Teenage and young adult cancer in England - the patient journey and experience

Background: The Improving Outcomes Guidelines recommended treatment of teenage and young adult patients with cancer at designated principle treatment centres. Alongside age appropriate care, site specialist centres exist for several of the diagnostic groups commonly seen in these patients.
Objectives: This project aimed to produce a definition of specialist care for teenage and young adult (TYA) patients, describe the variation in care pathways nationally in England and to determine what effect the level of specialist care received has on patient outcomes.
Materials and methods: Patients aged between 15 and 24, diagnosed with cancer in England between 2001 and 2006 were identified and cancer registration and hospital episode statistics data were extracted for these cases. Patients were assigned a level of specialist care based on the proportion of their inpatient stay during treatment which was spent at a specialist centre. The variation in access to the specialist centres was assessed for each diagnostic group, as were the demographics of the patients receiving each level of specialist care. Outcomes were measured within the distinct diagnostic groups. Kaplan-Meier curves and Cox regression modelling were used to assess the impact of specialist care on survival.
Results: Variation in access to specialist care centres was seen in all diagnostic groups. The proportion of patients in each group who received specialist care also varied, with some diagnostic groups receiving very little care at specialist centres. The level and type of specialist care received was shown to affect survival in all groups. More specialist care was associated with a survival benefit in the case of leukaemia, central nervous system tumours and lymphoma, significantly so in the case of lymphoma.
Conclusions: The uptake of specialist care for teenage and young adult patients was variable across England and not all patients were seen to be receiving the care pattern associated with optimum outcomes.