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Development of a 4Pi national involvement standards-based questionnaire to evaluate patient and public involvement
No full textBackgroundEvaluation of patient and public involvement (PPI) is crucial to ensuring it is conducted with quality. However, determining how best to evaluate the experience of those doing involvement activities remains challenging, particularly given the complex landscape of diverse terminology and wide range of methods. There is a need for robust and accessible tools, grounded in established standards, that reflect the perspectives of patients and public contributors involved in PPI activities. To address this, we developed a questionnaire (4Pi Questionnaire) based on the 4Pi National Involvement Standards, a project that developed a framework around good practice and measurement, monitoring and evaluation of involvement activities.MethodsThe questionnaire was developed through an iterative process involving literature review, experts’ input and extensive consultation with PPI contributors. Initial items were generated deductively from the five domains of the 4Pi National Involvement Standards framework (i.e., Principle, Purpose, Presence, Process and Impact). Subsequent versions of the questionnaire were refined using a face validity workshop, a Questionnaire Appraisal System, and focus group-based cognitive interviewing (CI) with PPI contributors. Feedback focussed on clarity, relevance, accessibility and questionnaire structure. There was a final round of testing to assess accessibility and usability.ResultsThe 4Pi Questionnaire is a structured measure designed to capture experiences of involvement in diverse contexts across healthcare and research. The questionnaire consists of an introduction followed by 31 items grouped into two sections A and B. Section A (“Your experience of involvement”) includes 22 items relating to a single recent involvement activity and cover the five domains of the 4Pi National Involvement Standards framework. Respondents rate their agreement with 19 statements using a five-point Likert scale, and answer two open-ended questions. Section B (“About you”) collects demographic information. Completion time is approximately 15–30 min. Involvement of subject-matter experts and PPI contributors ensured clarity of language, relevance of each question, and usability of the questionnaire.ConclusionsGrounded in the 4Pi National Involvement Standards, the 4Pi Questionnaire provides an accessible and acceptable tool to measure the experiences and perceptions of patients and public contributors doing involvement activities. Systematically developed with and for people with lived experience, the 4Pi Questionnaire addresses a gap in the availability of standardised, meaningful measures and supports efforts to embed inclusive involvement practices across healthcare and research settings
Distinct clinical clusters of paediatric patients with status epilepticus:Retrospective cohort study
No full textAimTo characterize the clinical features, management, and outcomes of paediatric patients with status epilepticus, and to explore whether distinct clinical subgroups can be identified from clinical descriptions. MethodThis was an exploratory retrospective single-centre cohort study of paediatric status epilepticus admissions to Switzerland's largest tertiary-level paediatric hospital. We analysed 642 status epilepticus admissions from 467 patients (230 females; median age at first 4 years 11 months [interquartile range 1 year 5 months–7 years 5 months]). We applied descriptive statistics and machine-learning approaches. A k-means clustering algorithm was used to identify distinct clinical subgroups, while least absolute shrinkage and selection operator regression tested whether clinical metrics could predict mortality.ResultsAge-related differences in status epilepticus aetiology were observed: infants and younger children more often presented with acute symptomatic causes, whereas older children and adolescents were more likely to have pre-existing epilepsy. Out-of-hospital treatment was associated with faster treatment initiation and better treatment response. Shorter status epilepticus onset to treatment latency correlated with higher response rates and reduced need for intensive care. Cluster analysis identified three clinical subgroups: (1) younger patients with acute status epilepticus associated with an infection, including febrile status epilepticus (‘febrile seizure’ cluster); (2) younger patients with acute status epilepticus and a more severe in-hospital course (‘para-infectious’ cluster); and (3) older patients with an established epilepsy diagnosis (‘known epilepsy’ cluster). Across the cohort, progressive epilepsy aetiology and a previous diagnosis of epilepsy were associated with increased mortality risk.InterpretationPaediatric status epilepticus comprises clinically distinct subgroups that are identifiable from routine clinical data. Such data-driven clinical clustering may help refine risk stratification and inform clinical decision making in paediatric status epilepticus.</p
The effectiveness of specialist cognitive behavioural therapy for functional neurological disorder:A service evaluation
No full textIntroduction: Functional neurological disorder (FND) is a common and disabling condition associated with high levels of functional impairment and psychological distress. Psychological therapies such as cognitive behavioural therapy (CBT) are increasingly recommended as part of multidisciplinary care, but evidence from real-world clinical settings remains limited. Methods: This retrospective observational cohort study evaluated outcomes from a specialist CBT programme for adults with FND using routinely collected clinical data. Self-report measures of depression, anxiety, psychological distress, functional impairment, physical functioning, pain, and six cognitive-behavioural responses were collected before, during, and at the end of treatment. Linear mixed-effects models were used to examine change over time, with correction for multiple testing.Results: Data from 234 patients were analysed (70.5% female; mean age 40.9 years). Despite low completion of measures at follow up, significant improvements were observed in psychological distress, functional impairment, and five of the six cognitive-behavioural response domains across treatment, whereas no significant change was seen in physical functioning or pain measures. Sensitivity analyses excluding patients who received three or fewer sessions produced a consistent pattern of results. Conclusions: These findings suggest that specialist CBT for FND delivered in routine clinical practice is associated with meaningful improvements in distress, functioning, and key cognitive-behavioural maintenance processes, supporting its role within multidisciplinary care
Cyclic response of ultra-lightweight pentamode metamaterials
No full textUltra-lightweight pentamode metamaterials (PMMs) with tailored architectures were fabricated via high-resolution digital light processing (DLP) using PlasGray photoresin, achieving a minimum relative density of 1.1% (absolute density ≈ 13 kg m−3). A customized scaffolding strategy was developed to preserve geometric fidelity and mitigate print-induced defects in the slender double-cone elements. The mechanical response of PMMs with varying relative densities was evaluated under quasi-static compression, with structures at 3% relative density exhibiting the highest mass-specific stiffness and strength. To assess durability and rate-dependent behavior, strain-controlled cyclic compression–release tests were performed across multiple strain amplitudes and strain rates. The PMMs exhibited pronounced strain-rate sensitivity: at a 10% strain amplitude, increasing the strain rate by two orders of magnitude raised peak stress by 168%, enhanced energy dissipation by 113%, and reduced residual strain by 35%. These results highlight the pivotal role of lattice topology in dictating cyclic softening, energy dissipation, and fatigue response, positioning PMMs as promising candidates for lightweight energy-absorbing and vibration-mitigation applications
Type 1 diabetes, ageing and frailty:an underexplored intersection
No full textOver recent decades, the life expectancy of individuals with type 1 diabetes has steadily improved due to advances in therapies that enhance metabolic control alongside better prevention and management of complications. However, this extended survival brings new challenges. Type 1 diabetes, through sustained hyperglycaemia and recurrent hypoglycaemia, may act as an accelerator of ageing, predisposing individuals to the development of geriatric syndromes such as frailty. Frailty, defined as a state of reduced physiological reserve that heightens susceptibility to stressors and impairs the ability to restore homeostasis after acute events, has emerged as a recognised complication of diabetes and has been associated with several adverse outcomes including increased risks of hypoglycaemia, hospitalisation, disability, institutionalisation and death. The putative pathophysiology of frailty in type 1 diabetes is complex and multifactorial. It reflects the direct effects of chronic exposure to hyperglycaemia and consequent micro- and macrovascular complications, superimposed on age- and diabetes-related hormonal changes. Additional contributors include sarcopenia, cognitive decline and other comorbidities. Currently, most of the literature on diabetes and frailty focuses on type 2 diabetes, while the relationship with type 1 diabetes and the impact on outcomes remain to be fully elucidated. In this review we discuss the growing evidence on the link between frailty and type 1 diabetes, explore its underlying pathophysiological mechanisms, discuss assessment and treatment strategies, and highlight the key knowledge gaps and suggest future research directions in this evolving field.</p
Modelling lowering of elevated blood pressure in pregnancy to reduce pre-eclampsia
No full textObjective: To determine whether antihypertensive treatment of blood pressure below 140/90mmHg may reduce the incidence of pre-eclampsia. Design: Modelling study of blood pressure lowering from early pregnancy, on the impact of pre-eclampsia, as a secondary analysis of data from prospective non-intervention cohort studies.Setting: Seven secondary care institutions in England.Participants: 54,422 pregnancies who underwent screening at 11-13 weeks’ gestation for pre-eclampsia, with blood pressure values available, and who gave birth to a liveborn or stillborn infant at ≥24 weeks’ gestation. Excluded were pregnancies with aneuploidy, major fetal abnormality, and those ending in miscarriage or termination before 24 weeks’ gestation.Interventions: The Fetal Medicine Foundation competing-risks model was used to calculate the expected pre-eclampsia risk, based on maternal characteristics, mean arterial pressure, uterine artery pulsatility index, and placental growth factor. Expected pre-eclampsia risks were used to calculate expected PE incidence. To model the effect of lowering diastolic blood pressure from over 85, 80, or 75mmHg throughout pregnancy, diastolic blood pressure was fixed at these values, systolic blood pressure modelled, mean arterial pressure and pre-eclampsia risk recalculated, and expected pre-eclampsia incidence re-estimated. Results were expressed as relative risk reduction (RRR).Main outcome measures: Pre-eclampsia incidence (overall, and at preterm or term gestational ages), according