Objectives To describe trends in demographic and clinical characteristics of children with a life-limiting condition (LLC) who died in Wales.Methods Linked full population cohort observational study of all children and young people (CYP) aged 0-25 years old with an LLC, resident in Wales from 2003 to 2020. Deaths were identified using four data sources: death registries, congenital anomaly, inpatient and day case activity, and accident/emergency attendances.Results Of the 6828 recorded deaths, 39% (N=2633) had an LLC-related diagnosis. The proportion of LLC deaths increased from 36% to 42% from 2003 to 2008 to 2015to 2020, with 43% (1135/2633) of LLC-related deaths occurring among children aged up to a year old. Among 5-11 years old, 68% (276/406) had an LLC diagnosis on their death certificate. Of all deaths with an LLC-related diagnosis, 28% (738/2633) occurred in the most deprived quintile areas. Neurological conditions were the most common LLC diagnostic group (22%, 570/2633). Among those with an LLC, 63% (1654/2633) had the condition reported as cause of death (Underlying: 39% (1017/2633); Related: 24% (637/2633)).Conclusions The proportion of LLC-related deaths in Wales increased 6% from 2003 to 2020. LLC-related deaths accounted for nearly 40% of total deaths in CYP up to 25 years. One-third of these deaths did not mention a life-limiting diagnosis on the death certificate. Seventy per cent of deaths among the 5-11 age group had a life-limiting diagnosis present.

Evidence confirms that provision of end-of-life care for infants, children and young people varies across the United Kingdom, however it is not clear how this variation impacts children and their families. This study aimed to assess parental outcomes and experiences of their infant, child or young person receiving end-of-life care in the United Kingdom through a cross-sectional mixed-methods survey. Bereaved parents were sent a survey, after their infant or child had died and had received end-of-life care in a neonatal or paediatric intensive care unit. The survey yielded qualitative and quantitative data, which were analysed using qualitative content analysis and graphical summaries of quantitative results. Data were integrated using joint display matrices. One hundred sixty nine bereaved parents completed the survey, of which 60

BACKGROUND:Annually, approximately 500 children and young people (aged <25 years) with cancer die in England. Little is known about the intensity of their end-of-life care. AIM:The primary aim of this study was to establish the prevalence of high-intensity treatment at the end of life in England and assess the relationship between high-intensity treatment and palliative care integration in main cancer treatment centres. The secondary aim was to assess the relationship between palliative care integration and place of death. DESIGN:Retrospective, national full-population cohort study. SETTING/PARTICIPANTS:English Cancer Registry data with linked hospitalisation, treatment and intensive care data were used to define a cohort aged <25 years who died in 2012-2020 and post-cancer diagnosis. High-intensity treatment was defined as any intravenous chemotherapy within 14 days of death or multiple hospitalisations, emergency department visits or any intensive care unit admission within 30 days of death. High-intensity treatment prevalence at the end of life and place of death were summarised by demographics, cancer type, main treatment centre and centre-level integration of palliative care. Logistic regression models explored associations with high-intensity treatment. RESULTS:2208 (52%) of the cohort (n=4247) had high-intensity treatments at the end of life and 1911 (45%) died in hospital. High-intensity treatment prevalence varied by age at death and cancer type. There was no evidence of health inequalities in treatments, but minority ethnic groups and those living in more deprived areas had greater odds of dying in hospital. CONCLUSIONS:High-intensity treatment is common at the end of life among children and young people with cancer; however, its appropriateness is difficult to evaluate. Nevertheless, no evidence of health inequalities was noted, and hospital deaths remain most common.

Primary teachers need lesson-feasible ways to interpret bilateral handgrip so feedback, grouping, and task design in primary physical education (PE) can be adjusted fairly within lessons. This study presents and validates a teacher-facing interpretation routine for Year 5-6 pupils (9-11 years) using two trials per hand (best of two) and a writing-hand-coded asymmetry percentage. Data from 18 schools (n = 568; 10.3 +/- 0.7 years) showed good within-session reliability, with more stable classification when best-of-two scores were used compared with a single trial. Writing-hand preference matched the stronger hand in only 54.8% of cases, cautioning against assuming the writing hand is stronger. Mean signed asymmetry was small (1.36%), indicating minimal group-level advantage. Using absolute asymmetry, 38.4% exceeded 10% and 7.5% exceeded 20%, supporting pragmatic decision bands (<= 10%, >10-20%, >20%) linked to proportionate classroom actions. The routine is presented as assessment for learning rather than ranking or diagnosis to support inclusive, fair decision-making in primary PE.

