Teenage and young adult (TYA) cancer services: who, where and what? Dr Rachel Taylor PhD Senior Research Associate, University College London and South Bank University Dr Lorna Fern PhD Research & Development Co-ordinator, National Cancer Research Institute’s Teenage & Young Adult Clinical Studies Group

Who Where What

WHO cares for young people? Aim A scoping exercise to define the skills of health professional involved in TYA cancer care Study design Multi-method:  Prospective data generated inductively in a workshop  Secondary analysis of data generated at the 2006 TYA Winter Education meeting

Methods Content analysis of literature to identify key competencies Ranked on a diamond through group consensus with the most important at the top and least at the bottom (Fallon et al. 2008) Analysis: Comparative narrative analysis of the workshop data combined with the thematic analysis of the TYAC data using mind mapping

WHERE are young people cared for? Aims: To identify the perceptions of young people with cancer and of professionals of the key components of a specialist TYA cancer unit Study design: Mixed method with data generated during workshops with health professionals and young people & a survey with young people

Methods 15 core characteristics of specialist TYA cancer care from the literature Ranked cards in the order of importance on a pyramid  Through group consensus in the workshop  Individual opinion in the survey Analysis through calculating a rank score

Results

Top priorities Young people Dedicated unit Contact with peers Provision for partners/parents to be resident Somewhere to go other than bed Facilities for normal pursuits Exposure to role models Health professionals Best chance of survival & best QOL Access to expertise (MDT) Access to computers/the internet Age appropriate equipment Contact with peers Service that just isn’t about medical treatment but addresses psychological needs

Summary Wide variation in young people’s priorities Disparity between young people and health professionals Young people’s views:  Driven by personal experience  Least disruption to ‘normality’ a priority Health professional’s views:  Tended to be service orientated  More likely to take a long-term view

WHAT are young people’s experiences of cancer care?

The Core Consumer Group: James Ashton Hannah Millington Katie Brooman Tom Grew Carol Starkey P Personal experience

Peer to peer interviews with young people about their experiences of cancer care…

We grouped similar headlines We made spider diagrams through group discussion We then asked young people to think of a headline…

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)

Is it useful to have to have young people working as co-researchers? ‘…Yes because you could relate to them [CCG] on a personal level and it did create a comfort zone which enabled you to talk easily about all aspects of you treatment and also the emotional side to it because you are safe in the knowledge that they [CCG] have experienced the same...’ [Workshop participant]

What sort of information do young people share between themselves? ‘like things like safe sex... My doctor spoke to me about my STD whilst one of my parents were in the room**’ Trixxy diagnosed 18

Is it useful for young people to work as co-researchers? ‘…I have also enjoyed the Essence of Care project, particularly interviewing other TYA – the unique connection between two TYA who can share a cancer experience can never be underestimated…’ Tom, CCG member

What this informed… Quality of life as important as survival ▫ Implication for primary outcome Eight key themes forms the basic framework for the BRIGHTLIGHT Survey Working with young people adds value to study 1 st round questionnaire of a Delphi survey ▫ Commencing Spring 2012 Towards a definition of TYA cancer care ▫ Checklist for evaluating services

Dr Lorna Fern Professor Faith Gibson Dr Catherine O’Hara Susie Pearce Dr Rachel Taylor Dr Jeremy Whelan NCRI CSG TYA CCG ▫ James Ashton ▫ Katie Brooman ▫ Tom Grew ▫ Hannah Millington ▫ Carol Starkey Essence of care research team

We would like to thank Teenage Cancer Trust for funding the ‘Essence of Care’ project Members of the NCRI TYA Core Consumer Group Participants & Steering Committee of ‘Find Your Sense of Tumour’ Acknowledgements