brightlight: emerging results dr rachel taylor on behalf of the brightlight team

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: brightlight@uclh.nhs.uk

Website: www.brightlightstudy.com

Phone: 0741 555 7668