to modelled blood pressure lowering.Results: The study population was ethnically diverse (17.3% Black, 7.8% South/East Asian, and 2.6% with >1 self-identified ethnicity). Reducing diastolic blood pressure >85mmHg to 85mmHg, 4.8% of women would receive antihypertensives, with a potential RRR of 21.4% (absolute reduction of 2.9%) in any pre-eclampsia and 28.32% (absolute reduction of 1.4%) in preterm pre-eclampsia. Reducing diastolic blood pressure >80mmHg to 80mmHg, 13.2% would receive antihypertensives, with a potential RRR of 26.0% (absolute reduction of 2.3%) in any pre-eclampsia and 33.8% (absolute reduction of 1.0%) in preterm pre-eclampsia. Reducing diastolic blood pressure >75mmHg to 75mmHg, 29.5% would receive antihypertensives, with a potential RRR of 32.8% (absolute reduction of 2.1%) in any pre-eclampsia and 41.6% (absolute reduction of 0.8%) in preterm pre-eclampsia.Conclusions: Lowering blood pressure from early pregnancy may reduce preterm and term pre- eclampsia. This requires evaluation in a definitive, randomised trial
Autism and Dementia:a co-produced community resource
No full textA co-produced community resource, in partnership with DementiaUK, Autistica, and members of the autism and dementia community.Autism and dementia are different conditions, but some people have both together. We explain the similarities in autism and dementia, key differences, changes to look out for and how to find support
Attention-Deficit/Hyperactivity Disorder Traits in Childhood and Physical Health in Midlife
No full textImportance: Although attention-deficit/hyperactivity disorder (ADHD) has been associated with various health risks, most research has focused on children and young adults, leaving long-term physical health outcomes of ADHD traits underexplored. Objective: To investigate the association between childhood ADHD traits and physical health outcomes in midlife and the role health risk factors play in this association. Design, Setting, and Participants: This cohort study included data from the nationally representative, population-based 1970 British Cohort Study. The cohort included people born in England, Scotland, and Wales during the same week in 1970, with follow-up data collected over 46 years. Participants were excluded from the analysis if missing data on 1 or more key variables (sex, ADHD traits, social class, and ethnicity) assessed. The data analysis was performed between February and July 2025. Exposure: Attention-deficit/hyperactivity disorder traits at age 10 years as assessed using a validated measure derived from childhood behavior questionnaires. Main Outcomes and Measures: Outcomes were self-reported health conditions, multimorbidity (2 or more co-occurring physical health conditions), and physical health-related disability by age 46 years. Cox proportional hazards models were used to test whether ADHD traits at age 10 years were associated with hazards of multimorbidity up to age 46 years. Health risk factors, including smoking, alcohol use, psychological distress, higher body mass index, and lower educational attainment from age 26 to 46 years, were examined using path models. Results: A total of 10 930 participants were included in the main analyses (all aged 46 years; 51.0% women). Higher childhood ADHD traits were associated with more physical health conditions (b = 0.10; 95% CI, 0.07-0.13), increased odds of physical multimorbidity (odds ratio, 1.14, 95% CI, 1.08-1.19), and greater physical health-related disability (b = 3.17; 95% CI, 2.27-4.07) by age 46 years. There were no sex interactions for physical health conditions and multimorbidity. However, the association between ADHD traits and physical health-related disability showed a larger effect size in women (b = 4.07; 95% CI, 2.67-5.48) than in men (b = 2.37; 95% CI, 1.24-3.51). Participants who had a high likelihood of meeting ADHD criteria in childhood (5.5%) had an estimated probability of 42.1% (95% CI, 38.2%-46.1%) of physical multimorbidity by age 46 years compared with 37.5% (95% CI, 36.6%-38.4%) for those without high ADHD traits. Indirect associations were observed through smoking, psychological distress, and body mass index. Conclusions and Relevance: This cohort study found that high ADHD traits in childhood were associated with poorer physical health outcomes in midlife, with health risk factors explaining part of this association. Addressing modifiable risk factors may help mitigate long-term health disparities in people with ADHD. Intervention is needed across the life course to support the health and well-being of people with ADHD.</p
Non-state legitimation as practice:the multiplicit making of public authority in Afro-Chinese engagements
No full textAfrican states, under market liberalization, have witnessed resurgent non-state intervention, with non-state actors (NSAs) enmeshed in collective good provision or roles associated with the state. To do so, NSAs must legitimate private forms of authority in the name of the public. Legitimation, we argue, is a core problem of socio-political life but remains only partially represented, hamstrung by Eurocentric, often state-based rationalities. This article sets out a post-Weberian framework for understanding how NGOs and companies legitimate their authority to act, focussing on African contexts. We bring analyses of these organizations into dialogue through our presentation of ‘the non/state’, attending to three conceptual axes: organizational type; source modalities; and contact zone. To illustrate the purchase of this approach, we explore a conspicuous ‘front’ in Africa’s international relations: Chinese organizations going global. Beyond notions of a singular, state-directed approach, we contribute to a pluralist understanding of ‘global China’, shaped by local contexts