Tom Grew NCRI CSG TYA CCG On behalf of the ‘Essence of Care’ research team

Teenagers and young adults (TYA) are caught between two worlds: childhood & adulthood Cancer services are traditionally organised around the needs of children and older adults Health policy in England advocates the need for age-appropriate care & TYA professional expertise (NICE, 2005) Increasing recognition of the value of patient experience and voice ‘No decision about me, without me‘

Work with TYA as co-researchers Explore the experiences of cancer care for TYA to inform a larger study Find out the importance of quality of life in relation to survival for young people Find out the importance of research on family and friends for young people

To engage & deliver the research streams of the TYA CSG to a wider audience To participate in he development of research with the TYA CSG To provide feedback on the research of the TYA CSG

5 Thinking back to the ‘place of care project’. How important do you think ‘quality of life’ is? (n=149)

6 No, research should just be about patients Yes, research should be about both I'm not sure Proportion of answers

The CCG conducted peer-to-peer interviews, which were digitally recorded Young people chose a ‘headline’ to reflect their story Headlines were expanded in group discussion using spider diagrams Group analysis with the CCG using thematic analysis of headlines & transcripts

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11 young people aged 14 – 25 years at diagnosis Life changing impact of a cancer diagnosis Provision of information The role of health professionals Choice about place of care Coping Peer support Psychological support Life after cancer “Cancer diagnosis made me grow up” “I’m more than my cancer” “If I’d had known… I would have travelled there” “Cancer nurse tells mum to get out!!!” “It’ll finish one day, treatment’s not forever” “Rehab[ilitation] buddies for cancer survivors” “Counselling for patients to cope” “The tumours out but what now?”

10 ‘…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

11 … I really enjoy working as a co-researcher; I think it was good for the workshop participants to see that young people were taking an active role alongside the professionals. It was also good on a personal level as it gives young people like me who had experience of cancer, the opportunity to be included in conducting research…’ Katie Brooman

‘...and like I got diagnosed with an STD whilst on treatment, …the doctor came in and discussed the treatment for genital herpes with my dad. Not good’ Trixxy diagnosed 18 ‘They don’t understand, do they?’ Shirley, diagnosed 14

Quality of life is as equally important as survival for TYA Young people think research should also be about the effect of cancer on family and friends Having young people work as co researchers is valuable and results in more honest disclosure The experience of TYA cancer care was varied & complex The eight themes which emerged were similar to research priorities identified by older adults- practical, social and emotional issues (Corner et al 2007). These results have informed the proposal for a five year longitudinal study to assess the value of teenage and young adult specialist cancer care.

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 Thank you to Teenage Cancer Trust for supporting Essence

The Find Your Sense of Tumour participants 2010 The Find Your Sense of Tumour Steering Committee The participants of the one day workshop Carol Irving and David Wright for their role in supporting the CCG Teenage Cancer Trust for funding the Essence of Care project