Post on 21-Jan-2016
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