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

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

Summary 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

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 relationshipHow 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 underrecording. 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

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

Vulnerable Family Meetings: A Way of Promoting Team Working in GPs’ Everyday Responses to Child Maltreatment?

This study uses observations of team meetings and interviews with 17 primary care professionals in four GP practices in England to generate hypotheses about how “vulnerable family” team meetings might support responses by GPs to maltreatment-related concerns and joint working with other professionals. These meetings are also called “safeguarding meetings”. The study found that vulnerable family meetings were used as a way of monitoring children or young people and their families and supporting risk assessment by information gathering. Four factors facilitated the meetings: meaningful information flow into the meetings from other agencies, systematic ways of identifying cases for discussion, limiting attendance to core members of the primary care team and locating the meeting as part of routine clinical practice. Our results generate hypotheses about a model of care that can be tested for effectiveness in terms of service measures, child and family outcomes, and as a potential mechanism for other professionals to engage and support GPs in their everyday responses to vulnerable and maltreated children. The potential for adverse as well as beneficial effects should be considered from involving professionals outside the core primary care team (e.g., police, children’s social care, education and mental health services)

List of ‘maltreatment-related’ codes used to ascertain cases in THIN (Read codes shown are codes used ≥50 times in our dataset in 2009–10, ordered by code chapter).

*<p>Read Version 2 (5-Byte).For more detail on frequency of codes in THIN, sees ‘supplementary material’ at <a href="http://www.clininf.eu/maltreatment" target="_blank">www.clininf.eu/maltreatment</a>.</p>**<p>13IF code with a more specific meaning due to the addition of the “.11” term code.</p

Senstivity analyses.

<p>Senstivity analyses.</p