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: rtaylor13@nhs.net

Website: www.brightlightstudy.com

Phone: 0741 555 7668