Pathways to Diagnosis in Teenagers and Young Adults with Cancer

• Research type

  Research Study

• Full title

  Pathways to Diagnosis in Teenagers and Young Adults with Cancer

• IRAS ID

  157940

• Contact name

  Daniel Stark

• Contact email

  D.P.Stark@leeds.ac.uk

• Sponsor organisation

  University of Leeds

• Research summary

  Studies in Europe and USA suggest that when young people aged from 13 to 29 develop cancer, they may experience a longer time until diagnosis and treatment than do younger children or older adults. However, the methods and designs used in these studies do not allow us to be certain whether and where any delays in diagnosis may be occurring. Delay in diagnosis continues to provide an explanation for some of the poorer outcomes observed in this population.
  Possible reasons for delay in diagnosis include whether young people:
  i. are less likely to identify symptoms as requiring medical attention
  ii. may be less likely to make use of medical services
  iii. may be less clear in explaining their symptoms
  iv. may be less likely to be referred for investigation when reporting symptoms
  v. may fall in between paediatric and adult services once referred for tests, diagnosis and treatment.

  We have been building a European Network for Cancer Research in Children and Adolescents (ENCCA), which has increased from 15 to over 200 members from 19 EU nations, and has access to over 10,000 individuals with TYA cancer as part of their work. Through this network TYA patients in centres across Europe will be accessed.

  Study Objectives
  1. To pilot collaborative working and data collection from within the European TYA community
  2. To identify possible delays in the diagnostic work up of cancer in the TYA population
  
  This study will collect data on the pathways taken by TYAs from first symptoms through to diagnosis. The study involves three streams of participant reported data collection from: patients; specialist clinicians; and GPs. Questionnaires will be completed online by each of these three groups. The data from these three streams will then be analysed to map the diagnostic pathways for TYAs, identify any delays and the potential reasons for these delays.

• REC name

  North West - Haydock Research Ethics Committee

• REC reference

  14/NW/1216

• Date of REC Opinion

  28 Aug 2014

• REC opinion

  Further Information Favourable Opinion