title: Changes in the patterns of care of central nervous system tumours among 16-24 year olds and the effect on survival in Yorkshire between 1990 and 2009.
abstract: OBJECTIVE
  There is a paucity of work documenting the influence of patterns of care on survival for teenagers and young adults with primary central nervous system tumours. Therefore, the aim of this study was to undertake a detailed assessment examining any changes in the patterns of care over time and how these related to survival outcomes for 16-24 year olds diagnosed with a primary central nervous system tumour between 1990 and 2009.
  
  
  METHODS
  We used high-quality data from one population-based cancer registry in Yorkshire, UK to describe primary central nervous system tumours in teenagers and young adults (16-24 years) diagnosed between 1990 and 2009. The Birch classification scheme was used to identify differences by tumour subgroup. Incidence, patterns of care and survival trends were described using Poisson and Cox regression.
  
  
  RESULTS
  There were 163 cases comprising 98 astrocytomas, 17 'other gliomas', 14 ependymomas, 11 medulloblastomas and 23 'other intracranial and intraspinal neoplasms' yielding an overall incidence of 18.1 million person-years. Care varied significantly over time and by principal treatment centre (Leeds 77%, Hull 23%), co-ordinating specialty (neurosurgery 53%, clinical oncology 22%, paediatrics 17%, other adult services 8%) and treatment received. Cox regression showed no significant difference in survival by age, gender, treatment centre, level of deprivation, year of diagnosis or co-ordinating specialty, but a significant difference by tumour grade and diagnostic group. Survival improved for all diagnostic groups except astrocytoma, although only the medulloblastoma group showed a significant change over time.
  
  
  CONCLUSIONS
  The lack of any significant improvement in survival over time in most diagnostic groups warrants further investigation and provides justification for a more collaborative regional approach to the care of central nervous system tumours, perhaps through the development of regional guidelines for this unique population. More detailed analysis of relapse patterns and prediagnostic symptoms would also be informative for this cohort.
authors.affiliation: York Teaching Hospital NHS Foundation Trust, York, UK. brian.nicholson@nhs.net
authors.forename: B D
authors.initials: BD
authors.lastname: Nicholson
authors.forename: S V
authors.initials: SV
authors.lastname: Picton
authors.forename: P
authors.initials: P
authors.lastname: Chumas
authors.forename: S
authors.initials: S
authors.lastname: Dixit
authors.forename: M
authors.initials: M
authors.lastname: van Laar
authors.forename: C
authors.initials: C
authors.lastname: Loughrey
authors.forename: G
authors.initials: G
authors.lastname: O'Reilly
authors.forename: D P
authors.initials: DP
authors.lastname: Stark
authors.forename: R G
authors.initials: RG
authors.lastname: Feltbower
mesh_terms: D000293:Adolescent; D000367:Age Factors; D016543:Central Nervous System Neoplasms / Q000453:epidemiology* / Q000473:pathology / Q000628:therapy*; D005260:Female; D006801:Humans; D015994:Incidence; D008297:Male; D010818:Practice Patterns, Physicians'; D016019:Survival Analysis; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult