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Long-term outcomes in cancer survivors

Safe People

Organisation name

University of Edinburgh

Applicant name(s)

Emanuela Molinari

Funders/ Sponsors

UK Research and Innovation (UKRI)

Safe Projects

Project ID

DL-2021-045

Lay summary

Survivors of cancer diagnosed when young show a substantial increase in the risk of dying during adult life when compared to the general population. Treatment for cancer can also leave long term health problems, including those that only come to light in later life. There is currently insufficient research into the wider physical and mental health of childhood cancer survivors. This is despite these topics being ranked as top priority by survivors and their families in two recent UK-wide research priority setting exercises. The project responds to the increasing demand from the government, patients and their carers to quantify the impact of a childhood cancer diagnosis on later life. It makes use of recent NHS investment in electronic health data for research. The study will analyse data from the Scottish Cancer Registry linked with other routine health data. Statistical approaches and more sophisticated methods in network science will be used to understand which patients are at higher risk of long-term problems after treatment for their cancer. The research will form the basis of design recommendations for an NHS surveillance programme for survivors of childhood cancer.

Public benefit statement

Recent studies suggested that young people who have been treated for cancer may be at risk of long-term health problems (e.g., cardiovascular disease, other types of cancer). Mental health is a leading cause of disability and cancer survivors are more likely to report poor mental-health. Despite this, little is known about their physical and mental health risks in comparison to the normal population. There are around 1,800 new cancer cases in children in the UK every year, that's around 5 every day. “What interventions, including self-care, can reduce or reverse adverse short and long-term effects of cancer treatment?” and “What is the best method of follow-up and timing which causes the least psychological and physical harm, while ensuring relapse/complications are detected early?” are two of the top 10 cancer priority set by the James Lind Alliance Priority Setting Partnership. The study will address these questions using electronic health data thus allowing the design of a tailored surveillance system for survivors. The existing engagement of the applicant to charities (e.g., Children’s Cancer and Leukaemia Group, Children with Cancer UK, Danny Green Fund) will ensure dissemination of findings to the wider public in addition to the scientific community via peer-review publications.

Request category type

Public Health Research

Other approval committees

Latest approval date

20/01/2023

Safe Data

Dataset(s) name

Researcher-sourced data

Data sensitivity level

De-Personalised

Safe Setting

Access type

TRE