BACKGROUND:Despite recent improvements, there is still stark inequity in the funding and provision of 24/7 end-of-life care for children, resulting in many families not receiving the support they need. To inform, plan and implement service changes it is important to take account of what works in current contexts and existing models of care, and to learn how professionals 'on the ground' are currently experiencing 24/7 care delivery. METHODS:The study aimed to explore professionals' perspectives of delivering 24/7 paediatric palliative care and their expectations and needs of a new service. This qualitative study used focus groups, and a thematic framework approach to analyse the data. Participants were healthcare professionals (HCPs) involved in the delivery of care to children (0-18 years) with palliative care needs and their families. RESULTS:Fifty-three healthcare professionals, (25 doctors, 19 nurses, 6 managerial/administration and 3 allied professionals), took part in 11 focus groups. Three themes with sub-themes were developed: (1) Working within a fragmented landscape (Responding to the need for 24/7 end-of-life care, Coordination across teams without infrastructure, Building 24/7 continuity through integration); (2) Constraints on choice: default not preferred choice? (Limits to family choice, Critical yet inconsistent provision of community nursing, Inequality of access to specialist support); and (3) The personal cost of making it work (Gaps in confidence and experience, The price of goodwill). Professionals navigated a disjointed system to deliver 24/7 care to families. They strived to offer care in families' preferred place; however, choice was constrained by the availability of local services. Professionals stretched themselves to provide around the clock care, often sacrificing their personal wellbeing and in doing so, inadvertently sustaining a broken system. CONCLUSION:Stepping up to support families with 24/7 end-of-life care for their child, has resulted in an unsustainable physical and emotional toll on professionals. The impact of delivering care in an inequitable system is causing significant moral distress, and there is a growing realisation that their goodwill is masking current systemic shortcomings. Integrated Care Boards must work jointly to find economies of scale to establish equitable and sustainable models of delivery that meet national standards and to ensure all children have access to high quality 24/7 end-of-life care.

This study investigated enjoyment levels in physical education (PE) among adolescent students in their first year of secondary school in Wales (UK), examining associations with attitudes toward PE, physical self-perceptions, enjoyment of physical activity (PA), and PA behaviours. Participants were 192 Year 7 pupils (102 boys, 90 girls; M age = 12.31 years) from three secondary schools in South-East Wales. Students completed validated questionnaires assessing PE enjoyment (FIPE), PA enjoyment (PACES), PA behaviour (PAQ-A), physical self-perceptions (CY-PSPP), and attitudes toward PE (PEAAS). A one-way MANOVA revealed significant gender differences across measures, Wilks’ Λ = .86, F(10, 181) = 2.93, p = .002, with a large effect size (η2 = .14). Boys scored higher on sports competence and PE attitudes. Correlational analyses showed moderate associations between PE enjoyment and PA enjoyment, behaviour, and self-perceptions, with distinct gender patterns. Regression analyses identified key predictors of PE enjoyment, accounting for 21% of the variance in boys and 33% in girls, highlighting the role of activity enjoyment, self-worth, and perceived competence. These findings highlight opportunities to enhance PE strategies within the revised Welsh curriculum, promoting greater enjoyment, health, and PA participation among early adolescents.

BackgroundPrevious studies have shown associations between specific limiting longstanding illnesses and mental health difficulties using cross-sectional studies in the UK. This study explored the association between having any limiting longstanding illness and serious psychological distress or of currently receiving treatment for depression or serious anxiety at age 17 years.MethodsA secondary analysis of the UK Millennium Cohort Study was conducted. Outcome measures were dichotomised responses from the self-administered Kessler-6 questionnaire for nonspecific psychological distress, and self-reported current treatment for depression or serious anxiety. Limiting longstanding illness data and covariates were taken from questionnaires with parents and adolescents, from birth up to age 17 years. Data were analysed using multiple binary logistic regression, first using complete-case analysis, and then using multiple imputation using chained equations.ResultsAdolescents with a history of limiting longstanding illness were at an increased odds of both serious psychological distress (odds ratio = 1.53, 95%CI = 1.27-1.86) and self-reporting currently receiving treatment for depression or serious anxiety at age 17 years (odds ratio = 3.02, 95%CI 2.24-4.07).ConclusionChildren and young people with a limiting longstanding illness are at increased risk of having serious psychological distress, depression, and serious anxiety. Practitioners should be aware of this and routine screening for psychological distress, plus additional preventative support, may be beneficial.

OBJECTIVE:To examine trends in diagnosis of gender dysphoria and related conditions in children and young people attending primary care practices in England. DESIGN:Longitudinal analysis of electronic primary care records from the Clinical Practice Research Datalink (CPRD) Aurum database linked to hospital and Index of Multiple Deprivation data. SETTING:Primary care practices in England between 2011 and 2021. PARTICIPANTS:3782 patients aged 0-18 years with a recorded history of gender dysphoria/incongruence and matched comparators with autism spectrum conditions or eating disorder. MAIN OUTCOME MEASURES:Incidence rates and prevalence of gender dysphoria/incongruence; prescribing rates for medical treatments; co-occurrence of anxiety, depression and self-harm. RESULTS:Between 2011 and 2021, incidence rates of recorded gender dysphoria/incongruence increased from 0.14 (95% CI 0.08 to 0.20) to 4.4 (95% CI 4.1 to 4.7) per 10 000 person years, and from 2014 the rate increased more rapidly in recorded females than males. There was no significant association between gender dysphoria/incongruence and area level deprivation. Of the 3782 children and young people with a record of gender dysphoria/incongruence, 176 (4.7%) were prescribed puberty suppressing hormones; 302 (8.0%) were prescribed masculinising/feminising hormones; and 1994 (52.7%) had a record of anxiety, depression or self-harm. Compared with matched comparators, those experiencing gender dysphoria/incongruence had similar recorded rates of anxiety and higher rates of depression and self-harm. CONCLUSIONS:Recorded prevalence of gender dysphoria/incongruence increased substantially in children and young people between 2011 and 2021, particularly in recorded females. Levels of anxiety, depression and self-harm were high, indicating an urgent need for better prevention and treatment of mental health difficulties in these patients.

Providing high quality around-the-clock care, is key to supporting families in their preferred place of care. Changing symptoms and parents’ distress cannot wait for ‘opening hours’. Yet in the UK, 24/7 children’s end-of-life care remains a significant postcode lottery. To inform equitable service development this study explored parents’ experiences accessing 24/7 paediatric palliative care, their expectations and needs. Qualitative study using in-depth interviews, analysed using thematic analysis. Parents in one region of England, were eligible if their child had a life-limiting condition and end-of-life care was planned, or if they were bereaved parents whose child had died within the previous 3–36 months. Twenty-six parents were interviewed, 13 currently caring for their child and 13 bereaved parents. Two themes were developed: “Scaffolded for uncertainty and crisis” and “Falling through the service gaps”. Most parents want seamless 24/7 end-of-life care for their child at home and to avoid hospital admissions. Despite being desperate to be home and feeling unsafe in hospital, service gaps mean, for some families, there is no option other than their child dying as an inpatient. The study found marked inequity in parent’s experiences. Parents are confident when supported by a trusted 24/7 team with experience delivering palliative care, that provides phone support, face-to-face nursing and access to specialist advice. Hospital staff need improved training and consistent support from specialist palliative care teams. Further research with professionals is needed to understand the local and regional barriers that are preventing this support being available to all families.

Transition of young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes, but few population-level studies examine trends in subgroups. We aimed to assess sociodemographic inequalities in changes in unplanned secondary care utilisation occurring across transfer to adult care for people with CKD in England. A cohort was constructed from routine healthcare administrative data in England of young people with childhood-diagnosed CKD who transitioned to adult care. The primary outcome was the number of emergency inpatient admissions and accident and emergency department (A E) attendances per person year, compared before and after transfer. Injury-related and maternity admissions were excluded. Outcomes were compared via sociodemographic data using negative binomial regression with random effects. The cohort included 4505 individuals. Controlling for age, birth year, age at transfer, region and sociodemographic factors, transfer was associated with a significant decrease in emergency admissions (IRR 0.75, 95

BACKGROUND:National and international guidelines recommend that psychosocial support should be a key component of the care offered to children and adolescents experiencing gender dysphoria/incongruence. However, specific approaches or interventions are not recommended. AIM:To identify and summarise evidence on the outcomes of psychosocial support interventions for children and adolescents (age 0-18) experiencing gender dysphoria/incongruence. METHODS:Systematic review and narrative synthesis. Database searches (MEDLINE; EMBASE; CINAHL; PsycINFO; Web of Science) were performed in April 2022, with results assessed independently by two reviewers. Peer-reviewed articles reporting the results of studies measuring outcomes of psychosocial support interventions were included. Quality was assessed using the Mixed Methods Appraisal Tool. RESULTS:Ten studies were included. Half were conducted in the US, with others from Australia, Canada, New Zealand and the UK. Six were pre-post analyses or cohort studies, three were mixed methods, and one was a secondary analysis of intervention data from four trials. Most studies were of low quality. Most analyses of mental health and psychosocial outcomes showed either benefit or no change, with none indicating negative or adverse effects. CONCLUSIONS:The small number of low-quality studies limits conclusions about the effectiveness of psychosocial interventions for children/adolescents experiencing gender dysphoria/incongruence. Clarity on the intervention approach as well as the core outcomes would support the future aggregation of evidence. More robust methodology and reporting is required. PROSPERO REGISTRATION NUMBER:CRD42021289659.

Background Increasing numbers of children and adolescents experiencing gender dysphoria or incongruence are being referred to specialist gender services. Historically, social transitioning prior to assessment was rare but it is becoming more common.Aim To identify and synthesise studies assessing the outcomes of social transition for children and adolescents (under 18) experiencing gender dysphoria/incongruence.Methods A systematic review and narrative sythesis. Database searches (Medline, Embase, CINAHL, PsycINFO, Web of Science) were perfomed in April 2022. Studies reporting any outcome of social transition (full or partial) for children and adolescents experiencing gender dysphoria/incongruence were included. An adapted version of the Newcastle-Ottawa Scale for cohort studies was used to appraise study quality.Results Eleven studies were included (children (n=8) and adolescents (n=3)) and most were of low quality. The majority were from the US, featured community samples and cross-sectional analyses. Different comparator groups were used, and outcomes related to mental health and gender identity reported. Overall studies consistently reported no difference in mental health outcomes for children who socially transitioned across all comparators. Studies found mixed evidence for adolescents who socially transitioned.Conclusions It is difficult to assess the impact of social transition on children/adolescents due to the small volume and low quality of research in this area. Importantly, there are no prospective longitudinal studies with appropriate comparator groups assessing the impact of social transition on mental health or gender-related outcomes for children/adolescents. Professionals working in the area of gender identity and those seeking support should be aware of the absence of robust evidence of the benefits or harms of social transition for children and adolescents.PROSPERO registration number CRD42021289659.

Evidence from high-income countries suggests that greater media coverage of climate change is associated with greater public concern, while societal "shocks" reduce concern. Conducted in 2021, this UK study of adults (n = 6082) investigates climate change concern, its identification as among "the most important issues" and as "the single most important issue" facing the UK. It does so in the context of increased media coverage of climate change associated with the UK's hosting COP26 and the COVID19 pandemic with its associated restrictions on everyday life. In analyses that took account of sociodemographic factors, neither increased media coverage around COP26 nor the COVID19 pandemic had an effect on climate change concern or its identification as an important issue for the UK. Its identification as the single most important issue was at its lowest at the height of the COVID19 pandemic, with no evidence that increased climate change coverage affected its issue salience.

The primary aim of this study was to identify levels of fundamental movement skills (FMS) proficiency in primary school children. A secondary aim was to establish if these FMS proficiency levels differentiated between children born in different quartiles of the school year. The results demonstrated overall levels of FMS proficiency were low in both genders with significant differences in FMS proficiency established between genders on several of the skills. In addition, significant differences were shown with some FMS and quartiles of the school year in boys only. In summary, these findings suggest that there is a greater need for a clearer strategy or focus to promote and develop FMS proficiency within the primary school environment. It is also important, for PE teachers, and practitioners, to be aware of the effect of the RAE with FMS proficiency on development, assessment, and selection at this age.

The transition from childhood to adulthood is a time of great change, both emotionally and physically, for any young person, but particularly for those living with a long-term condition. In England, more than 80,000 young people aged under 18 years are living with a life-threatening or life-limiting condition​[1]​. In addition, 23% of those aged 11–15 […]

Objectives The transition of children and young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes,1 but there has been no recent assessment of these at a population level or how different sub-groups are impacted. This study aims to assess sociodemographic inequalities in the change in unplanned secondary care use before and after transfer to adult secondary care services for young people with CKD in England. Methods A cohort of individuals diagnosed with CKD as children who transitioned to adult care was constructed from routine healthcare administrative data in England (Hospital Episode Statistics2). Age at transition was estimated via the last paediatric appointment.3 The primary outcome was the number of emergency secondary care admissions and accident and emergency attendances per person per year, which was compared in the 4 years before and after transition. Comparison of the outcomes via sociodemographic data was assessed through negative binomial regression with random effects. Results There were 4,505 individuals in the cohort. Controlling for age, birth-year, age at transition, region and socio-demographic factors, transition was associated with a significant decrease in emergency secondary care admissions (IRR 0.75, 95% CI 0.64–0.88) and no change in A&E attendances (IRR 1.10, 95% CI 0.95–1.27). For both types of care there were significantly higher overall rates of emergency secondary care use in female sex, non-white ethnicities and higher index of multiple deprivation and evidence for effect modification between these factors and transition. Conclusions There were sociodemographic inequalities in emergency secondary care usage in this cohort across the transition period, independent of age, with some variation in trends between data on secondary care admissions and A&E use. Such inequalities are likely to be multifactorial in origin, and explanations could include differences in the types and severities of CKD among these groups, but importantly, could represent differential meeting of care needs. Further validated prospective studies are needed to evaluate trends in CKD populations and investigate drivers and solutions to such inequalities. References Watson AR, et al. Transition from pediatric to adult renal services: a consensus statement by the international society of nephrology (ISN) and the international pediatric nephrology association (IPNA). Kidney International 2011;80(7):704–707. Herbert A, et al. Data Resource Profile: Hospital Episode Statistics Admitted Patient Care (HES APC). International Journal of Epidemiology 2017;46(4):1093–1093i. Jarvis S, et al. Estimation of age of transition from paediatric to adult healthcare for young people with long term conditions using linked routinely collected healthcare data. International Journal of Population Data Science Journal 2021;6(1):1685.

The aims of this study were to determine the fundamental movement skill proficiency, functional movement competency and health-related physical fitness in a cohort of UK adolescents and to further examine if there were any relationships between these variables. In total, there were 178 participants aged between 11 and 13 years, 90 boys and 88 girls. Ordinal logistic regression analysis was used to investigate the relationship between FMS proficiency and functional movement competency and multi-factor ANOVA was used to explore the main effects of the FMS and the functional movements with health-related physical fitness responses. Overall, FMS proficiency and functional movement competency were classified as being low. In addition, positive relationships were found for several functional movements with specific FMS, and, for several functional movements and FMS with some measures of health-related physical fitness. In conclusion, further intervention of these variables is clearly warranted with this adolescent population in Wales (UK).

