Inequalities in emergency care use across transition from paediatric to adult care: a retrospective cohort study of young people with chronic kidney disease in England.

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% CI 0.64-0.88) and no significant change in A&E attendances (IRR 1.10, 95% CI 0.95-1.27). Female sex was associated with static admissions and increased A&E attendances with transfer, with higher admissions and A&E attendances compared to males pre-transfer. Non-white ethnicities and higher deprivation were associated with higher unplanned secondary care use. CONCLUSION:  Sociodemographic inequalities in emergency secondary care usage were evident in this cohort across the transition period, independent of age, with some variation between admissions and A&E use, and evidence of effect modification by transfer. Such inequalities likely have multifactorial origin, but importantly, could represent differential meetings of care needs. WHAT IS KNOWN: • In chronic kidney disease (CKD), transfer from paediatric to adult healthcare is associated with declining health outcomes. • Known differences in CKD outcomes by sociodemographic factors have limited prior exploration in the context of transfer. WHAT IS NEW: • Population-level data was used to examine the impacts of transfer and sociodemographic factors on unplanned secondary care utilisation in CKD. • Healthcare utilisation trends may not reflect known CKD pathophysiology and there may be unexplored sociodemographic inequalities in the experiences of young people across transfer.

Psychosocial support interventions for children and adolescents experiencing gender dysphoria or incongruence: a systematic review.

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.

Impact of social transition in relation to gender for children and adolescents: a systematic review.

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.

Polypharmacy in Children and Young People With Life-limiting Conditions From 2000 to 2015: A Repeated Cross-sectional Study in England.

CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalizations and inappropriate prescribing, and can affect the quality of life of children and their families as they manage complex medication schedules. Despite this, little is known about polypharmacy in this population. OBJECTIVE: To describe the prevalence and patterns of polypharmacy in children with a life-limiting condition in a nationally representative cohort in England. METHODS: Observational study of children (age 0-19 years) with a life-limiting condition in a national database from 2000 to 2015. Common definitions of polypharmacy were used to determine polypharmacy prevalence in each year based on unique medications and regular medications. Hierarchical regression analyses were used to explore factors associated with polypharmacy. RESULTS: Data on 15,829 individuals were included. Each year 27%-39% of children were prescribed ≥5 unique medications and 8%-12% were prescribed ≥10. Children with a respiratory (OR 7.6, 95%CI 6.4-9.0), neurological (OR 2.8, 95%CI 2.4-3.2), or metabolic (OR 2.2, 95%CI 1.7-2.8) condition were more likely than those with a congenital condition to experience polypharmacy. Increasing age, being diagnosed with a LLC under one year of age, having >1 life-limiting or chronic condition or living in areas of higher deprivation were also associated with higher prevalence of polypharmacy. CONCLUSION: Children with life-limiting conditions have a high prevalence of polypharmacy and some children are at greater risk than others. More research is needed to understand and address the factors that lead to problematic polypharmacy in this population.

The weight status of children in late childhood within south East Wales and predictions for their future health.

BACKGROUND: Current child measurements of weight status in Wales are determined at early childhood only. A further measurement at late childhood could identify adiposity levels prior to adolescence and young adulthood. The aim of this study therefore was to determine current adiposity levels in a cohort of children at late childhood and present a prediction of future levels upon entering young adulthood. METHODS: In total, 288 boys (M age = 10.94 years, SD = 0.58) and 257 girls (M age = 10.78 years, SD = 0.63) from South East Wales were measured for anthropometry and their body mass index (BMI) (kg/m2) determined. International Obesity Task Force data predicted their BMI at age 18 years. RESULTS: Approximately one quarter of boys and girls in late childhood were classified at an unhealthy weight. Predictive data showed that by age 18 years, this percentage had increased to approximately one-third in both genders. CONCLUSION: The overweight and obesity levels in our cohort were high and predicted that many could become obese adults. This study therefore supports the call for the current Wales child measurement programme to be extended to report weight status in late childhood.

Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions.

BACKGROUND: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increases in emergency hospital visits. METHODS: A retrospective cohort was constructed from routinely collected primary and hospital care records for young people aged 12-23 years in England with (i) life-limiting conditions, (ii) diabetes or (iii) no long-term conditions. Transition point was estimated from the data and emergency inpatient admissions and Emergency Department visits per person-year compared for paediatric and adult care using random intercept Poisson regressions. RESULTS: Young people with life-limiting conditions had 29% (95% CI: 14-46%) more emergency inpatient admissions and 24% (95% CI: 12-38%) more Emergency Department visits in adult care than in paediatric care. There were no significant differences associated with the transition for young people in the diabetes or no long-term conditions groups. CONCLUSIONS: The transition from paediatric to adult healthcare is associated with an increase in emergency hospital visits for young people with life-limiting conditions, but not for young people with diabetes or no long-term conditions. There may be scope to improve the transition for young people with life-limiting conditions. IMPACT: There is evidence for increases in emergency hospital visits when young people with life-limiting conditions transition to adult healthcare. These changes are not observed for comparator groups - young people with diabetes and young people with no known long-term conditions, suggesting they are not due to other transitions happening at similar ages. Greater sensitivity to changes at transition is achieved through estimation of the transition point from the data, reducing misclassification bias.

Estimation of age of transition from paediatric to adult healthcare for young people with long term conditions using linked routinely collected healthcare data.

INTRODUCTION: Healthcare transitions, including from paediatric to adult services, can be disruptive and cause a lack of continuity in care. Existing research on the paediatric-adult healthcare transition often uses a simple age cut-off to assign transition status. This risks misclassification bias, reducing observed changes at transition (adults are included in the paediatric group and vice versa) possibly to differing extents between groups that transition at different ages. OBJECTIVE: To develop and assess methods for estimating the transition point from paediatric to adult healthcare from routine healthcare records. METHODS: A retrospective cohort of young people (12 to 23 years) with long term conditions was constructed from linked primary and secondary care data in England. Inpatient and outpatient records were classified as paediatric or adult based on treatment and clinician specialities. Transition point was estimated using three methods based on record classification (First Adult: the date of first adult record; Last Paediatric: date of last paediatric record; Fitted: a date determined by statistical fitting). Estimated transition age was compared between methods. A simulation explored impacts of estimation approaches compared to a simple age cut-off when assessing associations between transition status and healthcare events. RESULTS: Simulations showed using an age-based cut-off at 16 or 18 years as transition point, common in research on transition, may underestimate transition-associated changes. Many health records for those aged <14 years were classified as adult, limiting utility of the First Adult approach. The Last Paediatric approach is least sensitive to this possible misclassification and may best reflect experience of the transition. CONCLUSIONS: Estimating transition point from routine healthcare data is possible and offers advantages over a simple age cut-off. These methods, adapted as necessary for data from other countries, should be used to reduce risk of misclassification bias in studies of transition in nationally representative data.

Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review.

BACKGROUND: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services. METHODS: MEDLINE, EMBASE, CINAHL, PsychINFO and Social Science Citation Index were searched. Studies published in English since 1990 including individuals with any life-limiting condition post- and pre-transition and reporting a health or social care use outcome were included. Data were extracted and quality assessed by one reviewer with 30% checked by an independent reviewer. RESULTS: Nineteen papers (18 studies) met the inclusion criteria. There was evidence for both increases and decreases (post- versus pre-transition) in outpatient attendance, inpatient admissions, inpatient bed days and health service costs; for increases in Emergency Department visits and for decreases in individuals receiving physiotherapy. CONCLUSIONS: Evidence for changes in healthcare use post- versus pre-transition is mixed and conflicting, although there is evidence for an increase in Emergency Department visits and a reduction in access to physiotherapy. More high-quality research is needed to better link changes in care to the transition. IMPACT: Evidence for changes in healthcare use associated with transition to adult services is conflicting. Emergency Department visits increase and access to physiotherapy decreases at transition. There are marked differences between care patterns in the United States and Canada.

Estimating the current and future prevalence of life-limiting conditions in children in England.

BACKGROUND: Previous studies showed increasing number of children with a life-limiting or life-threatening condition who may benefit from input from pediatric palliative care services. AIM: To estimate the current prevalence of children with a life-limiting condition and to model future prevalence of this population. DESIGN: Observational study using national inpatient hospital data. A population-based approach utilizing ethnic specific population projections was used to estimate future prevalence. SETTING/PARTICIPANTS: All children aged 0-19 years with a life-limiting condition diagnostic code recorded in Hospital Episodes Statistics data in England from 2000/01 to 2017/18. RESULTS: Data on 4,543,386 hospital episodes for 359,634 individuals were included. The prevalence of children with a life-limiting condition rose from 26.7 per 10,000 (95%CI 26.5-27.0) in 2001/02 to 66.4 per 10,000 (95% CI: 66.0-66.8) in 2017/18. Using a more restricted definition of a life-limiting condition reduced the prevalence from 66.4 to 61.1 per 10,000 (95%CI 60.7-61.5) in 2017/18. Highest prevalence was in the under 1-year age group at 226.5 per 10,000 and children with a congenital abnormality had the highest prevalence (27.2 per 10,000 (95%CI: 26.9-27.5)).The prevalence was highest among the most deprived group and in children of Pakistani origin.Predicted future prevalence of life-limiting conditions ranged from 67.0 (95%CI 67.7-66.3) to 84.22 (95%CI 78.66-90.17) per 10,000 by 2030. CONCLUSIONS: The prevalence of children with a life-limiting or life-threatening condition in England has risen over the last 17 years and is predicted to increase. Future data collections must include the data required to assess the complex health and social care needs of these children.

Place of death of children and young adults with a life-limiting condition in England: a retrospective cohort study.

OBJECTIVE: To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital. DESIGN: Observational cohort study using linked routinely collected data. SETTING: England. PATIENTS: Children aged 0-25 years who died between 2003 and 2017. MAIN OUTCOME MEASURES: Place of death: hospital, hospice, home. Multivariable multinomial logistic regression models. RESULTS: 39 349 children died: 73% occurred in hospital, 6% in hospice and 16% at home. In the multivariable models compared with dying in a hospital: neonates were less likely, and those aged 1-10 years more likely, than those aged 28 days to <1 year to die in hospice. Children from all ethnic minority groups were significantly less likely to die in hospice, as were those in the most deprived group (RR 0.8, 95% CI 0.7 to 0.9). Those who died from 2008 were more likely than those who died earlier to die in a hospice.Children with cancer (RR 4.4, 95% CI 3.8 to 5.1), neurological (RR 2.0, 95% CI 1.7 to 2.3) or metabolic (RR 3.7, 95% CI 3.0 to 4.6) diagnoses were more likely than those with a congenital diagnosis to die in a hospice.Similar patterns were seen for clinical/demographic factors associated with home versus hospital deaths. CONCLUSIONS: Most children with a life-limiting condition continue to die in the hospital setting. Further research on preferences for place of death is needed especially in children with conditions other than cancer. Paediatric palliative care services should be funded adequately to enable equal access across all settings, diagnostic groups and geographical regions.

The Caregiver Health Effects of Caring for Young Children with Developmental Disabilities: A Meta-analysis.

OBJECTIVES: Mothers of school age and older children with developmental disabilities experience poorer health than mothers of typically developing children. This review assesses the evidence for the effect on mothers' health of caring for young children with developmental disabilities, and the influence of different disability diagnoses and socioeconomic status. METHODS: Medline, EMBASE, PsycINFO and CINAHL were searched. Studies measuring at least one symptom, using a quantitative scale, in mothers of preschool children (0-5 years) with and without a diagnosed developmental disability were selected. Random effects meta-analysis was performed, and predictive intervals reported due to high expected heterogeneity. RESULTS: The meta-analysis included 23 estimates of association from 14 retrospective studies for the outcomes of stress (n = 11), depressive symptoms (n = 9), general health (n = 2) and fatigue (n = 1). Caring for a child with a developmental disability was associated with greater ill health (standardised mean difference 0.87; 95% predictive interval - 0.47, 2.22). The largest association was for mixed developmental disabilities (1.36; - 0.64, 3.36) and smallest for Down syndrome (0.38; - 2.17, 2.92). There was insufficient socioeconomic information to perform subgroup analysis. The small number of studies and data heterogeneity limited the precision of the estimates of association and generalizability of the findings. CONCLUSIONS FOR PRACTICE: Mothers of young children with developmental disabilities may have poorer health than those with typically developing children. Research is needed to identify whether the relationship is causal and, if so, interventions that could reduce the negative effect of caregiving.

GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study.

BACKGROUND: GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic diseases. AIM: To investigate the association between GP attendance patterns and hospital urgent and emergency care use. DESIGN AND SETTING: Retrospective cohort study using a primary care data source (Clinical Practice Research Datalink) in England. The cohort numbered 19 888. METHOD: CYP aged 0-25 years with an LLC were identified using Read codes (primary care) or International Classification of Diseases 10 th Revision (ICD-10) codes (secondary care). Emergency inpatient admissions and accident and emergency (A&E) attendances were separately analysed using multivariable, two-level random intercept negative binomial models with key variables of consistency and regularity of GP attendances. RESULTS: Face-to-face GP surgery consultations reduced, from a mean of 7.12 per person year in 2000 to 4.43 in 2015. Those consulting the GP less regularly had 15% (95% confidence interval [CI] = 10% to 20%) more emergency admissions and 5% more A&E visits (95% CI = 1% to 10%) than those with more regular consultations. CYP who had greater consistency of GP seen had 10% (95% CI = 6% to 14%) fewer A&E attendances but no significant difference in emergency inpatient admissions than those with lower consistency. CONCLUSION: There is an association between GP attendance patterns and use of urgent secondary care for CYP with LLCs, with less regular GP attendance associated with higher urgent secondary healthcare use. This is an important area for further investigation and warrants the attention of policymakers and GPs, as the number of CYP with LLCs living in the community rises.

Outpatient appointment non-attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study.

AIM: To test the hypothesis that children and young people with neurological conditions who missed outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who missed none. METHOD: Retrospective cohort of individuals aged up to 19 years with neurological conditions, identified from routine hospital data in England, UK from April 1st, 2003 to March 31st, 2015 using an International Statistical Classification of Diseases and Related Health Problems, coding framework. Counts of emergency inpatient admissions and A&E visits per person per year were modelled (random intercept negative binomial regression) with outpatient attendance the independent variable of interest. RESULTS: The cohort numbered 524 613 individuals. Those who missed outpatient appointments had 19 per cent (95% confidence interval [CI] 18-19) more emergency inpatient admissions and 16 per cent (95% CI 15-17) more A&E visits per year than those who missed none. 'Did not attends' had a larger increase in unplanned health care than patient or provider cancellations. If no appointments were missed, the models predict there would have been 107 000 fewer A&E visits from 2007/2008 to 2014/2015 and 104 000 fewer emergency inpatient admissions from 2003/2004 to 2014/2015. INTERPRETATION: Missed outpatient appointments were associated with increased unplanned health care. Improving outpatient attendance may have the potential to reduce emergency inpatient admissions and A&E visits. WHAT THIS PAPER ADDS: Missed outpatient appointments by children and young people with neurological conditions are associated with increased unplanned health care. Both emergency inpatient admissions and Accident and Emergency centre visits are increased. 'Did not attends' are more strongly associated with unplanned health care than cancellations.

ATENCIÓN AMBULATORIA SIN CITA Y ATENCIÓN MÉDICA NO PLANIFICADA PARA NIÑOS Y JÓVENES CON AFECCIONES NEUROLÓGICAS: UN ESTUDIO DE COHORTE RETROSPECTIVO: OBJETIVO: Evaluar la hipótesis de que los niños y los jóvenes con afecciones neurológicas que faltaron a las citas para pacientes ambulatorios tienen más ingresos de pacientes hospitalizados de emergencia, y visitas de accidentes y de emergencia, que aquellos que no faltaron a ninguno. MÉTODO: Cohorte retrospectiva de individuos de hasta 19 años con afecciones neurológicas, identificada a partir de datos hospitalarios de rutina en Inglaterra desde el 1 de abril de 2003 hasta el 31 de marzo de 2015 mediante una Clasificación Internacional de Enfermedades, 10ª Revisión, como marco de codificación. Utilizando modelos estadísticos se consideraron los numeros de ingresos de pacientes hospitalizados de emergencia y las visitas de accidentes y emergencias por persona por año (intercepción aleatoria de regresión binomial negativa) con asistencia ambulatoria como variable independiente de interés. RESULTADOS: La cohorte incluyo 524.613 individuos. Aquellos que faltaron a las citas para pacientes ambulatorios tuvieron un 19% (95% intervalo de confianza [IC] 18-19) más hospitalizaciones de emergencia y un 16% (95% CI 15-17) más visitas de accidentes y emergencias por año que aquellos que no faltaron a ninguna. "No asistió" tuvo un aumento mayor en la atención no planificada que las cancelaciones de pacientes o proveedores. Si no se faltara a ninguna cita, los modelos predicen que habría habido 107.000 visitas de accidentes y emergencias menos de 2007/2008 a 2014/2015 y 104.000 menos hospitalizaciones de emergencia para pacientes hospitalizados de 2003/2004 a 2014/2015. INTERPRETACIÓN: Las citas ambulatorias perdidas se asociaron con una mayor atención no planificada. Mejorar la asistencia ambulatoria puede tener el potencial de reducir las admisiones de pacientes hospitalizados de emergencia y las visitas de accidentes y emergencias.

NÃO-COMPARECIMENTO A CONSULTAS AGENDADAS E CUIDADO EM SAÚDE NÃO PLANEJADO PARA CRIANÇAS E JOVENS COM CONDIÇÕES NEUROLÓGICAS: UM ESTUDO DE COORTE RETROSPECTIVO: OBJETIVO: Testar a hipótese de que crianças e jovens com condições neurológicas que perderam consultas agendadas têm mais admissões de internações de emergência, de acidentes e visitas de emergência do que os que não perderam nenhuma consulta. MÉTODO: Uma coorte retrospectiva com idade de até 19 anos com condições neurológicas, identificada a partir de dados de rotina de um hospital na Inglaterra de 1 de abril de 2003 a 31 de março de 2015, usando o sistema de códigos da Classificação Internacional de Doenças, 10a edição. Quantidades de admissões em internações de emergência, e visitas de emergência e de acidentes por pessoa por ano foram modeladas (regressão binomial com intercepto aleatório negative), com frequência em consultas sendo a variável de interesse. RESULTADOS: A coorte atingiu 524.613 indivíduos. Aqueles que perderam consultas agendadas tiveram 19% (intervalo de confiança [IC] 95% 18-19) mais internações de emergência e 16% (IC 95% 15-17) mais visitas de acidente e emergência por ano do que aqueles que não perderam nenhuma. "Não comparecimentos" tiveram maior aumento de cuidado não planejado do que cancelamentos por parte do paciente ou professional. Se nenhuma consulta fosse perdida, os modelos predizem que haveria 107.000 menos visitas de emergência de 2007/2008 a 2014/2015 e 104.000 menos internações de emergência de 2003/2004 a 2014/2015. INTERPRETAÇÃO: Consultas perdidas foram associadas com aumento de cuidado não planejado. Melhorar a frequência a consultas pode ter o potencial de reduzir internações de emergência e visitas de emergência e de acidentes.

The impact of neurological disorders on hospital admissions for children and young people: a routine health data study.

INTRODUCTION: Neurological conditions are a major and increasing cause of hospitalisation among children and young people, but little is known about the impact of neurological conditions on hospital services in England, nor the factors that influence length of stay and bed days per year. OBJECTIVES: To quantify the hospital usage in children and young people related to neurological conditions, trends over time and variation by ethnicity and deprivation status. METHODS: An ICD10 coding framework identified a cohort of individuals aged 0-19 years with neurological conditions from linked routinely collected healthcare data from England (The Hospital Episode Statistics Admitted Patient Care dataset), from 1 April 2003 to 31 March 2015. Linked outpatient and accident and emergency data were used to supplement missing demographic data. Length of stay and bed days per year per person were calculated. These were separately modelled using random intercept multivariable negative binomial regressions with gender, age, ethnic group, diagnostic group, region of residence and deprivation category as predictors. RESULTS: 524,442 individuals were identified over the study period, increasing from 49,928 in 2003/04 to 102,840 in 2014/15. Neurological conditions account for 8.8% of inpatient bed days in the 0-14 year old age group. Length of stay and bed days per year vary primarily by age group - e.g. Under 1 year olds had 1.85 times (95%CI 1.83-1.86%) longer stays and over double (2.36 times, 95%CI 2.34-2.37 times) the number of bed days per person per year compared to 5 to 9 year olds - and main diagnostic group, with smaller variations by ethnic group, deprivation and region. CONCLUSIONS: Neurological conditions in children and young people have a significant and increasing impact on the NHS in England. Falls in length of stay and bed days per person are more than offset by increasing numbers of children and young people with neurological diagnoses. Variations in length of stay and bed days per year by diagnostic group, ethnic group, age group, deprivation category and region should be taken into account in resource planning.

Comparing routine inpatient data and death records as a means of identifying children and young people with life-limiting conditions.

BACKGROUND: Recent estimates of the number of children and young people with life-limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data. AIM: To compare routine inpatient data and death records as means of identifying life-limiting conditions in children and young people. DESIGN: Two national cohorts of children and young people with a life-limiting condition (primary cohort from England with a comparator cohort from Scotland) were identified using linked routinely collected healthcare and administrative data. PARTICIPANTS: A total of 37,563 children and young people with a life-limiting condition in England who died between 1 April 2001 and 30 March 2015 and 2249 children and young people with a life-limiting condition in Scotland who died between 1 April 2003 and 30 March 2014. RESULTS: In England, 16,642 (57%) non-neonatal cohort members had a life-limiting condition recorded as the underlying cause of death; 3364 (12%) had a life-limiting condition-related condition recorded as the underlying cause and 3435 (12%) had life-limiting conditions recorded only among contributing causes. In all, 5651 (19%) non-neonates and 3443 (41%) neonates had no indication of a life-limiting condition recorded in their death records. Similar results were seen in Scotland (overall, 16% had no indication of life-limiting conditions). In both cohorts, the recording of life-limiting condition was highest among those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses. CONCLUSION: Using death record data alone to identify children and young people with life-limiting condition - and therefore those who would require palliative care services - would underestimate the numbers. This underestimation varies by age, deprivation, ethnicity and diagnostic group.

How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study.

OBJECTIVE: To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0-25 years in Scotland with life-limiting conditions (LLCs). DESIGN: National cohort of CYP with LLCs using linked routinely collected healthcare data. SETTING: Scotland. PATIENTS: 20 436 CYP identified as having LLCs and resident in Scotland between 1 April 2009 and 31 March 2014. MAIN OUTCOME: Clinical stage based on emergency inpatient and intensive care unit admissions and date of death. RESULTS: Over 2200 CYP with LLCs in Scotland were unstable, deteriorating or dying in each year. Compared with 1-year-olds to 5-year-olds, children under 1 year of age had the highest risk of instability (OR 6.4, 95% CI 5.7 to 7.1); all older age groups had lower risk. Girls were more likely to be unstable than boys (OR 1.15, 95% CI 1.06 to 1.24). CYP of South Asian (OR 1.61, 95% CI 1.28 to 2.01), Black (OR 1.58, 95% CI 1.04 to 2.41) and Other (OR 1.33, 95% CI 1.02 to 1.74) ethnicity were more likely to experience instability than White CYP. Deprivation was not a significant predictor of instability. Compared with congenital abnormalities, CYP with most other primary diagnoses had a higher risk of instability; only CYP with a primary perinatal diagnosis had significantly lower risk (OR 0.23, 95% CI 0.19 to 0.29). CONCLUSIONS: The large number of CYP with LLCs who are unstable, deteriorating or dying may benefit from input from specialist paediatric palliative care. The age group under 1 and CYP of South Asian, Black and Other ethnicities should be priority groups.

A Comparison of the Ability of the Physiologic Components of Medical Emergency Team Criteria and the U.K. National Early Warning Score to Discriminate Patients at Risk of a Range of Adverse Clinical Outcomes.

OBJECTIVE: To compare the ability of medical emergency team criteria and the National Early Warning Score to discriminate cardiac arrest, unanticipated ICU admission and death within 24 hours of a vital signs measurement, and to quantify the associated workload. DESIGN: Retrospective cohort study. SETTING: A large U.K. National Health Service District General Hospital. PATIENTS: Adults hospitalized from May 25, 2011, to December 31, 2013. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We applied the National Early Warning Score and 44 sets of medical emergency team criteria to a database of 2,245,778 vital signs sets (103,998 admissions). The National Early Warning Score's performance was assessed using the area under the receiver-operating characteristic curve and compared with sensitivity/specificity for different medical emergency team criteria. Area under the receiver-operating characteristic curve (95% CI) for the National Early Warning Score for the combined outcome (i.e., death, cardiac arrest, or unanticipated ICU admission) was 0.88 (0.88-0.88). A National Early Warning Score value of 7 had sensitivity/specificity values of 44.5% and 97.4%, respectively. For the 44 sets of medical emergency team criteria studied, sensitivity ranged from 19.6% to 71.2% and specificity from 71.5% to 98.5%. For all outcomes, the position of the National Early Warning Score receiver-operating characteristic curve was above and to the left of all medical emergency team criteria points, indicating better discrimination. Similarly, the positions of all medical emergency team criteria points were above and to the left of the National Early Warning Score efficiency curve, indicating higher workloads (trigger rates). CONCLUSIONS: When medical emergency team systems are compared to a National Early Warning Score value of greater than or equal to 7, some medical emergency team systems have a higher sensitivity than National Early Warning Score values of greater than or equal to 7. However, all of these medical emergency team systems have a lower specificity and would generate greater workloads.

Can binary early warning scores perform as well as standard early warning scores for discriminating a patient's risk of cardiac arrest, death or unanticipated intensive care unit admission?

INTRODUCTION: Although the weightings to be summed in an early warning score (EWS) calculation are small, calculation and other errors occur frequently, potentially impacting on hospital efficiency and patient care. Use of a simpler EWS has the potential to reduce errors. METHODS: We truncated 36 published 'standard' EWSs so that, for each component, only two scores were possible: 0 when the standard EWS scored 0 and 1 when the standard EWS scored greater than 0. Using 1564,153 vital signs observation sets from 68,576 patient care episodes, we compared the discrimination (measured using the area under the receiver operator characteristic curve--AUROC) of each standard EWS and its truncated 'binary' equivalent. RESULTS: The binary EWSs had lower AUROCs than the standard EWSs in most cases, although for some the difference was not significant. One system, the binary form of the National Early Warning System (NEWS), had significantly better discrimination than all standard EWSs, except for NEWS. Overall, Binary NEWS at a trigger value of 3 would detect as many adverse outcomes as are detected by NEWS using a trigger of 5, but would require a 15% higher triggering rate. CONCLUSIONS: The performance of Binary NEWS is only exceeded by that of standard NEWS. It may be that Binary NEWS, as a simplified system, can be used with fewer errors. However, its introduction could lead to significant increases in workload for ward and rapid response team staff. The balance between fewer errors and a potentially greater workload needs further investigation.

Are observation selection methods important when comparing early warning score performance?

INTRODUCTION: Sicker patients generally have more vital sign assessments, particularly immediately before an adverse outcome, and especially if the vital sign monitoring schedule is driven by an early warning score (EWS) value. This lack of independence could influence the measured discriminatory performance of an EWS. METHODS: We used a population of 1564,143 consecutive vital signs observation sets collected as a routine part of patients' care. We compared 35 published EWSs for their discrimination of the risk of death within 24h of an observation set using (1) all observations in our dataset, (2) one observation per patient care episode, chosen at random and (3) one observation per patient care episode, chosen as the closest to a randomly selected point in time in each episode. We compared the area under the ROC curve (AUROC) as a measure of discrimination for each of the 35 EWSs under each observation selection method and looked for changes in their rank order. RESULTS: There were no significant changes in rank order of the EWSs based on AUROC between the different observation selection methods, except for one EWS that included age among its components. Whichever method of observation selection was used, the National Early Warning Score (NEWS) showed the highest discrimination of risk of death within 24h. AUROCs were higher when only one observation set was used per episode of care (significantly higher for many EWSs, including NEWS). CONCLUSIONS: Vital sign measurements can be treated as if they are independent - multiple observations can be used from each episode of care--when comparing the performance and ranking of EWSs, provided no EWS includes age.

Aggregate National Early Warning Score (NEWS) values are more important than high scores for a single vital signs parameter for discriminating the risk of adverse outcomes.

INTRODUCTION: The Royal College of Physicians (RCPL) National Early Warning Score (NEWS) escalates care to a doctor at NEWS values of ≥5 and when the score for any single vital sign is 3. METHODS: We calculated the 24-h risk of serious clinical outcomes for vital signs observation sets with NEWS values of 3, 4 and 5, separately determining risks when the score did/did not include a single score of 3. We compared workloads generated by the RCPL's escalation protocol and for aggregate NEWS value alone. RESULTS: Aggregate NEWS values of 3 or 4 (n=142,282) formed 15.1% of all vital signs sets measured; those containing a single vital sign scoring 3 (n=36,207) constituted 3.8% of all sets. Aggregate NEWS values of either 3 or 4 with a component score of 3 have significantly lower risks (OR: 0.26 and 0.53) than an aggregate value of 5 (OR: 1.0). Escalating care to a doctor when any single component of NEWS scores 3 compared to when aggregate NEWS values ≥5, would have increased doctors' workload by 40% with only a small increase in detected adverse outcomes from 2.99 to 3.08 per day (a 3% improvement in detection). CONCLUSIONS: The recommended NEWS escalation protocol produces additional work for the bedside nurse and responding doctor, disproportionate to a modest benefit in increased detection of adverse outcomes. It may have significant ramifications for efficient staff resource allocation, distort patient safety focus and risk alarm fatigue. Our findings suggest that the RCPL escalation guidance warrants review.