Development of a patient- reported outcome measure for TYA with cancer: the BRIGHTLIGHT survey Dr Rachel Taylor on behalf of the BRIGHTLIGHT team

Introduction Specialist services for TYA with cancer are defined in National Health Service guidance However, the benefits of these services are not well defined BRIGHTLIGHT is a national evaluation of TYA cancer services

Patient-reported outcome measures Central to evaluating quality of health care Limited number validated for the TYA age range  Traditionally measures are for children ( 18 years) Uncertainty over the extent to which validated measures reflect experience Most have inadequate conceptual basis

Aim To develop an outcome measure, the BRIGHTLIGHT survey, for use with young people with cancer that accurately reflects their experience Objectives:  Develop the conceptual and theoretical basis  Identify core domains and associated items  Validate the survey and methods of administration

Developing the theoretical basis Understand the patient lived experience Conceptual model of TYA cancer experience New evidence: workshop with young people Existing evidence: systematic review & meta-synthesis

Meta-synthesis Psychological function Importance of peers Experience of healthcare Importance of support Impact of symptoms Striving for normality Impact of diagnosis Positive experiences Financial consequences

Workshop results (Grew TYAC 2010) ‘Cancer diagnosis made me grow up’: Life changing impact of diagnosis ‘I’m more than my cancer’: Provision of information ‘If I’d had know… I would have travelled there’: Place of care ‘Cancer nurse tells mum to get out!!!’: Role of health professionals ‘It’ll finish one day, treatment’s not forever’: Coping ‘Rehab[ilitation] buddies for cancer survivors’: Peer support ‘Counselling for patients to cope’: Psychological support ‘The tumour’s out but what now?’: Life after cancer

Conceptual model

Theoretical basis Conceptual model relates to a number of theories:  Quality of life  Shifting perspectives model  Developmental theory  Adjustment theory  Biographical disruption

Constructing the survey Conceptual model formed the basis for the 12 core domains Items (questions) within the domains generated from:  Young people’s experiences  Existing questionnaires  Health professional knowledge

Validation Health professional review  Content validity index  Whole survey  Selected sections Young person review currently underway  Focus groups  Cognitive interviews

Summary Theoretical basis & involvement of young people throughout development ensures the BRIGHTLIGHT survey accurately reflects young people’s experience of cancer [care] Change in provision of care will reflect young people’s needs not just health care providers Detailed development will enable the survey to be a resource for the whole TYA community

Thanks TYA teams in Birmingham, Leeds, Manchester and London Pan Birmingham CRN TYAC Teenage Cancer Trust & FYSOT

The BRIGHTLIGHT team UCLH: Dr 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

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 authors and not necessarily those of the NHS, the NIHR or the Department of Health. The BRIGHTLIGHT Team acknowledges the support of the NIHR, through the Cancer Research Network