Up to one in three children in England have a long-term illness or disability, which can be limiting in terms of their quality of life. Children with long-term conditions or disability are more likely to require specialised medical services and frequent contact with healthcare services than other children. Caring for a child with a long-term condition or disability can be challenging and a major source of stress for parents, contributing to development of mental and physical health problems. We know little about the physical and mental health impact on siblings.
Our study aims to describe the health and wellbeing of children with long-term illness or disability and their families and determine how these vary according to socio-economic circumstances, UK region, and ethnic group. We will primarily focus on children with learning disability, autism or epilepsy, who are more likely to have multiple physical and mental health needs, requiring co-ordinated care across many different NHS services, schools and social care. We will describe their health outcomes compared to other children registered in GP practices, overall and those with a different chronic condition – asthma. Children’s records are linked to records from their mothers, fathers and siblings, enabling us to look at broader family wellbeing. The findings will help to inform policies relating to health or other services to improve the health of children with complex health needs, and their families.
Children with learning disabilities (LD), autism spectrum disorders (ASD) or epilepsy may have multiple physical and mental health needs, requiring frequent contacts with health care. Caring for a child with LD/ASD/epilepsy can be challenging and a source of stress leading to both mental and physical health problems for parents and siblings. This study aims to determine factors associated with variation in mental and physical health of children with neurodisability and their families.
First, we will use CPRD linked to HES and ONS mortality to estimate the prevalence of LD/ASD/epilepsy in children in England. We will develop a longitudinal cohort of all children and young people (CYP) aged <24 years. We will indicate CYP with a record of LD, associated condition (where ≥50% of cases are likely to have LD), ASD or epilepsy. We will describe regional, socio-economic and ethnic inequalities in prevalence of LD/ASD/epilepsy.
Second, we will describe variation in incidence of mental health problems, chronic conditions (by group), mortality, interactions with primary and secondary healthcare in children with LD/ASD/epilepsy compared to other children.
Third, we will use mother-baby link to describe incidence of mental health problems, GP consultations, types of chronic conditions and health behaviours related to stress/fatigue in mothers of children with LD/ASD compared to general population. We will define and evaluate the representativeness of sub-cohorts of siblings (indicated via mother’s record) and fathers (indicated using an algorithm based on family number recorded in mother’s record) and we will repeat all analyses for fathers and siblings.
We will use Poisson/negative binomial regression models to determine incidence rate ratios, logistic/log-binomial regression for comparisons of binary outcomes. All models will include demographics, quintile of Index of Multiple Deprivation score, region of residence, ethnic group, number of children in household to assess variation in outcomes by family’s socio-economic circumstances.
Primary outcomes: Prevalence of LD or ASD or epilepsy in children; Incidence of mental and physical health morbidity in parents and siblings of children with LD or ASD;
Secondary outcomes: Incidence of mental health illness in children with LD or ASD or epilepsy; Mortality in children with LD or ASD or epilepsy; Incidence of contacts with health care services for children with LD or ASD or epilepsy;
Pia Hardelid - Chief Investigator - University College London ( UCL )
Ania Zylbersztejn - Corresponding Applicant - University College London ( UCL )
Amalia Wagstaff - Collaborator - University College London ( UCL )
Arturo Gonzalez-Izquierdo - Collaborator - University College London ( UCL )
Linda Wijlaars - Collaborator - University College London ( UCL )
Muhammad Qummer ul Arfeen - Collaborator - University College London ( UCL )
Sophie Bennett - Collaborator - University College London ( UCL )
CPRD Mother-Baby Link;HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation