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BRIGHTLIGHT:emerging results
Dr Rachel Taylor on behalf of the BRIGHTLIGHT Team
Outline
Who’s taking part?
What are their experiences?
What next?
Do specialist cancer services for teenagers and young adults add value?
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
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)
Who’s taking part?
Where are young people located?
By November 2013…
Male55%
Female44%
Unknown1%
N = 510
Age
13-14 years 15-19 years 20-25 years0
10
20
30
40
50
60
70
BRIGHTLIGHT CRUK
Perc
enta
ge
*
*10 – 14 years
Diagnoses
What are their experiences?
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
Presenting symptoms
Lump or swelling
Extrememe tiredness
Pain for no apparent reason
Weight loss without dieting
Swollen/enlarged lymph nodes
0 10 20 30 40 50 60
Proportion
Time between noticing symptom & seeking help
Less than a month 1 - 3 months 3 - 6 months More than 6 months
0
10
20
30
40
50
60
70
80
Proportion
Number of times visiting professionals before diagnosis is made
GP A&E Hospital Walk-in-centre0
5
10
15
20
25
30
One visitTwo visitsThree visits>Three visitsPe
rcen
tage
How were young people told they had cancer?
94%
5% 1%
Face-2-faceTelephoneOther
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”
What next?
Recruitment is suboptimal Currently, analysis according to place of care
not appropriate Working with HCP & YP to identify strategies
to increase accrualAble to make meaningful conclusionsProgress the development of TYA cancer care
in England [& beyond]
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
Remember…
Young person’s consent is not set in stoneYoung people are consenting to have the
opportunity to take partIf they consent they can later opt out
If the don’t consent, they cannot opt in
“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…”
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: [email protected]
Website: www.brightlightstudy.com
Phone: 0741 555 7668
