and professionals and reviewed information about services to understand SEND processes and contexts. Results: Of 3.8 million children born 2004 to 2013, 30% had SEND provision recorded by age 11. Health conditions are only partially associated with SEND provision, which was also related to male gender, social disadvantage, low attainment and type of school. SEND provision reduced rates of unauthorised absences but did not reduce hospital admissions or improve attainment. Mixed methods studies highlighted benefits of early, responsive support, challenges posed by limited capacity, harms caused by delayed or inadequate provision, and need for parent advocacy to access SEND provision. Discussion: Weak evidence of benefits of SEND provision in causal analyses is likely to reflect unmeasured confounding, insensitive outcomes, and poor measures of the content of SEND provision in ECHILD data. SEND policies require stronger evidence from collaborative analyses across jurisdictions, based on more granular data on need, provision, confounders and outcomes, combined with experimental methods and contextual evaluation.

Background: Patient‐reported outcome measures (PROMs) are used to evaluate the effectiveness of interventions, particularly for subjective health states such as well‐being. A parent carer is an adult primary caregiver for a child with a disability. Parent carers are at risk of poorer mental and physical health; targeted health promotion interventions are being developed, requiring evaluation. This study aimed to identify the important health and well‐being outcomes for parent carers for evaluating parent carer‐focused interventions. Methods: We recruited parents of children with special educational needs and disabilities living in England. Participants took part in individual, semi‐structured interviews via video in two parts. First, participants were asked open‐ended questions about health and well‐being; second, there was an elicitation exercise, in which the interviewees were asked to consider the aspects of health assessed by the Warwick‐Edinburgh Mental Wellbeing Scale (WEMWBS). Verbatim transcripts were analysed in two stages. Initially, data were analysed inductively, taking a thematic analysis approach. Subsequently, the data were analysed deductively with reference to a comprehensive framework of well‐being composed of 6 domains and 196 dimensions of well‐being. Results: Thirty parent carers participated. We found support for diverse dimensions across all six well‐being domains. Eighteen dimensions were perceived to be of greater importance for parent carers: ‘stress reaction’, ‘anxiety/depression’, ‘acceptance’, ‘autonomy’, ‘self‐esteem’, ‘cognition’, ‘achievement’, ‘interests/hobbies’, ‘learning’, ‘need for relatedness’, ‘rest’, ‘sleep’, ‘physical exercise’, ‘life purpose and satisfaction’, ‘community wellbeing’, ‘status’, ‘financial situation’ and ‘future security’. WEMWBS items focus on positive aspects of mental health. Not measuring reduction in ‘negative’ well‐being dimensions risks missing important changes. Conclusions: All six domains of health and well‐being were relevant to parent carers. However, some dimensions were more significant for the well‐being of parent carers, and these dimensions should be captured when evaluating their health and well‐being outcomes. Patient or Public Contribution: Parent carers were involved in all aspects of the research, including research aims, recruitment and sampling, data collection and analysis, and dissemination.

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer‐focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important.Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically.Results: Thirty parent carers were interviewed, 19 of whom had experienced a health‐promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: ‘self, identity and beliefs’; ‘social connections and support’ and ‘health‐promoting practices and outcomes.’ Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. ‘Self‐identity’ challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to ‘social connections’ reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of ‘health‐promoting activities’ because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health‐promoting activities of various kinds.Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self‐determination theory.Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co‐ordinator (A. McD.) who is herself a parent carer. A study‐specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co‐authored by the team's Family Involvement Co‐ordinator (A. McD.).

Background: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer‐led group‐based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID‐19.Methods: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context.Results: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co‐created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll‐out of the programme with other delivery partner organisations.Conclusions: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes.Patient and Public Contribution: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research.

Background: Stroke is a common cause of adult disability. Expert opinion is that about 20% of patients should receive thrombolysis to break up a clot causing the stroke. Currently, 11–12% of patients in England and Wales receive this treatment, ranging between 2% and 24% between hospitals.Objectives: We sought to enhance the national stroke audit by providing further analysis of the key sources of inter-hospital variation to determine how a target of 20% of stroke patients receiving thrombolysis may be reached.Design: We modelled three aspects of the thrombolysis pathway, using machine learning and clinical pathway simulation. In addition, the project had a qualitative research arm, with the objective of understanding clinicians’ attitudes to use of modelling and machine learning applied to the national stroke audit.Participants and data source: Anonymised data were collected for 246,676 emergency stroke admissions to acute stroke teams in England and Wales between 2016 and 2018, obtained from the Sentinel Stroke National Audit Programme.Results: Use of thrombolysis could be predicted with 85% accuracy for those patients with a chance of receiving thrombolysis (i.e. those arriving within 4 hours of stroke onset). Machine learning models allowed prediction of likely treatment choice for each patient at all hospitals. A clinical pathway simulation predicted hospital thrombolysis use with an average absolute error of 0.5 percentage points. We found that about half of the inter-hospital variation in thrombolysis use came from differences in local patient populations, and half from in-hospital processes and decision-making. Three changes were applied to all hospitals in the model: (1) arrival to treatment in 30 minutes, (2) proportion of patients with determined stroke onset times set to at least the national upper quartile and (3) thrombolysis decisions made based on majority vote of a benchmark set of 30 hospitals. Any single change alone was predicted to increase national thrombolysis use from 11.6% to between 12.3% and 14.5% (with clinical decision-making having the most effect). Combined, these changes would be expected to increase thrombolysis to 18.3% (and to double the clinical benefit of thrombolysis, as speed increases also improve clinical benefit independently of the proportion of patients receiving thrombolysis); however, there would still be significant variation between hospitals depending on local patient population. For each hospital, the effect of each change could be predicted alone or in combination. Qualitative research with 19 clinicians showed that engagement with, and trust in, the model was greatest in physicians from units with higher thrombolysis rates. Physicians also wanted to see a machine learning model predicting outcome with probability of adverse effect of thrombolysis to counter a fear that driving thrombolysis use up may cause more harm than good.Limitations: Models may be built using data available in the Sentinel Stroke National Audit Programme only. Not all factors affecting use of thrombolysis are contained in Sentinel Stroke National Audit Programme data and the model, therefore, provides information on patterns of thrombolysis use in hospitals, but is not suitable for, or intended as, a decision aid to thrombolysis.Conclusions: Machine learning and clinical pathway simulation may be applied at scale to national audit data, allowing extended use and analysis of audit data. Stroke thrombolysis rates of at least 18% look achievable in England and Wales, but each hospital should have its own target.Future work: Future studies should extend machine learning modelling to predict the patient-level outcome and probability of adverse effects of thrombolysis, and apply co-production techniques, with clinicians and other stakeholders, to communicate model outputs.Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full inHealth and Social Care Delivery Research; Vol. 10, No. 31. See the NIHR Journals Library website for further project information.

Background: Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective.Objective: The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability.Design: A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability.Results: Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child.Limitations: Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias.Conclusions: Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions.Future work: There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment.Study registration: This study is registered as PROSPERO CRD42018100572.Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.