Developing a symptom list for children with cancer
Research type
Research Study
Full title
Pain and symptoms in children with advanced cancer: a longitudinal study to develop a comprehensive symptom inventory
IRAS ID
157274
Contact name
Lucy Coombes
Contact email
Sponsor organisation
Royal Marsden NHS Foundation Trust
Duration of Study in the UK
1 years, 6 months, 0 days
Research summary
Childhood cancer is the second major cause of death for children, outside of the new born period. About 250 children die of cancer in the UK every year. There is evidence that towards the end of life children experience multiple symptoms. These symptoms are not always adequately identified, let alone managed. There are currently no tools available to capture and assess all symptoms within this population. It is important that a symptom assessment tool is developed for use in the clinical setting. The ideal when assessing symptoms should be child self-report. However, many children are too unwell to self-complete such an assessment so a tool that can be used by both parent/proxy and the child is required.
This study is a longitudinal symptom study which aims to begin to address this important gap in knowledge by developing a comprehensive inventory of symptoms experienced by children and young people (CYPs) under a specialist palliative care service. CYPs, their parent and nurse will be asked to complete a short symptom survey which includes open questions at the end asking whether the CYP has experienced any symptoms not already asked about. The study should take a maximum of 20 minutes to complete in a location of the CYP/family’s choice. Participants will be asked to complete the survey between once a month to once every 1-2 weeks for a total of four months. After four months participants will be giving the option of continuing on the study if they wish to otherwise data collection will cease.
All CYPs referred to the specialist symptom and palliative care team at the Royal Marsden Hospital will be eligible to participate. The CYPs and their families may benefit from this research as symptoms that may have been previously undisclosed can be detected and addressed by the team.
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
15/LO/2092
Date of REC Opinion
13 Jan 2016
REC opinion
Further Information Favourable Opinion