Trends in hospital admissions during transition from paediatric to adult services for young people with learning disabilities or autism: Population-based cohort study.

Background: Transition from paediatric to adult health care may disrupt continuity of care, and result in unmet health needs. We describe changes in planned and unplanned hospital admission rates before, during and after transition for young people with learning disability (LD), or autism spectrum disorders (ASD) indicated in hospital records, who are likely to have more complex health needs. Methods: We developed two mutually exclusive cohorts of young people with LD, and with ASD without LD, born between 1990 and 2001 in England using national hospital admission data. We determined the annual rate of change in planned and unplanned hospital admission rates before (age 10-15 years), during (16-18 years) and after (19-24 years) transition to adult care using multilevel negative binomial regression models, accounting for area-level deprivation, sex, birth year and presence of comorbidities. Findings: The cohorts included 51,291 young people with LD, and 46,270 autistic young people. Admission rates at ages 10-24 years old were higher for young people with LD (54 planned and 25 unplanned admissions per 100 person-years) than for autistic young people (17/100 and 16/100, respectively). For young people with LD, planned admission rates were highest and constant before transition (rate ratio [RR]: 0.99, 95% confidence interval [CI] 0.98-0.99), declined by 14% per year of age during (RR: 0.86, 95% CI: 0.85-0.88), and remained constant after transition (RR: 0.99, 95% CI: 0.99-1.00), mainly due to fewer admissions for non-surgical care, including respite care. Unplanned admission rates increased by 3% per year of age before (RR: 1.03, 95% CI: 1.02-1.03), remained constant during (RR: 1.01, 95% CI: 1.00-1.03) and increased by 3% per year after transition (RR: 1.03, 95% CI: 1.02-1.04). For autistic young people, planned admission rates increased before (RR: 1.06, 95% CI: 1.05-1.06), decreased during (RR: 0.95, 95% CI: 0.93-0.97), and increased after transition (RR: 1.05, 95%: 1.04-1.07). Unplanned admission rates increased most rapidly before (RR: 1.16, 95% CI: 1.15-1.17), remained constant during (RR: 1.01, 95% CI: 0.99-1.03), and increased moderately after transition (RR: 1.03, 95% CI: 1.02-1.04). Interpretation: Decreases in planned admission rates during transition were paralleled by small but consistent increases in unplanned admission rates with age for young people with LD and autistic young people. Decreases in non-surgical planned care during transition could reflect disruptions to continuity of planned/respite care or a shift towards provision of healthcare in primary care and community settings and non-hospital arrangements for respite care. Funding: National Institute for Health Research Policy Research Programme.

Identifying adverse childhood experiences with electronic health records of linked mothers and children in England: a multistage development and validation study.

BACKGROUND: Electronic health records (EHRs) of mothers and children provide an opportunity to identify adverse childhood experiences (ACEs) during crucial periods of childhood development, yet well developed indicators of ACEs remain scarce. We aimed to develop clinically relevant indicators of ACEs for linked EHRs of mothers and children using a multistage prediction model of child maltreatment and maternal intimate partner violence (IPV). METHODS: In this multistage development and validation study, we developed a representative population-based birth cohort of mothers and children in England, followed from up to 2 years before birth to up to 5 years after birth across the Clinical Practice Research Datalink (CPRD) GOLD (primary care), Hospital Episode Statistics (secondary care), and the Office for National Statistics mortality register. We included livebirths in England between July 1, 2004, and June 30, 2016, to mothers aged 16-55 years, who had registered with a general practitioner (GP) that met CPRD quality standards before 21 weeks of gestation. The primary outcome (reference standard) was any child maltreatment or maternal IPV in either the mother's or child's record from 2 years before birth (maternal IPV only) to 5 years after birth. We used seven prediction models, combined with expert ratings, to systematically develop indicators. We validated the final indicators by integrating results from machine learning models, survival analyses, and clustering analyses in the validation cohort. FINDINGS: We included data collected between July 1, 2002, and June 27, 2018. Of 376 006 eligible births, we included 211 393 mother-child pairs (422 786 patients) from 400 practices, of whom 126 837 mother-child pairs (60·0%; 240 practices) were randomly assigned to a derivation cohort and 84 556 pairs (40·0%; 160 practices) to a validation cohort. We included 63 indicators in six ACE domains: maternal mental health problems, maternal substance misuse, adverse family environments, child maltreatment, maternal IPV, and high-risk presentations of child maltreatment. Excluding the seven indicators in the reference standard, 56 indicators showed high discriminative validity for the reference standard of any child maltreatment or maternal IPV between 2 years before and 5 years after birth (validation cohort, area under the receiver operating characteristic curve 0·85 [95% CI 0·84-0·86]). During the 2 years before birth and 5 years after birth, the overall period prevalence of maternal IPV and child maltreatment (reference standard) was 2·3% (2876 of 126 837 pairs) in the derivation cohort and 2·3% (1916 of 84 556 pairs) in the validation cohort. During the 2 years before and after birth, the period prevalence was 39·1% (95% CI 38·7-39·5; 34 773 pairs) for any of the 63 ACE indicators, 22·2% (21·8-22·5%; 20 122 pairs) for maternal mental health problems, 15·7% (15·4-16·0%; 14 549 pairs) for adverse family environments, 8·1% (7·8-8·3%; 6808 pairs) for high-risk presentations of child maltreatment, 6·9% (6·7-7·2%; 7856 pairs) for maternal substance misuse, and 3·0% (2·9-3·2%; 2540 pairs) for any child maltreatment (2·4% [2·3-5·6%; 2051 pairs]) and maternal IPV (1·0% [0·8-1·0%; 875 pairs]). 62·6% (21 785 of 34 773 pairs) of ACEs were recorded in primary care only, and 72·3% (25 140 cases) were recorded in the maternal record only. INTERPRETATION: We developed clinically relevant indicators for identifying ACEs using the EHRs of mothers and children presenting to general practices and hospital admissions. Over 70% of ACEs were identified via maternal records and were recorded in primary care by GPs within 2 years of birth, reinforcing the importance of reviewing parental and carer records to inform clinical responses to children. ACE indicators can contribute to longitudinal surveillance informing public health policy and resource allocation. Further evaluation is required to determine how ACE indicators can be used in clinical practice. FUNDING: None.

Who comes back with what: a retrospective database study on reasons for emergency readmission to hospital in children and young people in England.

OBJECTIVE: To determine the proportion of children and young people (CYP) in England who are readmitted for the same condition. DESIGN: Retrospective cohort study. SETTING: National administrative hospital data (Hospital Episode Statistics). PARTICIPANTS: CYP (0-year-olds to 24-year-olds) discharged after an emergency admission to the National Health Service in England in 2009/2010. MAIN OUTCOME MEASURES: Coded primary diagnosis classified in six broad groups indicating reason for admission (infection, chronic condition, injury, perinatal related or pregnancy related, sign or symptom or other). We grouped readmissions as ≤30 days or between 31 days and 2 years after the index discharge. We used multivariable logistic regression to determine factors at the index admission that were predictive of readmission within 30 days. RESULTS: 9% of CYP were readmitted within 30 days. Half of the 30-day readmissions and 40% of the recurrent admissions between 30 days and 2 years had the same primary diagnosis group as the original admission. These proportions were consistent across age, sex and diagnostic groups, except for infants and young women with pregnancy-related problems (15-24 years) who were more likely to be readmitted for the same primary diagnostic group. CYP with underlying chronic conditions were readmitted within 30 days twice as often (OR: 1.93, 95% CI 1.89 to 1.99) compared with CYP without chronic conditions. CONCLUSIONS: Financial penalties for readmission are expected to incentivise more effective care of the original problem, thereby avoiding readmission. Our findings, that half of children come back with different problems, do not support this presumption.

Contribution of recurrent admissions in children and young people to emergency hospital admissions: retrospective cohort analysis of hospital episode statistics.

OBJECTIVE: To examine the contribution of recurrent admissions to the high rate of emergency admissions among children and young people (CYP) in England, and to what extent readmissions are accounted for by patients with chronic conditions. DESIGN: All hospital admissions to the National Health Service (NHS) in England using hospital episode statistics (HES) from 2009 to 2011 for CYP aged 0-24 years. We followed CYP for 2 years from discharge of their first emergency admission in 2009. We determined the number of subsequent emergency admissions, time to next admission, length of stay and the proportion of injury and chronic condition admissions measured by diagnostic codes in all following admissions. RESULTS: 869 895 children had an index emergency admission in 2009, resulting in a further 939 710 admissions (of which 600 322, or 64%, were emergency admissions) over the next 2 years. After discharge from the index admission, 32% of 274,986 (32%) children were readmitted within 2 years, 26% of these readmissions occurring within 30 days of discharge. Recurrent emergency admission accounted for 41% of all emergency admissions in the 2-year cohort and 66% of inpatient days. 41% of index admissions, but 76% of the recurrent emergency admissions, were in children with a chronic condition. CONCLUSIONS: Recurrent admissions contribute substantially to total emergency admissions. They often occur soon after discharge, and disproportionately affect CYP with chronic conditions. Policies aiming to discourage readmissions should consider whether they could undermine necessary inpatient care for children with chronic conditions.

A simple clinical coding strategy to improve recording of child maltreatment concerns: an audit study.

BACKGROUND: Recording concerns about child maltreatment, including minor concerns, is recommended by the General Medical Council (GMC) and National Institute for Health and Clinical Excellence (NICE) but there is evidence of substantial under-recording. AIM: To determine whether a simple coding strategy improved recording of maltreatment-related concerns in electronic primary care records. DESIGN AND SETTING: Clinical audit of rates of maltreatment-related coding before January 2010-December 2011 and after January-December 2012 implementation of a simple coding strategy in 11 English family practices. The strategy included encouraging general practitioners to use, always and as a minimum, the Read code 'Child is cause for concern'. A total of 25,106 children aged 0-18 years were registered with these practices. We also undertook a qualitative service evaluation to investigate barriers to recording. METHOD: Outcomes were recording of 1) any maltreatment-related codes, 2) child protection proceedings and 3) child was a cause for concern. RESULTS: We found increased recording of any maltreatment-related code (rate ratio 1.4; 95% CI 1.1-1.6), child protection procedures (RR 1.4; 95% CI 1.1-1.6) and cause for concern (RR 2.5; 95% CI 1.8-3.4) after implementation of the coding strategy. Clinicians cited the simplicity of the coding strategy as the most important factor assisting implementation. CONCLUSION: This simple coding strategy improved clinician's recording of maltreatment-related concerns in a small sample of practices with some 'buy-in'. Further research should investigate how recording can best support the doctor-patient relationship. HOW THIS FITS IN: Recording concerns about child maltreatment, including minor concerns, is recommended by the General Medical Council (GMC) and National Institute for Health and Clinical Excellence (NICE), but there is evidence of substantial under-recording. We describe a simple clinical coding strategy that helped general practitioners to improve recording of maltreatment-related concerns. These improvements could improve case finding of children at risk and information sharing.

Responses to concerns about child maltreatment: a qualitative study of GPs in England.

OBJECTIVES: To provide a rich description of current responses to concerns related to child maltreatment among a sample of English general practitioners (GPs). DESIGN: In-depth, face-to-face interviews (November 2010 to September 2011). Participants selected and discussed families who had prompted 'maltreatment-related concerns'. Thematic analysis of data. SETTING: 4 general practices in England. PARTICIPANTS: 14 GPs, 2 practice nurses and 2 health visitors from practices with at least 1 'expert' GP (expertise in child safeguarding/protection). RESULTS: The concerns about neglect and emotional abuse dominated the interviews. GPs described intense and long-term involvement with families with multiple social and medical problems. Narratives were distilled into seven possible actions that GPs took in response to maltreatment-related concerns. These were orientated towards whole families (monitoring and advocating), the parents (coaching) and children (opportune healthcare), and included referral to or working with other services and recording concerns. Facilitators of the seven actions were: trusting relationships between GPs and parents, good working relationships with health visitors and framing the problem/response as 'medical'. Narratives indicated significant time and energy spent building facilitating relationships with parents with the aim of improving the child's well-being. CONCLUSIONS: These GPs used core general practice skills for on-going management of families who prompted concerns about neglect and emotional abuse. Policy and research focus should be broadened to include strategies for direct intervention and on-going involvement by GPs, such as using their core skills during consultations and practice systems for monitoring families and encouraging presentation to general practice. Exemplars of current practice, such as those identified in our study, should be evaluated for feasibility and acceptability in representative general practice settings as well as tested for efficacy, safety and cost. The seven actions could form the basis for the 'lead professional' role in general practice as proposed in the 2013 version of 'Working Together 'guidance.

