1. BRIGHTLIGHT The 2012 TYA cancer cohort Study Professor Jeremy Whelan Professor of Cancer Medicine and Consultant Oncologist Dr Lorna Fern NCRI Teenage and Young Adult Clinical Studies Group Research & Development Co-ordinator Dr Rachel Taylor Senior Research Manager

2. The BRIGHTLIGHT STUDY The 2012 TYA Cancer Cohort Study UCLH:  Dr Jeremy Whelan (CI)  Susie Pearce  Martin Lerner UCL:  Dr Julie Barber  Professor Steve Morris  Professor Rosalind Raine  Dr Rachel Taylor University of Leeds:  Dr Richard Feltbower St James’ University Hospital  Dr Dan Stark Cancer Research UK  Dr Lorna Fern GOSH/LSBU  Professor Faith Gibson NCAT  Louise Hooker NWCIS  Dr Tony Moran  Dr Catherine O’Hara NCRI CSG TYA CCG:  Hannah Millington

3. Cancer in young people

5. TYA cancer services in England  2005 NICE Improving Outcome Guidance  <19 years referred to a principal treatment centre  19 – 24 years offered ‘unhindered access to age- appropriate care’

6. TYA principal treatment centres in England

7. Do specialist cancer services for teenagers and young adults add value?

8. Challenges  What study design?  Ideally randomised controlled trial, BUT Services are already in place Unethical to randomise to specialist care vs. not Variation in services across country  What sample?  Too much variability to be single centre  National cohort, BUT How do you identify ALL young people? How do you recruit ALL young people?  What outcomes?

9. Essence of Care: Phase I

10. Who Where What

11. WHO looks after young people?

12. WHERE young people are cared for?

13. WHAT are young people’s experiences of cancer care?

14. We then asked young people to think of a headline…  We grouped similar headlines  We made spider diagrams through group discussion

15. Life changing impact of diagnosis : ‘ Cancer diagnosis made me grow up ’ Provision of information: ‘ I’m more than my cancer’ Place of care: ‘ If I’d had known… I would have travelled there ’ Role of health professionals: ‘ Cancer nurse tells mum to get out!!!’ Coping: ‘ It’ll finish one day, treatment’s not forever’ Peer support: ‘ Rehab[ilitation] buddies for cancer survivors’ Psychological support : ‘ Counselling for patients to cope’ Life after cancer : ‘The tumour’s out but what now?’ Eight key themes emerged

16. Thinking back to the ‘place of care project’. How important do you think ‘quality of life’ is? (n=149)

18. Workstream 1: the description of specialist TYA cancer care  Explore the culture of care through non- participant observation, interviews and documents analysis  Identify the specialist competencies and added value of specialist health professionals through a Delphi survey  Validate a bespoke scale to categorise 3 levels of TYA care (TYA Cancer Specialism Scale)

19. Workstream 2 & 3: Longitudinal cohort study  Cohort study: a group of participants are recruited and followed up over time  CAPTURE is as important as RECRUITMENT  We need to account for EVERY young person diagnosed with cancer between July 2012 and July 2013 1 1 recruitment period extends to December 2013 or until n = 2,012

20. Aims  Examine the association of level of care to outcome  Examine geographic & socio-demographic inequalities  Evaluate cost & cost effectiveness of different levels of care

21. Inclusion & exclusion criteria  Inclusion criteria  Diagnosed with cancer between July 2012 and December 2013  Aged 13 – 24 at the time of diagnosis  Resident in England at the time of diagnosis  Exclusion criteria  Not capable of completing the survey  Does not consent or assent  Recurrence of previous cancer  Death is imminent  Receiving a custodial sentence at time of treatment

22. Data collection from young people  Young people will complete three documents: 1.BRIGHTLIGHT Survey 2.BRIGHTLIGHT Cost of Care Questionnaire 3.BRIGHTLIGHT Cost Record

23. BRIGHTLIGHT Survey

24. Physical well-being Symptom to diagnosis Diagnosis Place of care Health professionals Communication Treatment Clinical trials Social well-being Education Employment Social support Emotional well-being Illness perception Emotional state

25. Survey administration  Commercial partners: Ipsos MORI  Wave 1: 5 months after diagnosis  Face-to-face interviews (CAPI)  Maximum duration: 40 minutes  Wave 2 – 5: 8, 12, 24, 36 months after diagnosis  Online (secure access)  Telephone interview (CATI)

26. Cost of Care Questionnaire

27. Cost Record  Wave 1: complete weekly for 3 months  Wave 2: complete weekly for 4 months  Wave 3: complete monthly for a year

28. Workstream 4  To formulate the case for change informed by data collected in Workstreams 1, 2 & 3  To develop pilot intervention studies

29. Benefits? We will  Demonstrate the value of specialist services for TYA  Show which are the most important parts of specialist care and how they may be improved  Help improve specialist training for TYA staff  Understand about the cost of TYA cancer to patients and the NHS  Inform the planning of future services

31. Thank you for your time Email:rtaylor13@nhs.net (research)rtaylor13@nhs.net lorna.fern@cancer.org.uklorna.fern@cancer.org.uk (PPI) Website:www.brightlightstudy.comwww.brightlightstudy.com Phone:0741 555 7668