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Description of the BRIGHTLIGHT Cohort: the evaluation of teenagers and young adult cancer services in England

Taylor, Rachel, Fern, Lorna, Barber, Julie, Alvarez Galvez, Javier, Morris, Stephen, Feltbower, Richard, Hooker, Louise, McCabe, Martin G, Gibson, Faith, Raine, Rosalind , Stark, Dan and Whelan, Jeremy (2019) Description of the BRIGHTLIGHT Cohort: the evaluation of teenagers and young adult cancer services in England BMJ Open.

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Abstract

Objective: International recognition of the unique needs of young people with cancer is growing. Many countries have developed specialist age-appropriate cancer services believing them to be of value. In England, 13 specialist Principal Treatment Centres (PTC) deliver cancer care to young people. Despite this expansion of specialist care, systematic investigation of associated outcomes and costs has to date, been lacking. The aim of this paper is to describe recruitment and baseline characteristics of the BRIGHTLIGHT cohort, and the development of the bespoke measures of levels of care and disease severity, which will inform the evaluation of cancer services in England.

Design: Prospective, longitudinal, observational study.

Setting: Ninety-seven NHS hospitals in England.

Participants: A total of 1,114 participants were recruited diagnosed between July 2012 and December 2014: 55% (n=618) male, mean age was 20.1 years (SD=3.3), most (86%) were white and most common diagnoses were lymphoma (31%), germ cell tumour (19%) and leukaemia (13%).

Results: At diagnosis, median quality of life score was significantly lower than a published control threshold (69.7 points); 40% had borderline-severe anxiety, and 21% had borderlinesevere depression. There was minimal variation in other patient-reported outcomes according to age, diagnosis or severity of illness. Survival was significantly worse in the Cohort than for young people diagnosed during the same period who were not recruited (cumulative survival probability 4 years after diagnosis: 88% vs. 92%).

Conclusions: Data collection was completed in March 2018. Longitudinal comparisons will determine outcomes and costs associated with access/exposure to PTCs. Findings will inform international intervention and policy initiatives to improve outcomes for young people with cancer.

Item Type: Article
Divisions : Faculty of Health and Medical Sciences > School of Health Sciences
Authors :
NameEmailORCID
Taylor, Rachel
Fern, Lorna
Barber, Julie
Alvarez Galvez, Javier
Morris, Stephen
Feltbower, Richard
Hooker, Louise
McCabe, Martin G
Gibson, Faithf.gibson@surrey.ac.uk
Raine, Rosalind
Stark, Dan
Whelan, Jeremy
Date : 2019
Copyright Disclaimer : © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
Uncontrolled Keywords : Recruitment; BRIGHTLIGHT; Teenagers and Young Adults; Cancer, Observational research; Cohort; Outcome; Quality of life; Experience
Related URLs :
Depositing User : Clive Harris
Date Deposited : 05 Mar 2019 13:45
Last Modified : 05 Mar 2019 13:45
URI: http://epubs.surrey.ac.uk/id/eprint/850669

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