Identifying adverse childhood experiences with electronic health records of linked mothers and children
A multistage development and validation study establishing clinically relevant ACE indicators in routine healthcare data.
Published in The Lancet Digital Health
Read the foundational study detailing the development of the ACEs in EHRs library framework.
Adverse childhood experiences (ACEs) are potentially traumatic or neglectful events that can impact children's health and development. Identifying and measuring ACEs is a key step for early intervention and reducing long-term health risks. However, the lack of validated indicators in routine electronic health records (EHRs) poses a challenge for policy makers and service providers aiming to identify vulnerable families.
To address this gap, researchers utilised a population-based birth cohort in England, linking the primary and secondary care EHRs of mothers and their children. Candidate ACE indicators were systematically identified, and a multistage prediction framework was employed to develop clinically relevant indicators for measuring family adversity.
Key findings
Following review by an expert panel, the study successfully translated a comprehensive list of candidate codes into grouped ACE domains.
- Identified indicators: A total of 63 distinct ACE indicators were developed and validated for use in routine EHRs.
- Six distinct domains: These indicators represent six core domains: maternal mental health problems, maternal substance misuse, adverse family environments, child maltreatment, maternal intimate partner violence (IPV), and high-risk presentations of child maltreatment.
- High prevalence rate: The prevalence of any ACE recorded in primary and secondary care during the two years before and after birth was 39.1%.
- Predictive performance: Validation estimates demonstrated that the developed algorithms have good predictive performance for accurately identifying instances of child maltreatment or maternal IPV.
Clinical implications
The ACE domains established in this study align with the clinically meaningful presentations of vulnerable families seeking routine healthcare. The findings underscore the potential of using linked maternal and child EHRs to actively identify ACEs, aiding resource prioritisation and the development of trauma-informed care plans.
Because a significant proportion of ACEs are recorded in the period immediately preceding and following birth, the study highlights the importance of early primary care responses and the necessity of adopting "think-family" approaches in general practice. However, researchers note that routine implementation requires careful pilot testing to address ethical considerations and potential unintended harms.
Lead author Dr Shabeer Syed (UCL Great Ormond Street Institute of Child Health), said:
“This study represents a significant step in developing clinically relevant ACE indicators in EHRs. It offers practical insights for policymakers, service providers, and researchers working towards early intervention to support children and families exposed to adversity.”
