Two thousand teenagers and young adults with cancer will be tracked over 18 months to see whether specialist services improve their survival and quality of life. Current NHS policy says 13-to-24-year-olds need care tailored to their age, but no one has systematically tested whether dedicated teenage cancer units, specialist nurses, or age-appropriate psychosocial support actually produce better outcomes than standard adult or paediatric care. This leaves commissioners unsure which components of specialist services are worth funding. The research will categorise each patient’s care into one of three levels of specialisation, then compare clinical outcomes, patient-reported wellbeing, and cost-effectiveness across those levels. If specialist care proves measurably better, the findings will give young people evidence to choose where they are treated and give NHS commissioners a clear case for investing in dedicated services. If it does not, the results could redirect resources toward other priorities. This is the first cohort study of its kind in teenage and young adult cancer. The team includes young survivors as co-researchers, ensuring the questions asked reflect what patients actually value.
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BACKGROUNDCurrent 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 PLANSThe 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 toa) describe specialist TYA cancer care through validation of a bespoke scale which categorises 3 levels of specialist service deliveryb) undertake definition of the skills and culture which characterise specialist carec) assess variations in clinical and patient reported outcomes in relation to experience of specialist cared) determine cost effectivenessRESEARCH TEAMAll 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 MANAGEMENTAll 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 ENVIRONMENTThe 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 OUTPUTSThe 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.PPIWe 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
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