BRIGHTLIGHT The 2012 TYA cancer cohort Study

Professor Jeremy WhelanProfessor of Cancer Medicine and Consultant Oncologist

Dr Lorna FernNCRI Teenage and Young Adult Clinical Studies Group

Research & Development Co-ordinatorDr Rachel Taylor

Senior Research Manager

The BRIGHTLIGHT STUDYThe 2012 TYA Cancer Cohort Study

UCLH: Dr Jeremy Whelan (CI) Susie Pearce Martin LernerUCL: Dr Julie Barber Professor Steve Morris Professor Rosalind Raine Dr Rachel TaylorUniversity of Leeds: Dr Richard FeltbowerSt James’ University Hospital Dr Dan Stark

Cancer Research UK Dr Lorna Fern GOSH/LSBU Professor Faith Gibson NCAT Louise HookerNWCIS Dr Tony Moran Dr Catherine O’HaraNCRI CSG TYA CCG: Hannah Millington

Cancer in young people

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’

TYA principal treatment centres in England

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

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?

Essence of Care: Phase I

Phase 1Commenced J une 2009

Understanding TYA cancer services

Methodological issues related to Phase 2

Review of longitudinal & panel surveys

in England

Management & Organisation of Phase 2

Interviews with

commissioners & documentary

analysis

Non-participant observation & interviews

with TYA & HP

Workshops with

YP & HP

Literature reviews of TYA cancer

services, outcomes & measures

Interviews with

young people

Evaluation of NHS datasets

& registries

Phase 1Commenced J une 2009

Understanding TYA cancer services

Methodological issues related to Phase 2

Review of longitudinal & panel surveys

in England

Management & Organisation of Phase 2

Interviews with

commissioners & documentary

analysis

Non-participant observation & interviews

with TYA & HP

Workshops with

YP & HP

Literature reviews of TYA cancer

services, outcomes & measures

Interviews with

young people

Evaluation of NHS datasets

& registries

Who

WhereWhat

WHO looks after young people?

WHERE young people are cared for?

WHAT are young people’s experiences of cancer care?

We then asked young people to think of a headline…

We grouped similar headlines We made spider diagrams through group discussion

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

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

73.4%

11.9%

10.5%

4.2%

0 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80

Survival and quality of life are

equally important

Quality of life is more is more

important than survival

Survival is the only

important thing

Quality of life is less

important

Proportion of answers (%)

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)

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 20131

1 recruitment period extends to December 2013 or until n = 2,012

Aims

Examine the association of level of care to outcome

Examine geographic & socio-demographic inequalities

Evaluate cost & cost effectiveness of different levels of care

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

Data collection from young people

Young people will complete three documents:

1. BRIGHTLIGHT Survey2. BRIGHTLIGHT Cost of Care Questionnaire3. BRIGHTLIGHT Cost Record

BRIGHTLIGHT Survey

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

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)

Cost of Care Questionnaire

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

Workstream 4

To formulate the case for change informed by data collected in Workstreams 1, 2 & 3

To develop pilot intervention studies

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

Thank you for your time

Email: rtaylor13@nhs.net (research)

lorna.fern@cancer.org.uk (PPI)

Website: www.brightlightstudy.com

Phone: 0741 555 7668