Evaluation of specialist cancer services for teenagers and young adults in England: interpreting BRIGHTLIGHT study results through the lens of young people with cancer.

BACKGROUND

BRIGHTLIGHT was the first national evaluation of teenage and young adult (TYA) cancer services in England. BRIGHTLIGHT evaluated care for TYA aged 13 to 24 years at diagnosis and comprised six interlinked studies. Young people have been involved in BRIGHTLIGHT design, operational troubleshooting and dissemination. Divergent conclusions emerged from the programme, which healthcare professionals could not explain. We sought to gather young people's interpretation of the results based on their lived experience of cancer.

METHODS

Seven members of the BRIGHTLIGHT Young Advisory Panel (YAP) participated in a one-day workshop and two members acted as co-researchers. An overview of the BRIGHTLIGHT studies and key results were presented. To facilitate interpretation an artist illustrated the results in real-time. A focus group style discussion followed the presentation and was also illustrated.

RESULTS

The YAP made some key interpretations of the results not identified by researchers including the length of follow-up (3-years was not long enough) and how specialist care had been defined (using number of admissions rather than duration of hospitalisation). They explained the higher healthcare costs in those receiving care in more than one hospital, could be due to duplication of tests/scans. The YAP also identified that the results did not relay the importance of the diagnostic experience, which also incurred costs to TYA/families.

CONCLUSIONS

Patient experience adds further interpretation to complex study results beyond what is visible to healthcare professionals. The YAP added further insight to results and contributed to the formulation of the conclusion for the BRIGHTLIGHT programme grant.