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NIHR RP-PG-1209-10013
Steps in the development of a patient-reported outcome measure for teenage
and young adults with cancer: The BRIGHTLIGHT survey
Dr Rachel Taylor on behalf of the BRIGHTLIGHT Team
Cancer Clinical Trials Unit, University College London Hospitals NHS Foundation Trust
NIHR RP-PG-1209-10013
BRIGHTLIGHT
BRIGHTLIGHT is an NIHR funded programme grant (ref: RP-PG-1209-10013)
Aim is to evaluate teenage and young adult cancer services in England through a series of inter-connected studies
Central to BRIGHTLIGHT is the 2012 TYA Cancer Cohort Study• Evaluation of care according to patient experience
NIHR RP-PG-1209-10013
BRIGHTLIGHT participants
BRIGHTLIGHT will include 2,012 young people Qualitative methods would be prohibitively
resource intensiveBRIGHTLIGHT Survey
Longitudinal study over 3-years therefore essential the survey reflects what is important to young people
NIHR RP-PG-1209-10013
BRIGHTLIGHT Survey Aim:
To develop a patient experience survey that is a an accurate reflection of teenage and young adults experience of cancer
Methods: Multi-stage process using existing literature and
primary data Presented as a linear process however much
was conducted concurrently
Step 1: literature review
Systematic search of published qualitative studies on TYA cancer experience
Meta-synthesis of 17 publications (15 studies) Nine common themes Conceptual model of TYA cancer care
(Taylor et al. IJNS in press)
NIHR RP-PG-1209-10013
But…
Long-term emotional consequences Aspects of place of care young people value
most Expectations of different services and
professionals Impact on school – what about higher
education/careers/relationships Symptom experiences
NIHR RP-PG-1209-10013
Step 2: workshop with young people
NIHR RP-PG-1209-10013
Conceptual framework
NIHR RP-PG-1209-10013
Step 3: Identifying questions
Literature searches Young people’s experiences (Taylor et al. IJNS in press)
• Other non-published & ongoing studies Quantitative literature
• What questionnaires have been used with TYA?• What questionnaires are validated for TYA?
NIHR RP-PG-1209-10013
Conceptual framework
NIHR RP-PG-1209-10013
Patient-experience questions
Physical well-being
Symptom to diagnosisDiagnosis
Place of care Health professionals
CommunicationTreatment
Clinical trials
Social well-being
EducationEmployment
Social support
Emotional well-being
Illness perceptionEmotional state
NIHR RP-PG-1209-10013
Step 4: Validation
1. Expert health professional review Including specific expertise in key areas, e.g.
fertility, delay in diagnosis, patient choice
2. Expert patient review Cognitive interviews Focus groups
NIHR RP-PG-1209-10013
Cognitive interview participants
Recruited through Teenage Cancer Trust Facebook page
21 young people aged 14 – 24 years Range of diagnoses Both on & off treatment NO knowledge of BRIGHTLIGHT Offered a £30 high street shopping voucher
NIHR RP-PG-1209-10013
Method
Phase 1 (n = 8) Phase 2 (n = 13) Telephone interviews by Ipsos MORI
researcher• 40 – 60 minutes
Written consent from parents from the BRIGHTLIGHT team for young people <16 years
NIHR RP-PG-1209-10013
Results
Changes to the quality of life questionnaire• Author approval
Adding Qs Changes to the wording of Qs Amending routing Adding response codes Adding interviewer instructions/guidance
(Ipsos MORI 2012)
NIHR RP-PG-1209-10013
Summary
Developed a robust theoretical basis in which to base the survey
Survey was developed with young people, so better reflects their experience
Began developing a collaborative partnership with young people Form the basis of the Young Person’s Reference
Group
Conclusion
“I like the idea that it’s designed by young people; I worked for the university here for a while and we did a study there looking at academic feedback when we had it designed and run by young people and it was completely revolutionary to the university and I’m sure it’s just as revolutionary in the healthcare world.”
Young man, aged 22
The BRIGHTLIGHT STUDYThe 2012 TYA Cancer Cohort Study
UCLH: Professor Jeremy Whelan (CI) Dr Rachel Taylor Susie Pearce Martin LernerUCL: Dr Julie Barber Professor Steve Morris Professor Rosalind RaineUniversity 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
AcknowledgementsSpecial thanks to the following:
Sue Morgan MBE & the team in LeedsProfessor Allan PaceyAlexandra BrownsdonTeenage Cancer Trust
CLIC SargentPan Birmingham Cancer Research Network & the TYA teams at University
Hospital Birmingham, Birmingham Children’s Hospital & the Royal Orthopaedic Hospital
The TYA team at Addenbrooks HospitalThe TYA team at University Hospitals of Southampton
The TYA team at Guy’s and St Thomas’ Hospital
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