Title: Do Specialist Cancer Services for Teenagers and Young Adults (TYA) Add Value?
Funder: Department of Health and Social Care

Abstract: BACKGROUND Current national health policy identifies teenagers and young adults with cancer aged 13-24 yrs (TYA; see glossary, Annex 4) as having needs distinguishable from those of children or older adults and directs that their needs are addressed by specifically configured components of cancer services. This research programme addresses the lack of adequate identification of both the most worthwhile components of specialist services for TYA with cancer and any improvements in outcome that may be associated with such services, thus limiting their further development. RESEARCH PLANS The programme will examine the key elements of specialist TYA cancer care and explore their association with patient outcomes. In addition we will evaluate the cost and cost effectiveness of specialist TYA cancer care. Over an 18 month period commencing January 2012, we will enrol a cohort of 2000 young people in England within 3 months of a new cancer diagnosis. Mixed research methods will be used to a) describe specialist TYA cancer care through validation of a bespoke scale which categorises 3 levels of specialist service delivery b) undertake definition of the skills and culture which characterise specialist care c) assess variations in clinical and patient reported outcomes in relation to experience of specialist care d) determine cost effectiveness RESEARCH TEAM All our experienced multidisciplinary research team, which includes patient and public involvement (PPI) partners, have co-operated together on the extensive preliminary work which supports this proposal. Half of the team have prolonged experience of working together as members of the NCRI TYA CSG. PROGRAMME MANAGEMENT All TYA with cancer will be identified within 8 weeks of diagnosis through cancer waiting time target data accessed by NWCIS. The study co-ordinating office will be alerted of all new diagnoses and liaise with the local National Cancer Research Network (NCRN). NCRN staff will make first contact and gain consent/assent. Interviews with TYA will be conducted by an experienced researcher from a commercial research company (CRC). Data required from case records will be obtained by NCRN staff. National cancer intelligence data including HES and survival times will be available from NWCIS accessing the National Cancer Data Repository (NCDR). RESEARCH ENVIRONMENT The study will be based at the NIHR UCLH/UCL CBRC and links closely with partners in UCL, University of Leeds and NWCIS, all active research bodies in this field. The study links national bodies (NCRN, NCIN, NCRI TYA CSG) with the professional community working in treating centres. ANTICIPATED OUTPUTS The study will define the most valuable elements of specialist care for patients, the constituent parts of 'age-appropriate' care and importantly if improved outcomes are attributable to specialist care. This information may inform TYA when making choices about place of care in the future. Benefits to training and education for TYA specialists will be derived. Evidence will support and influence the development of policy and the commissioning of future services. Information on best practice will direct future cancer measures and peer review of cancer services. We aim to demonstrate the value gained from novel analyses of existing datasets in illuminating service effectiveness. As the first cohort study of TYA cancer, in a field where applied research studies are scarce, a significant contribution to the national and international community is anticipated. PPI We have engaged in a partnership with the NCRI TYA CCG. The CCG consists of five young people diagnosed with cancer when aged 18-25 years. The CCG have acted as advisors and co-researchers in the pilot work. In the developmental stage of the research, the CCG designed invitations to a patient workshop; co-facilitated workshops; conducted peer interviews; reviewed transcripts; assisted with data analysis and will be co-authors on subsequent publications. The CCG will continue with these advisory and co-researcher roles, in addition to their pivotal role in assessing the acceptability of methods, development of questionnaires and interview schedules, designing information sheets, and advising on recruitment/retention issues. The CCG will disseminate their work at an annual patient conference with over 300 TYA, in addition to information on websites which TYA use and professional conferences. ETHICAL IMPLICATIONS The programme will be approved by NIGB and NRES and conducted with complete ethical rigour and respect for the young people who participate. JUSTIFICATION OF COSTS The grant will support a core study team for recruitment and data management; collection of ethnographic and other data defining specialist care and the analyses for main study endpoints and economics. We will use a CRC to ensure data collection can be achieved by trained staff working in defined governance structures and with full national and geographic access.????

Lay abstract: BACKGROUND INFORMATION Every year about 2000 teenagers and young adults aged 13-24 yrs (TYA) in England are diagnosed with cancer. This disease causes more deaths in TYA than anything else except accidents. There is evidence that the results of cancer treatment for TYA are not good enough and that TYA are not well provided for by current cancer services. In 2005, the National Institute of Health and Clinical Excellence (NICE) issued ‘Improving Outcomes Guidance for Children and Young People with Cancer’[1]. It states that all young people should have access to specialist TYA cancer services. Some but not all parts of England have now established these services, so the care TYA receive varies from place to place. Despite this recommendation for specialist TYA services, there is no definition of ‘specialist care’ or its ‘core’ parts. Professionals and patients say ‘TYA specialist care’ is ‘better’ for TYA. But it is unknown how specialist services affect the success of treatment or if specialist services are cost effective for the NHS. WHAT ARE OUR RESEARCH QUESTIONS? 1. What are the most valuable parts of TYA specialist care? 2. How does specialist care affect the success of a young person’s treatment? 3. What costs are associated with specialist care? HOW WILL THIS BE DONE? All TYA who are diagnosed with cancer in England over an 18 month period will be invited to participate. We will conduct a survey with TYA within 3 months of diagnosis, 6 months later, and then annually for 3 years. We will also record where they were treated and which health professionals were involved in their care. We will also study the specialist services themselves to identify the most important elements and how much they cost. WHAT WILL BE MEASURED? No one single measurement can tell us how effective these services are. So we will measure quality of life (QL), wellbeing, progress in education and employment as well as details of the quality of treatment given and how long TYA live after a cancer diagnosis. Finally we will look at the costs of cancer both for young people and their families and for the NHS. WHAT BENEFITS WILL THERE BE TO THE NHS, PUBLIC AND PATIENTS? We will • demonstrate the value of specialist services for TYA • show which are the most important parts of specialist care and how they may be improved • help improve specialist training for TYA staff • understand about the cost of TYA cancer to patients and the NHS • Inform the planning of future services

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS