Dr Rachel Taylor University College London & London South Bank University On behalf of the ‘Essence of Care’ research team

Health policy in England recognises the needs of teenagers & young adults (TYA) with cancer (NICE 2005) Key recommendations reflect the age specific needs and recommend unhindered access to age- appropriate facilities Recommendations are made in the absence of a definition of what age appropriate facilities are Furthermore, little research exists about TYA preferences of key features of an age-appropriate environment

To identify the priorities for a specialist TYA cancer unit To invite TYA who have experienced cancer to work as co-researchers Design: mixed methods with data generated from an interactive workshop & a survey

Recruitment through Teenage Cancer Trust Facebook page, Jimmyteens.tv and participants of Find Your Sense of Tumour (FYSOT) core characteristics of specialist TYA cancer care identified from the literature Two groups: ranked the cards through consensus onto a pyramid Spare cards to substitute other important features for the pre-printed cards Observer notes of the discussions

Young people who attended FYSOT were given a self report version of the cards & pyramid Completed cards were returned to the NCRI TYA Core Consumer Group Analysis: Rank score according to position in the pyramid Rank score divided by the sample size (Zebrack et al 2007)

Workshop: 11 young people aged 14 – 25 at time of diagnosis Current age 16 – 29 years 5 had experience of being on a TYA unit Survey: 64 responses; aged 13 – 24 at time of diagnosis Variety of environment experiences

1.Dedicated unit (‘we are treated like adults but we get the privilege's and time that other children do’) 2.Contact with peers 3.Somewhere to be alone 4.Somewhere to go other than bed 5.Facilities for normal adolescent pursuits 6.Area where inpatient can meet outpatient 7.Not being on open wards 8.Access to information 9.Access to computers (& the internet) 10.Access to expertise (the MDT)

Wide variation in young people’s priorities While the physical unit was rated #1, workshop discussion concluded the priority was not décor but the quality and ethos of care Involving young people in the development of specialist TYA services is an important step towards improving the patient experience

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

We would like to thank Teenage Cancer Trust for funding the ‘Essence of Care’ project David Wright & Carol Irving for their support with the CCG Participants & Steering Committee of ‘Find Your Sense of Tumour’