Improving outcomes for children and young people with cancer
The Yorkshire Specialist Register of Cancer in Children and Young People (YSRCCYP) maintains accurate collection of sociodemographic and clinical data on children, teenagers and young adults with cancer in Yorkshire. With connections to NHS and other datasets, the YSRCCYP informs the decision-making of local clinicians and commissioners with collaborative national and international epidemiological and outcomes research supported with infrastructure, expertise, and an extensive database encompassing over 15,000 square kilometres of Yorkshire and the Humber, with a population of five million.
YSRCCYP is recognised as the most effective specialist cancer register for the under-30s across the UK. It enables researchers to look at causes, patterns, associations, and outcomes using information not otherwise available from routine NHS sources. The efficacy of healthcare delivery for children and young people is assessed, with particular focus on survival and long-term health. World-leading epidemiological research by YSRCCYP, led by Professor of Epidemiology at the University of Leeds, Richard Feltbower and Professor Adam Glaser involves incidence and survival analyses, with cancer outcomes and health risks defined and quantified for young cancer patients. It aims to generate novel insights and respond to public health requests for investigations into suspected associations between specific environmental risk factors and childhood/young adult cancer.
Data relating to children with cancer in Yorkshire has been collected over decades – over 11,000 cancer patients and the YSRCCYP has over 120,000 linked records, such as those relating to mental health. The Yorkshire Register maintains the only database running continually from ages 0-29 in the UK, and provides more data of greater quality, depth and breadth than NHS Digital’s National Cancer Register. “Even though childhood cancer is rare and outcomes are good, this database is a gamechanger,” says Professor Richard Feltbower. “This is because, when looking at children, it’s about life years gained. It’s incredibly important, therefore, to look at long-term health. Some people on the register are now over 60 years old, so this is possible.”
Epidemiological research programmes using the YSRCCYP register to look at long-term effects have shown outcomes for children with cancer in Yorkshire are among the best in the world, with an overall survival rate of 86 per cent up to the age of 15.
“As more and more young people survive, those with the most common forms of cancer are more likely to die prematurely from toxicity of treatments prescribed than the cancer itself,’ says Prof Adam Glasser, Consultant and Professor of Paediatric Oncology and Late Effects. “So, it’s vitally important that the consequences of treatment, needed to obtain survival, are looked at.”
The data held in the YSRCCYP can do this and much more. In fact it has been used for a diverse range of research projects including: identifying factors which influence length of survival for low grade brain tumours; investigating unusual family patterns of cancers which occur within siblings; and recently, supporting a clinician-led project to enable tracking of UK paediatric oncology patients who have tested positive for COVID-19, the Paediatric Oncology Coronavirus Monitoring Project.
Current and future work of the YSRCCYP looks to examine data relating to health inequalities, specifically ethnicity variation in relation to cancer survival, which supports one of the University of Leeds’ Vice Chancellor’s priority areas. (https://spotlight.leeds.ac.uk/strategy/) Yorkshire and the Humber has a range of urban and rural communities, with a significant ethnic minority population in parts of West Yorkshire, mainly people of south Asian origin (Pakistani, Indian, Bangladeshi). The work involves linking health outcomes with data relating to poverty and deprivation, looking at disparities. Big differences have already been detected in adults with cancer in relation to the broader population, but there is much less evidence of this with childhood cancer.
Facilities within the Leeds Institute of Data Analytics (LIDA) enable innovative data links to be made, such as linking cancer and mental health datasets, which has shown teenagers with cancer are more likely to present with mental health issues than younger children with cancer. The research team are now looking to incorporate educational data from the National Pupil Database, which includes the Education and Health Care Plan (EHCP) for every child, as well as school absences. This will allow for more complex evaluations and extrapolation of useful, interesting data. “There are two things,” explains Prof. Feltbower. “One, the impact of childhood cancer diagnosis. Two, comparing the childhood cancer population with the whole of Yorkshire’s general population. It’s not only about overall but relative impact. For example, the data allows comparison of an Afghan refugee with cancer, with an Afghan refugee without cancer.”
In recognition of his work on this project, Dr. Richard Feltbower was recently promoted to Professor. A University of Leeds PhD students, Dr Nicola Hughes, has also been recognised with an NIHR fellowship after working as a Candlelighters research fellow.
The team are incredibly thankful for the support and funding, without which this life changing work could not be done. “For forty years, core funding for the YSRCCYP register has been provided by the Leeds-based children’s cancer charity, Candlelighters,” says Professor Feltbower. “A very positive external review, conducted recently, means we are expecting funding for three more years from Candlelighters. We are delighted with their support of this incredibly important project.”
The Candlelighters Trust has extended core funding for the YSRCCYP, enabling data collection and epidemiological research to continue until November 2022. Additional funding for 2017-2020 was provided by the Laura Crane Youth Cancer Trust.
To find out more about the YSRCCYP register visit https://ysrccyp.org.uk/
Professor Adam Glaser and Professor Richard Feltbower