Children with life-limiting conditions in paediatric intensive care units: a national cohort, data linkage study

Objective: To determine how many children are admitted to paediatric intensive care unit (PICU) with life-limiting conditions (LLCs) and their outcomes. Design: National cohort, data-linkage study. Setting: PICUs in England. Patients: Children admitted to a UK PICU (1 January 2004 and 31 March 2015) were identified in the Paediatric Intensive Care Audit Network dataset. Linkage to hospital episodes statistics enabled identification of children with a LLC using an International Classification of Diseases (ICD10) code list. Main outcome measures: Random-effects logistic regression was undertaken to assess risk of death in PICU. Flexible parametric survival modelling was used to assess survival in the year after discharge. Results: Overall, 57.6% (n=89 127) of PICU admissions and 72.90% (n=4821) of deaths in PICU were for an individual with a LLC. The crude mortality rate in PICU was 5.4% for those with a LLC and 2.7% of those without a LLC. In the fully adjusted model, children with a LLC were 75% more likely than those without a LLC to die in PICU (OR 1.75 (95% CI 1.64 to 1.87)). Although overall survival to 1 year postdischarge was 96%, children with a LLC were 2.5 times more likely to die in that year than children without a LLC (OR 2.59 (95% CI 2.47 to 2.71)). Conclusions: Children with a LLC accounted for a large proportion of the PICU population. There is an opportunity to integrate specialist paediatric palliative care services with paediatric critical care to enable choice around place of care for these children and families

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 lifelimiting 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

Comparison of ethnic group classification using naming analysis and routinely collected data: application to cancer incidence trends in children and young people

Objective: Inpatient Hospital Episode Statistics (HES) ethnicity data are available but not always collected and data quality can be unreliable. This may have implications when assessing outcomes by ethnicity. An alternative method for assigning ethnicity is using naming algorithms. We investigate if the association between ethnicity and cancer incidence varied dependent upon how ethnic group was assigned. Design: Population-based cancer registry cohort study Setting: Yorkshire, UK Participants: Cancer registrations from 1998-2009 in children and young people (0-29 years) from a specialist cancer register in Yorkshire, UK (N=3998) were linked to inpatient HES data to obtain recorded ethnicity. Patient?s names, recorded in the cancer register, were matched to an ethnic group using the naming algorithm software Onomap. Each source of ethnicity was categorised as White, South Asian (SA) or Other and a further two indicators were defined based on the combined ethnicities of HES and Onomap, one prioritising HES results, the other prioritising Onomap. Outcomes: Incidence rate ratios (IRR) between ethnic groups were compared using Poisson regression for all cancers combined, leukaemia, lymphoma and central nervous system (CNS) tumours. Results: Depending on the indicator used, 7.1% to 8.6% of the study population were classified as SA. For all cancers there were no statistically significant differences between White and SA groups using any indicator, however for lymphomas significant differences were only evident using one of the ?Combined? indicators (IRR=1.36 (95%CI 1.08, 1.71)) and for CNS tumours incidence was lower using three of the four indicators. For the other ethnic group the IRR for all cancers ranged from 0.78 (0.65, 0.94) to 1.41 (1.23, 1.62). Conclusions: Using different methods of assigning ethnicity can result in different estimates of ethnic variation in cancer incidence. Combining ethnicity from multiple sources results in a more complete estimate of ethnicity than the use of one single source

Examining the validity and utility of two secondary sources of food environment data against street audits in England

Background: Secondary data containing the locations of food outlets is increasingly used in nutrition and obesity research and policy. However, evidence evaluating these data is limited. This study validates two sources of secondary food environment data: Ordnance Survey Points of Interest data (POI) and food hygiene data from the Food Standards Agency (FSA), against street audits in England and appraises the utility of these data. Methods: Audits were conducted across 52 Lower Super Output Areas in England. All streets within each Lower Super Output Area were covered to identify the name and street address of all food outlets therein. Audit-identified outlets were matched to outlets in the POI and FSA data to identify true positives (TP: outlets in both the audits and the POI/FSA data), false positives (FP: outlets in the POI/FSA data only) and false negatives (FN: outlets in the audits only). Agreement was assessed using positive predictive values (PPV: TP/(TP+FP)) and sensitivities (TP/(TP+FN)). Variations in sensitivities and PPVs across environment and outlet types were assessed using multi-level logistic regression. Proprietary classifications within the POI data were additionally used to classify outlets, and agreement between audit-derived and POI-derived classifications was assessed. Results: Street audits identified 1172 outlets, compared to 1100 and 1082 for POI and FSA respectively. PPVs were statistically significantly higher for FSA (0.91, CI: 0.89-0.93) than for POI (0.86, CI: 0.84-0.88). However, sensitivity values were not different between the two datasets. Sensitivity and PPVs varied across outlet types for both datasets. Without accounting for this, POI had statistically significantly better PPVs in rural and affluent areas. After accounting for variability across outlet types, FSA had statistically significantly better sensitivity in rural areas and worse sensitivity in rural middle affluence areas (relative to deprived). Audit-derived and POI-derived classifications exhibited substantial agreement (p < 0.001; Kappa = 0.66, CI: 0.63 - 0.70). Conclusions: POI and FSA data have good agreement with street audits; although both datasets had geographic biases which may need to be accounted for in analyses. Use of POI proprietary classifications is an accurate method for classifying outlets, providing time savings compared to manual classification of outlets

Is adolescent body mass index and waist circumference associated with the food environments surrounding schools and homes? A longitudinal analysis

Background: There has been considerable interest in the role of access to unhealthy food options as a determinant of weight status. There is conflict across the literature as to the existence of such an association, partly due to the dominance of cross-sectional study designs and inconsistent definitions of the food environment. The aim of our study is to use longitudinal data to examine if features of the food environment are associated to measures of adolescent weight status. Methods: Data were collected from secondary schools in Leeds (UK) and included measurements at school years 7 (ages 11/12), 9 (13/14), and 11 (15/16). Outcome variables, for weight status, were standardised body mass index and standardised waist circumference. Explanatory variables included the number of fast food outlets, supermarkets and ‘other retail outlets’ located within a 1 km radius of an individual’s home or school, and estimated travel route between these locations (with a 500 m buffer). Multi-level models were fit to analyse the association (adjusted for confounders) between the explanatory and outcome variables. We also examined changes in our outcome variables between each time period. Results: We found few associations between the food environment and measures of adolescent weight status. Where significant associations were detected, they mainly demonstrated a positive association between the number of amenities and weight status (although effect sizes were small). Examining changes in weight status between time periods produced mainly non-significant or inconsistent associations. Conclusions: Our study found little consistent evidence of an association between features of the food environment and adolescent weight status. It suggests that policy efforts focusing on the food environment may have a limited effect at tackling the high prevalence of obesity if not supported by additional strategies

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 37563 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, 16642 (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. 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 amongst those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses

Healthcare utilisation in overweight and obese children: a systematic review and meta-analysis

Objective: This systematic review and meta-analysis aims to systematically analyse the association of overweight and obesity with health service utilisation during childhood. Data sources: PubMed, MEDLINE, CINAHL, EMBASE and Web of Science. Methods: Observational studies published up to May 2020 that assessed the impact of overweight and obesity on healthcare utilisation in children and adolescents were included. Studies were eligible for inclusion if the included participants were ≤19 years of age. Findings from all included studies were summarised narratively. In addition, rate ratios (RRs) and 95% CIs were calculated in a meta-analysis on a subgroup of eligible studies. Outcome measures: Included studies reported association of weight status with healthcare utilisation measures of outpatient visits, emergency department (ED) visits, general practitioner visits, hospital admissions and hospital length of stay. Results: Thirty-three studies were included in the review. When synthesising the findings from all studies narratively, obesity and overweight were found to be positively associated with increased healthcare utilisation in children for all the outcome measures. Six studies reported sufficient data to meta-analyse association of weight with outpatient visits. Five studies were included in a separate meta-analysis for the outcome measure of ED visits. In comparison with normal-weight children, rates of ED (RR 1.34, 95% CI 1.07 to 1.68) and outpatient visits (RR 1.11, 95% CI 1.02 to 1.20) were significantly higher in obese children. The rates of ED and outpatient visits by overweight children were only slightly higher and non-significant compared with normal-weight children. Conclusions: Obesity in children is associated with increased healthcare utilisation. Future research should assess the impact of ethnicity and obesity-associated health conditions on increased healthcare utilisation in children with overweight and obesity. PROSPERO registration number: CRD4201809175

Multiple and Multidimensional life transitions in the context of life-limiting health conditions:Longitudinal study focussing on perspectives of Young Adults, Families and Professionals

Background: There is a dearth of literature that investigates life transitions of young adults (YAs) with life-limiting conditions, families and professionals. The scant literature that is available has methodological limitations, including not listening to the voice of YAs, collecting data retrospectively, at one time point, from one group’s perspective and single case studies. The aim of this study was to address the gaps found in our literature review and provide a clearer understanding of the multiple and multi-dimensional life transitions experienced by YAs and significant others, over a period of time. Methods: This qualitative study used a longitudinal design and data were collected using semi-structured interviews over a 6-month period at 3 time points. Participants included 12 YAs with life-limiting conditions and their nominated significant others (10 family members and 11 professionals). Data were analysed using a thematic analysis approach. Results: Life transitions of YA and significant others are complex; they experience multiple and multi-dimensional transitions across several domains. The findings challenge the notion that all life transitions are triggered by health transitions of YAs, and has highlighted environmental factors (attitudinal and systemic) that can be changed to facilitate smoother transitions in various aspects of their lives. Conclusions: This study makes a unique and significant contribution to literature. It provides evidence and rich narratives for policy makers and service providers to change policies and practices that are in line with the needs of YAs with life-limiting conditions as they transition to adulthood. Families and professionals have specific training needs that have not yet been met fully

The health of mothers of children with a life-limiting condition; a comparative cohort study

ObjectivesThis study aimed to quantify the incidence rates of common mental and physical health conditions in mothers of children with a life-limiting condition.MethodsComparative national longitudinal cohort study using linked primary and secondary care data from the Clinical Practice Research Datalink in England. Maternal-child dyads were identified in these data. Maternal physical and mental health outcomes were identified in the primary and secondary care datasets using previously developed diagnostic coding frameworks. Incidence rates of the outcomes were modelled using Poisson regression adjusting for deprivation, ethnicity and age and accounting for time at risk.ResultsA total of 35,683 mothers, 8,950 had a child with a life-limiting condition, 8,868 had a child with a chronic condition and 17,865 had a child with no long-term condition.The adjusted incidence rates of all of the physical and mental health conditionswere significantly higher in the mothers of children with a life-limiting condition when compared to those mothers with a child with no long-term condition. (e.g. depression IRR 1.21 (95%CI 1.13 to 1.30) cardiovascular disease IRR 1.73 (95%CI 1.27 to 2.36), death in mothers IRR 1.59 (95%CI 1.16 to 2.18).ConclusionsThis study clearly demonstrates the higher incidence rates of common and serious physical and mental health problems and death in mothers of children with a life limiting condition. Further research is required to understand how best to support these mothers, but healthcare providers should consider how they can target this population to provide preventative and treatment services