The NICE guidance published in 2005 specified young people aged 15-18 must be treated in specialist age-appropriate cancer units, and those aged 19-24 years should have ‘unhindered access’. This meant young people should be given a choice whether to go to one of the principal treatment centres (PTC) or a local hospital that has been assessed as delivering some level of age-appropriate care. It is not known whether all young people have this choice or if all those aged 15-18 have all their treatment in age-appropriate units. By calculating the amount of specialist care each young person has received it may be possible to see how much is needed for them to have better outcomes.
What were our aims?
The TYA Cancer Specialism Scale (TYA CSS) was a metric which was developed to quantify the amount of specialist age-appropriate care each young person has received. Specialist TYA cancer care in this study was defined as the amount of care received in a TYA PTC.
What did we do?
Hospital Episode Statistics (HES) are electronic NHS information that are collected routinely from everyone using NHS services. It is a record of NHS hospital admitted patient care (APC), outpatient and accident & emergency attendance. HES data for all young people who consented to BRIGHTLIGHT have been used from the time they were diagnosed with cancer for the first 6 and 12 months after diagnosis. We have calculated how many APCs were in a PTC or in another hospital. Young people are then allocated to one of the levels of the TYA CSS: all, some or no care in a specialist hospital.
What were our findings?
The development of the scale is reported as appendix 2 in the cohort paper . The distribution of admissions supported the 3-levels of care: ALL-TYA-PTC, SOME-TYA-PTC or NO-TYA-PTC. Participants in the Cohort were allocated to one of these levels based on where they were treated in the first 6 and 12 months after diagnosis.
For more details regarding the development of the TYA specialism scale, please refer to ‘Supplementary file 2’ of our BMJ open paper, accessible via this link.