High intensity treatment at the end of life in children with cancer
Research type
Research Study
Full title
High intensity treatment at the end of life in children with cancer: retrospective, national,data linkage study
IRAS ID
290143
Contact name
Lorna K Fraser
Contact email
Sponsor organisation
University of York
Clinicaltrials.gov Identifier
NIHR129213, NIHR Funder
Duration of Study in the UK
1 years, 5 months, 30 days
Research summary
Around 4500 babies, children and teenagers in England and Wales will require end of life care each year. Currently, the provision of this care varies across the country and little is known about how this variation impacts on children and their families.
This research has three linked studies
Study 1 (a survey) will identify the different models of providing end of life care for babies, children and young people (age 0-18) in England and Wales. To do this, we will ask all cancer services for children and teenagers, and other wards that provide specialist care to babies (neonatal units) and children (paediatric intensive care units) to tell us how end of life care is provided in their service, who provides this care and how much it costs.
Study 2 (a qualitative study) will learn more about these models by interviewing bereaved parents about their experiences of their child’s care at the end of their life, the impacts of this care, and how care could have been improved. We will also run group interviews with healthcare professionals to explore their experiences of meeting children’s end of life needs and their views on the factors that influence this.
Study 3 (a quantitative study) will investigate the impacts (which we call outcomes) of the different models of end of life care for children and their families. The findings from study 2 will help us to decide which outcomes to measure but these are likely to include quality of care at the end of life, place of death, whether care is planned (advance care planning), and treatments at the end of life. To do this, we will collect information from the medical records of around 4000 children treated in cancer services. We will also collect information from around 800 bereaved parents of children who received care in neonatal or paediatric intensive care units. We will use all this information to examine whether outcomes for children and families vary according to the different models of end of life care we identified in study 1, and assess the associated costs.
This application relates to workstream 3 part A only. WS1 requires HRA governance approval only as it involves staff survey of NHS staff. Further REC applications will be made for WS2 and WS3 part.REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
21/NW/0009
Date of REC Opinion
18 Jan 2021
REC opinion
Favourable Opinion