Adverse childhood experiences (ACEs) are traumatic, violent or neglectful experiences that can affect children while growing up. These events may range from child maltreatment to domestic violence or experiencing parental mental illness. ACEs can have profound effects on children's health and development and have been linked to increased healthcare costs, life-long disabilities later in life, and premature death.
ACEs are preventable. However, many ACEs are very difficult to measure in childhood. Most studies rely on adults' self-reports many years after the event happened when it's more difficult to prevent or reduce the harmful effects of ACEs. Studies in the UK that follow children over time are based on hospital admissions and specific ACEs in isolation (e.g. parental substance misuse). Other studies rely solely on parental reports of ACEs. Most studies, therefore, underestimate the burden of ACEs in the general population and provide limited insights into their longer-term effects.
In the UK, mothers’ and children’s data can be linked across services. The ability to link mothers’ and children’s records provides an opportunity to measure adversity in mothers before pregnancy, during childhood and intergenerationally. We have developed indicators to measure ACEs in linked health care records of mothers and children who present to services before and after birth. This study aims to use these ACE indicators to examine their association with long-term mental and physical health outcomes, including death, among children, mothers and potential fathers.
We aim to use developed indicators of adverse childhood experiences (ACEs) in primary and secondary care to examine the association between ACEs and mortality and poorer health outcomes in mothers, fathers and children (born 1997-latest available data). We hope to use a birth cohort based on the CPRD mother-baby link (MBL) with linked fathers followed across CPRD, the Hospital Episode Statistics (HES), Index of Multiple Deprivation (IMD) and ONS for mortality.
We will focus on outcomes from ACEs measured during two interlinked childhood periods with public health importance for developing strategies to reduce risks of future harm.
1) Outcomes from ACEs measured pre-birth and childhood: We will use multivariable cox-proportional hazard models and logistic models to investigate to what extent different ACEs in childhood (measured -2 years pre-birth up to 5 years after birth) increase risk for all/cause-specific mortality, and separately, longer-term physical and mental health problems, relative to unexposed mothers, fathers and children. We will also examine whether outcomes vary depending on different developmental periods (infancy, 0-2 years; preschool, 3-5 years).
2) Outcomes from ACEs in later childhood: We will use multivariable cox-proportional hazard models to investigate to what extent different ACEs (measured 6-19 years post-birth) increase risk for all/cause-specific mortality, and separately, longer-term physical and mental health problems. We will also examine whether outcomes vary depending children's age (6-11y, 12-16y) of exposure and by previous exposure to ACEs (-2 years pre-birth to 5 years after birth).
This study forms one part of a series of planned studies examining ACEs in electronic health records (EHRs) involving (1) developing indicators for measuring ACEs in routine data (ISAC 19_162R), (2) a descriptive study on prevalences and incidence estimates of ACEs (ISAC 19_162R), and (3) the current study, investigating the longer-term association with ACEs in children, mothers and fathers.
Primary outcomes for maternal/child records in CPRD/HES/ONS:
• All-cause mortality as recorded in ONS, and where applicable in CPRD/HES;
Secondary outcomes for maternal/child records:
• Cause-specific mortality as recorded in ONS, and where applicable in CPRD/HES;
Secondary outcomes for child records in CPRD/HES/ONS:
• Long-term health conditions (e.g. chronic pain; cancers; chronic fatigue etc.);
• Psychiatric disorders grouped per the ICD-10 and DSM-5 diagnosis clusters;
• Child and maternal birth outcomes (e.g. preterm delivery, low birth weight and other related birth conditions);
Long-term health conditions will include a broad range of health morbidities, classified based on the Global Burden of Diseases, Injuries, and Risk Factors Study classifications of morbidity to aid with comparative purposes of estimates. We will use existing indicators and validated algorithms from the open-source platform “HDR UK Phenotype Library” (https://phenotypes.healthdatagateway.org/home/), and adapt Hardelid et al.'s indicators for chronic health conditions in children.
Where possible, cause-specific mortality will be classified according to the ONS classifications of avoidable mortality using ICD-9/10 codes. Additional Read and ICD codes will be identified using free-text searches of code dictionaries and by searching online code repertoires. If not already classified, ICD-10 codes will be categorised into broad diagnosis groups using the Clinical Classifications Software (CCS developed by the Agency for Healthcare Research and Quality (AHRQ). The cross-map package by NHS digital will be used to guide combinations of Read and ICD-10 codes to classify similar diagnoses across sources. The final list of health conditions will reflect a refined set of outcomes with public health importance based on prevalence, homogeneity with previous research and input from a patient and expert stakeholder group co-ordinated by the NIHR Children and Families Policy Research Unit (CPRU).
Ruth Gilbert - Chief Investigator - University College London ( UCL )
Shabeer Syed - Corresponding Applicant - University College London ( UCL )
Arturo Gonzalez-Izquierdo - Collaborator - University College London ( UCL )
gene feder - Collaborator - University of Bristol
Janice Allister - Collaborator - Royal College Of General Practitioners - RCGP
Leah Li - Collaborator - University College London ( UCL )
Linda Wijlaars - Collaborator - University College London ( UCL )
Louise Johns - Collaborator - Oxford Health NHS Foundation Trust
Rebecca Lacey - Collaborator - University College London ( UCL )
Arturo Gonzalez-Izquierdo - Collaborator - University College London ( UCL )
gene feder - Collaborator - University of Bristol
Janice Allister - Collaborator - Royal College Of General Practitioners - RCGP
Leah Li - Collaborator - University College London ( UCL )
Linda Wijlaars - Collaborator - University College London ( UCL )
Louise Johns - Collaborator - Oxford Health NHS Foundation Trust
Rebecca Lacey - Collaborator - University College London ( UCL )
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation;CPRD Aurum Mother-Baby Link;CPRD GOLD Mother-Baby Link