Understanding the Epidemiology and the Risk of Developing Specific Mental Health Conditions among Children and Young People (CYP) Subsequent to Cancer Diagnosis

Study type
Protocol
Date of Approval
Study reference ID
24_003991
Lay Summary

Children and young people diagnosed with cancer experience many challenges, affecting not just their bodies but also their feelings and mental health. While not all children and young people with cancer will develop mental health problems, some do. It's important to understand the kinds of mental health issues they might have to optimise healthcare delivery. Studies show that children and young people with cancer are more likely to have problems like feeling anxious, sad, having trouble with attention, or being on the autism spectrum. We don't fully understand factors linked with why children and young people have these problems, but things like gender, ethnicity, how much money a family has, and the type of cancer they have might play a role.

We plan to examine patients’ electronic health records, determine if children and young people with cancer are more likely to have mental health issues than their brothers and sisters and other children and young people without cancer. We also want to figure out what things might make these mental health problems more likely, see how they change over time, and see if the COVID-19 pandemic has made things worse for them in terms of needing help with their mental health. A better understanding of psychological outcomes such an anxiety or depression and related factors such as gender and ethnicity will inform clinical care of patients diagnosed with cancer.

Technical Summary

Despite the high burden of poor mental health outcomes among CYP diagnosed with cancer, a limited number of population-based research describe the epidemiology and related risk factors for poor mental health outcomes in this group. The potential risk of poor mental health outcomes among CYP diagnosed with cancer in relation to sex, socioeconomic factors, ethnicity, urbanicity, late effects such as and concurrent chronic conditions is poorly understood. Furthermore, there is limited understanding of the pattern of poor mental health outcomes post cancer diagnosis, and the impact of the COVID-19 pandemic.

We plan to utilise CPRD Aurum's interlinked primary and secondary care records, hospitalisation data, mortality data, deprivation data, and rural-urban classification data. The Mother-Baby Database will also be used to identify siblings of CYP diagnosed with cancer. Ethnicity record linkage will enable us to investigate potential ethnic disparities. Baseline characteristics will be presented as frequencies and percentages for categorical variables. We will apply s Fine-Gray proportional sub-distribution regression model to estimate the overall cumulative incidence values at different time increments post cancer diagnosis. Cumulative incidence values will be stratified by age, sex, cancer diagnostic type, etc. Incidence density rates per 1,000 person-years will also be calculated. Furthermore, we will fit a Fine-Gray proportional sub-distribution regression model to estimate hazard ratios (HRs) for poor mental health outcomes and corresponding 95% confidence intervals, with time since cancer diagnosis as an underlying time scale, controlling for an array of important risk factors such as gender, ethnicity, etc. This will allow us to quantify the risk of adverse outcomes among CYP diagnosed with cancer compared to siblings and age-, sex-, and general practice-matched comparator groups from the general population. Finally, to quantify temporal trends of risk over time, we will stratify HR estimates by duration of follow-up.

Health Outcomes to be Measured

Outcomes to be Measured
1. Psychiatric conditions, including
- Depression
- Anxiety disorders
- Post-traumatic stress disorder (PTSD)
- Obsessive compulsive disorder (OCD)
- Bipolar disorder
- Personality disorders
- Schizophrenia-spectrum disorders
- Severe mental illness
- Eating disorders

2. Neurodevelopmental conditions, including
- Autism spectrum disorder (ASD)
- Attention-deficit/hyperactivity disorder (ADHD)

3. Non-fatal self-harm and death by suicide

Collaborators

Darren Ashcroft - Chief Investigator - University of Manchester
Moe Zandy - Corresponding Applicant - University of Manchester
Claire Higham - Collaborator - The Christie NHS Foundation Trust
Louise Robinson - Collaborator - Central Manchester University Hospitals
Martin McCabe - Collaborator - University of Manchester
Matthew Carr - Collaborator - University of Manchester
Pearl Mok - Collaborator - University of Manchester
Roger Webb - Collaborator - University of Manchester
Shruti Garg - Collaborator - University of Manchester

Linkages

HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;CPRD Aurum Ethnicity Record;CPRD Aurum Mother-Baby Link;Practice Level Rural-Urban Classification