1. BRIGHTLIGHT: emerging results Dr Rachel Taylor on behalf of the BRIGHTLIGHT Team

2. Outline  Who’s taking part?  What are their experiences?  What next?

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

4. Aims  Examine the association between level of specialist care and outcomes  Examine geographic & socio-demographic inequalities  Evaluate cost & cost effectiveness of different levels of specialist care  Examine carer’s experience of different levels of care

5. Overview  Longitudinal, cohort study recruiting young people aged 13 – 24 years newly diagnosed with cancer  Target sample = 2,012 young people  Data collection by Ipsos MORI  Wave 1: 5 months after diagnosis Face-to-face interviews Wave 2 – 5: 12, 18, 24, 36 months after diagnosis Online (secure access) Telephone interview (CATI)

6. Who’s taking part?

7. Where are young people located?

8. By November 2013… N = 510

9. Age * *10 – 14 years

10. Diagnoses

11. What are their experiences?

12. 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 Data collected in 246 young people at wave 1

13. Presenting symptoms

14. Time between noticing symptom & seeking help

15. Number of times visiting professionals before diagnosis is made

16. How were young people told they had cancer?

17. What about the ‘Other’?  “Overheard specialist in corridor talking to someone presumably a nurse about me”  “Overheard consultant telling my parents as I came round from surgery”

18. What next?  Recruitment is suboptimal  Currently, analysis according to place of care not appropriate  Working with HCP & YP to identify strategies to increase accrual  Able to make meaningful conclusions  Progress the development of TYA cancer care in England [& beyond]

19. Conclusion  Currently the cohort has: Lower proportion of young teens Under representation of some tumour types (brain, melanoma, carcinoma)  Young people reside throughout the UK; Some regions have lower representation than others  Without an increase in recruitment, no meaningful analysis will be possible

20. Remember… Young person’s consent is not set in stone Young people are consenting to have the opportunity to take part If they consent they can later opt out If the don’t consent, they cannot opt in

21. “At the end of the day I know they are treating me and they are trying to help me get better but at the end of the day you know how you’re feeling inside. Ok, you might not look it but you know. I’ve had days when I’ve looked awful but I feel good on the inside and I’ve been able to talk to people for a while… it would make me feel like I’m more important, like I’m not just a patient, I’m actually a person…”

22. Thank you for your time This presentation presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209- 10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Email: brightlight@uclh.nhs.ukbrightlight@uclh.nhs.uk Website: www.brightlightstudy.comwww.brightlightstudy.com Phone:0741 555 7668