Description of the BRIGHTLIGHT cohort: the evaluation of teenage and young adult cancer services in England.
Adolescent
Adult
Anxiety Disorders
/ etiology
Biomedical Research
/ organization & administration
Delivery of Health Care
/ organization & administration
Depressive Disorder
/ etiology
Humans
Male
Neoplasms
/ psychology
Patient Selection
Prospective Studies
Quality of Life
State Medicine
Survival Analysis
Young Adult
brightlight
cancer
cohort
observational research
recruitment
teenagers and young adults
Journal
BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874
Informations de publication
Date de publication:
20 04 2019
20 04 2019
Historique:
entrez:
22
4
2019
pubmed:
22
4
2019
medline:
18
4
2020
Statut:
epublish
Résumé
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 (PTCs) 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. Prospective, longitudinal, observational study. Ninety-seven National Health Service hospitals in England. A total of 1114 participants were recruited and diagnosed between July 2012 and December 2014: 55% (n=618) were men, 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%). At diagnosis, median quality of life score was significantly lower than a published control threshold (69.7 points); 40% had borderline to severe anxiety, and 21% had borderline to severe depression. There was minimal variation in other patient-reported outcomes according to age, diagnosis or severity of illness. Survival was lower 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%). 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.
Identifiants
pubmed: 31005941
pii: bmjopen-2018-027797
doi: 10.1136/bmjopen-2018-027797
pmc: PMC6500338
doi:
Types de publication
Journal Article
Observational Study
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e027797Subventions
Organisme : Department of Health
ID : RP-PG-1209-10013
Pays : United Kingdom
Informations de copyright
© 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.
Déclaration de conflit d'intérêts
Competing interests: None declared.
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