NIHR RP-PG 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 BRIGHTLIGHT  BRIGHTLIGHT is an NIHR funded programme grant (ref: RP-PG )  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 BRIGHTLIGHT participants  BRIGHTLIGHT will include 2,012 young people  Qualitative methods would be prohibitively resource intensive  BRIGHTLIGHT Survey  Longitudinal study over 3-years therefore essential the survey reflects what is important to young people

NIHR RP-PG 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 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 Step 2: workshop with young people

NIHR RP-PG Conceptual framework

NIHR RP-PG 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 Conceptual framework

NIHR RP-PG Patient-experience questions 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

NIHR RP-PG 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 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 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 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 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 STUDY The 2012 TYA Cancer Cohort Study UCLH:  Professor Jeremy Whelan (CI)  Dr Rachel Taylor  Susie Pearce  Martin Lerner UCL:  Dr Julie Barber  Professor Steve Morris  Professor Rosalind Raine University of Leeds:  Dr Richard Feltbower St James’ University Hospital  Dr Dan Stark Cancer Research UK  Dr Lorna Fern GOSH/LSBU  Professor Faith Gibson NCAT  Louise Hooker NWCIS  Dr Tony Moran  Dr Catherine O’Hara NCRI CSG TYA CCG:  Hannah Millington

Acknowledgements Special thanks to the following: Sue Morgan MBE & the team in Leeds Professor Allan Pacey Alexandra Brownsdon Teenage Cancer Trust CLIC Sargent Pan Birmingham Cancer Research Network & the TYA teams at University Hospital Birmingham, Birmingham Children’s Hospital & the Royal Orthopaedic Hospital The TYA team at Addenbrooks Hospital The 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 ). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Website: Phone: