Title: Establishment of a national system to monitor the risks of adverse health outcomes among the entire population of survivors of childhood, teenage and young adult brain tumour in Britain
Funder: The Brain Tumour Charity

Abstract: BACKGROUND: There is no national system to track the health of everyone diagnosed with a brain tumour in Britain. We aim to address this serious gap in knowledge for everyone diagnosed with a brain tumour when young. AIMS: We would use modern computing methods to link the records relating to everyone diagnosed with a brain tumour in Britain when young, with several national registries/computerised databases containing details of people who develop specific illnesses. As a result we would be able to estimate the risk of brain tumour survivors developing specific illnesses. We would investigate how these risks vary for different groups of survivors. This would enable us to spot groups of survivors who experience high risks. WHY THIS RESEARCH IS NEEDED AND HOW IT WILL BENEFIT SURVIVORS OF A BRAIN TUMOUR From previous work relating to the British Childhood Cancer Survivor Study (BCCSS) we know that only 34% of brain tumour survivors were on regular hospital follow-up in relation to their brain tumour. But the BCCSS includes all survivors so we are able to know about the health of all survivors. HOW DOES THIS RESEARCH OFFER VALUE FOR MONEY? Work based on record linkages as proposed here has the double benefits of including every survivor and there is no cheaper way to track survivors. HOW WILL THIS RESEARCH BE CARRIED OUT? The proposed work will be based on two existing national studies of survivors: The British Childhood Cancer Survivor Study and The Teenage and Young Adult Cancer Survivor Study. Both studies would be linked to national registries/databases to obtain the causes of deaths, details of new cancers developing in survivors, details of illness resulting in hospitalisation, GP prescriptions and any use of community mental health facilities. HOW WILL THE PROJECT MEASURE AND MINIMISE THE IMPACT BRAIN TUMOURS HAVE ON PEOPLE'S LIVES? For the first time we would measure the risk of specific illnesses in every survivor of a brain tumour diagnosed in Britain under the age of 40 years. When evidence of a large excess of particular illness is found then there would need to be further studies to fully understand the factors causing the excess. This would indicate where there are opportunities for future prevention. PUBLIC INVOLVEMENT We are delighted to have the close involvement of the Research Involvement Network (RIN) at all stages of the proposed research, including dissemination of the results. PUBLIC, POLICY AND PRACTICAL IMPACT OF THE RESEARCH Such large-scale studies provide the most accurate evidence available nationally for: • feeding back to, educating and empowering survivors; • developing evidence-based clinical follow-up guidelines; • preparing survivorship care plans; • providing educational material to doctors and nurses; • evaluating the risks as well as benefits of proposals for future treatment; • advising national health authorities in relation to groups of survivors at particularly high risk for consideration of potential recall for counselling, screening or other interventions; • providing risk stratification information to NHS England to inform their Service Specifications and so impact the care of every survivor followed-up in an NHS hospital.

Lay abstract: BACKGROUND: There is no national system to track the health of everyone diagnosed with a brain tumour in Britain. We aim to address this serious gap in knowledge for everyone diagnosed with a brain tumour when young. AIMS: We would use modern computing methods to link the records relating to everyone diagnosed with a brain tumour in Britain when young, with several national registries/computerised databases containing details of people who develop specific illnesses. As a result we would be able to estimate the risk of brain tumour survivors developing specific illnesses. We would investigate how these risks vary for different groups of survivors. This would enable us to spot groups of survivors who experience high risks. WHY THIS RESEARCH IS NEEDED AND HOW IT WILL BENEFIT SURVIVORS OF A BRAIN TUMOUR From previous work relating to the British Childhood Cancer Survivor Study (BCCSS) we know that only 34% of brain tumour survivors were on regular hospital follow-up in relation to their brain tumour. But the BCCSS includes all survivors so we are able to know about the health of all survivors. HOW DOES THIS RESEARCH OFFER VALUE FOR MONEY? Work based on record linkages as proposed here has the double benefits of including every survivor and there is no cheaper way to track survivors. HOW WILL THIS RESEARCH BE CARRIED OUT? The proposed work will be based on two existing national studies of survivors: The British Childhood Cancer Survivor Study and The Teenage and Young Adult Cancer Survivor Study. Both studies would be linked to national registries/databases to obtain the causes of deaths, details of new cancers developing in survivors, details of illness resulting in hospitalisation, GP prescriptions and any use of community mental health facilities. HOW WILL THE PROJECT MEASURE AND MINIMISE THE IMPACT BRAIN TUMOURS HAVE ON PEOPLE'S LIVES? For the first time we would measure the risk of specific illnesses in every survivor of a brain tumour diagnosed in Britain under the age of 40 years. When evidence of a large excess of particular illness is found then there would need to be further studies to fully understand the factors causing the excess. This would indicate where there are opportunities for future prevention. PUBLIC INVOLVEMENT We are delighted to have the close involvement of the Research Involvement Network (RIN) at all stages of the proposed research, including dissemination of the results. PUBLIC, POLICY AND PRACTICAL IMPACT OF THE RESEARCH Such large-scale studies provide the most accurate evidence available nationally for: • feeding back to, educating and empowering survivors; • developing evidence-based clinical follow-up guidelines; • preparing survivorship care plans; • providing educational material to doctors and nurses; • evaluating the risks as well as benefits of proposals for future treatment; • advising national health authorities in relation to groups of survivors at particularly high risk for consideration of potential recall for counselling, screening or other interventions; • providing risk stratification information to NHS England to inform their Service Specifications and so impact the care of every survivor followed-up in an NHS hospital.

Research activity codes: 2.4 SURVEILLANCE AND DISTRIBUTION
Health categories: CANCER AND NEOPLASMS