Tracking the long-term health of children, teenagers and young adults treated for cancer in Britain

Children, teenagers and young adults who survive cancer can then face long-term health impacts as a result of their disease and the intense treatments they received, however, these impacts are poorly understood. Prof. Mike Hawkins and his team will conduct the largest and most comprehensive national study to date on the long-term impacts faced by survivors, focusing on GP prescriptions, use of mental health services and healthcare costs. The results could help to better support survivors, guide clinical practice and influence health policy.

Project Details

  • Project Title

    Establish a comprehensive surveillance system for adverse health outcomes in British survivors of childhood, teenage and young adult cancer

  • Lead Researcher

    Prof. Mike Hawkins

  • Research Centre

    University of Birmingham

  • City & Institution Postcode

    Birmingham, B15 2TY

  • Start Date

    1 January 2021

  • Duration

    36 months

  • Grant Amount

    £349,982.37

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Overview

Children, teenagers and young adults who survive cancer can then face long-term health impacts as a result of their disease and the intense treatments they received, however, these impacts are poorly understood. While some previous research has been conducted in this area, this has been constrained by certain limitations.

  1. Until now, there has not been national data available about GP prescriptions for survivors.
  2. Until now, there has not been national data available about the use of mental health facilities in the community by survivors.
  3. Until now, the long-term NHS healthcare costs relating to survivors have not been investigated.

Prof. Mike Hawkins and his team will address and overcome each of these three limitations in their new population study.

A lot of work has already been done to establish a national registry of survivors of childhood cancer, named the British Childhood Cancer Survivor Study (BCCSS), and a separate national registry of survivors of teenage and young adult cancer named the Teenage and Young Adult Cancer Survivor Study (TYACSS). Prof. Hawkins and his team plan to extend these two registries of survivors in several ways so that they can track the long-term health of survivors in a more complete way than was possible in the past.

The BCCSS and TYACSS are the largest registries of survivors of childhood and young person cancer in the world and date back to the 1960s, giving the longest follow-up data available to understand life-long health impacts. This means Prof. Hawkins and his team are in position to carry out some of the most comprehensive monitoring of survivors currently possible.

What difference will this project make?

There is no comprehensive national system to monitor adverse health outcomes among the entire population of survivors of childhood, teenage and young adult cancer in Britain. However, there already exists two established national population-based cohorts of such survivors. Prof. Hawkins and his team aim to use these cohorts to establish a system to monitor the risks of adverse health outcomes and healthcare costs among these survivors, and to determine how observed risks and costs compare with those expected from the general population. This will help to identify subgroups of survivors who experience substantially increased risk. Such large-scale and population-based investigations of risk would provide the most reliable and unbiased evidence available nationally for supporting survivors in the long term, guiding clinical practice and influencing health policy.

About the Research Team

Prof. Mike Hawkins, based at the University of Birmingham, played a fundamental role in establishing the BCCSS and TYACSS cohorts.

Prof. Hawkins will be working with a skilled team of experts to deliver this research. This includes Dr Raoul Reulen, a Senior Lecturer who led two landmark publications on long term health risks faced by children, teenagers and young adults who survive cancer. Dr Reulen will lead on much of the statistical analysis and record linkage.

Dr Peter Hall, based at the University of Edinburgh, is a Reader in Health Economics and Cancer Informatics and a practising Medical Oncologist. Dr Hall leads the University of Edinburgh Health Economics Research Group and has an outstanding record of publications in health economics and cancer survivorship. He will lead on the economic analyses and the record linkages in Scotland.

Dr Emanuela Molinari, based at NHS Greater Glasgow and Clyde, is a practising neurologist in neuro-oncology and will be providing invaluable insights on the long-term clinical implications of cancer survival and cancer treatment.

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