Variation in recorded child maltreatment concerns in UK primary care records: a cohort study using The Health Improvement Network (THIN) database.

OBJECTIVES: To determine variation over time and between practices in recording of concerns related to abuse and neglect (maltreatment) in children's primary care records. DESIGN: Retrospective cohort study using a United Kingdom representative primary care database. SETTING: 448 General Practices. PARTICIPANTS: In total 1,548, 972 children (<18 y) registered between 1995 and 2010. MAIN OUTCOME MEASURES: Change in annual incidence of one or more maltreatment-related codes per child year of registration. Variation between general practices measured as the proportion of registered children with one or more maltreatment-related codes during 3 years (2008-2010). RESULTS: From 1995-2010, annual incidence rates of any coded maltreatment-related concerns rose by 10.8% each year (95% confidence interval 10.5, 11.2; adjusted for sex, age and deprivation). In 2010 the rate was 9.5 per 1000 child years (95%CI: 9.3, 9.8), equivalent to a prevalence of 0.8% of all registered children in 2010. Across all practices, the median prevalence of children with any maltreatment-related codes in three years (2008 to 2010) was 0.9% (range 0%-13.4%; 11 practices (2.5%) had zero children with relevant codes in the same period). Once we accounted for sex, age, and deprivation, the prevalence for each practice was within two standard errors of the grand mean. CONCLUSIONS: General Practitioners (GPs) are far from disengaged from safeguarding children; they are consistently and increasingly recording maltreatment concerns. As these results are likely to underestimate the burden of maltreatment known to primary care, there is much scope for increasing recording in primary care records with implications for resources to respond to concerns about maltreatment. Interventions and policies should build on this evidence that the average GP in the UK is engaged in child safeguarding activity.

A simple approach to improve recording of concerns about child maltreatment in primary care records: developing a quality improvement intervention.

BACKGROUND: Information is lacking on how concerns about child maltreatment are recorded in primary care records. AIM: To determine how the recording of child maltreatment concerns can be improved. DESIGN AND SETTING: Development of a quality improvement intervention involving: clinical audit, a descriptive survey, telephone interviews, a workshop, database analyses, and consensus development in UK general practice. METHOD: Descriptive analyses and incidence estimates were carried out based on 11 study practices and 442 practices in The Health Improvement Network (THIN). Telephone interviews, a workshop, and a consensus development meeting were conducted with lead GPs from 11 study practices. RESULTS: The rate of children with at least one maltreatment-related code was 8.4/1000 child years (11 study practices, 2009-2010), and 8.0/1000 child years (THIN, 2009-2010). Of 25 patients with known maltreatment, six had no maltreatment-related codes recorded, but all had relevant free text, scanned documents, or codes. When stating their reasons for undercoding maltreatment concerns, GPs cited damage to the patient relationship, uncertainty about which codes to use, and having concerns about recording information on other family members in the child's records. Consensus recommendations are to record the code 'child is cause for concern' as a red flag whenever maltreatment is considered, and to use a list of codes arranged around four clinical concepts, with an option for a templated short data entry form. CONCLUSION: GPs under-record maltreatment-related concerns in children's electronic medical records. As failure to use codes makes it impossible to search or audit these cases, an approach designed to be simple and feasible to implement in UK general practice was recommended.