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.