ObjectivesTo better understand the complexity and healthcare needs of children and young people in Wales with life-limiting or life threatening conditions to better plan and target healthcare services. Previous attempts to quantify complexity have required primary data collection; this is not feasible at scale, use of existing data is preferred. MethodsRoutinely collected healthcare and administrative data were linked: primary care data, hospital care data sets, cancer and congenital anomaly registries, paediatric intensive care audit data and death records. Children and young people with life-limiting conditions were identified using a previously developed diagnostic framework. Previous work on conceptualising medical complexity across eight domains was operationalised for the first time using the wide range of available data, with scores across five domains and a total complexity score. The relationship between the complexity score, healthcare use, stage of condition and category of condition was explored. ResultsChildren and young people with life-limiting conditions showed the full range of medical complexity scores, from zero to five, with distributions varying across age groups with increasing complexity at greater ages. Distributions also varied across categories of condition, with congenital and oncology conditions, although among the most prevalent, exhibiting lower medical complexity. Nonetheless, all conditions showed a range of complexities – there were no conditions for which all individuals were either high or low complexity. Complexity scores were correlated with stage of condition and healthcare use and may be used to identify groups likely to have higher healthcare demand or greater risk of clinical instability. While life-limiting conditions were more prevalent in areas of higher deprivation, there was no association between deprivation and medical complexity. ConclusionAssessment of medical complexity from routinely-collected data can be useful in better understanding a population and in targeting and planning care, without requiring additional data collection. This can help to design resilient services that prepare for changing needs and aid targeting of limited resources.

Background: The number of children with life-limiting conditions in England is known to be increasing, which has been attributed in part to increased survival times. Consequently, more of these young people will reach ages at which they start transitioning to adult healthcare (14-19 years). However, no research exists that quantifies the number of young people with life-limiting conditions in England reaching transition ages or their medical complexity, both essential data for good service planning. Methods: National hospital data in England (Hospital Episode Statistics) from NHS Digital were used to identify the number of young people aged 14-19 years from 2012/13 to 2018/19 with life-limiting conditions diagnosed in childhood. The data were assessed for indicators of medical complexity: number of conditions, number of main specialties of consultants involved, number of hospital admissions and Accident & Emergency Department visits, length of stay, bed days and technology dependence (gastrostomies, tracheostomies). Overlap between measures of complexity was assessed. Results: The number of young people with life-limiting conditions has increased rapidly over the study period, from 20363 in 2012/13 to 34307 in 2018/19. There was evidence for increased complexity regarding the number of conditions and number of distinct main specialties of consultants involved in care, but limited evidence of increases in average healthcare use per person or increased technology dependence. The increasing size of the group meant that healthcare use increased overall. There was limited overlap between measures of medical complexity. Conclusions: The number of young people with life-limiting conditions reaching ages at which transition to adult healthcare should take place is increasing rapidly. Healthcare providers will need to allocate resources to deal with increasing healthcare demands and greater complexity. The transition to adult healthcare must be managed well to limit impacts on healthcare resource use and improve experiences for young people and their families.

Objectives To estimate point of transition from paediatric to adult healthcare from routinely collected healthcare records and to use this to compare emergency care use pre- and post transition for young people with life-limiting conditions. Approach Routinely collected healthcare records were obtained from the Clinical Practice Research Datalink. These included linked primary care and hospital (inpatient, outpatient and A&E) records and death and deprivation data. The data were used to identify young people (12-23 years)with life-limiting conditions, diabetes and no long term conditions. Methods were developed to estimate point of transition from paediatric to adult care by classifying treatment specialties recorded in inpatient and outpatient care as paediatric or adult. These were compared and a favoured method selected. Emergency hospital care use was then compared, pre- and post-transition to adult care for the three groups. Results The last inpatient or outpatient record classified as paediatric care was chosen as the transition point. Simulation showed that this had the potential for far greater sensitivity to changes at transition (~20% difference in detected effect size) than using a simple age cut-off. Application of the method to the data showed significant increases in emergency inpatient admissions (by 29%, 95% confidence interval 14-46%) and A&E visits (by 24%, 95% confidence interval 12-38%) post- compared to pre-transition in the life-limiting conditions group, but no increases for the diabetes or no long term conditions groups, suggesting that transition has little effect for these groups. Conclusion Linked, routinely collected healthcare records, combined with estimating transition point from the data, provide a more sensitive method for detecting changes at transition with reduced risk of misclassification bias. There is an increase in emergency care after transition, with negative effects on young people, families and cost implications for providers.