Young Survivors of Cancer
Research type
Research Study
Full title
Young Survivors of Cancer: Phase I study to determine the item sets for child, adolescent, and young adult cancer survivors
IRAS ID
328910
Contact name
Anne-Sophie Darlington
Contact email
Sponsor organisation
University of Southampton
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
This study addresses the specific Health-Related Quality of Life (HRQOL) concerns facing young survivors of cancer. The aim of the study is to produce a list of issues for young survivors of cancer looking at differences and similarities in survivors according to age at diagnosis and current age at study enrolment. A total of 160 young people diagnosed and successfully treated (at least 12 months earlier) as a child (childhood cancer survivor:CCS) or as an adolescent or young adult (childhood cancer survivor: AYACS) and 55 health care professionals (HCP) will be interviewed. The first part of the study is exploratory and asks HCPs to identify the issues experienced by young survivors of cancer they care for. Young survivors of cancer are also invited to share their experiences. A list of issues will then be written which will be informed by the HCP and young survivor interviews as well as existing research. The second part of the study involves a separate group of HCPS and young survivors reviewing this list of issues in terms of relevance (whether an issue is something which is likely to be experienced by young survivors) and importance (the extent to which this issue is troublesome and should be given attention to). The outcome of the study will be a set of issues as well as recommendations for the best way of measuring the HRQoL concerns of young people who have had cancer as a child or adolescent and young adult.
REC name
North of Scotland Research Ethics Committee 1
REC reference
23/NS/0092
Date of REC Opinion
3 Sep 2023
REC opinion
Favourable Opinion