Title: What clinical outcomes are associated with the ‘joint care’ proposed by NHS England for Teenagers and Young Adults with cancer BRIGHTLIGHT-2021
Funder: Department of Health and Social Care

Abstract: Background In England, approximately 2,100 new cancers occur in teenagers and young adults (TYA), aged 16-24 annually. Specialist services provide care in thirteen Principal Treatment Centres (TYA-PTC) delivering comprehensive treatments required for multiple rare cancers occurring in TYA and deliver holistic psychosocial support that is essential to meeting the unique and specific needs of TYA. BRIGHTLIGHT was a national evaluation of these TYA cancer services, which included a cohort study examining differences in quality of life (QoL), survival and costs of specialist care based on exposure to the TYA-PTC (all, some, or none). A difference was observed but not what we expected. Results suggest place of care matters considerably and TYA in the some-TYA-PTC experienced inferior QoL and lower survival compared to the all-TYA-PTC and no-TYA-PTC groups. These findings indicate that care split between TYA-PTCs and other trusts produces inferior outcomes. New commissioning guidance for 2020 also reflected concerns about poorer outcomes of TYA receiving care between hospitals. Limitations of BRIGHTLIGHT results include the recruitment period (2012-2014), and subsequent qualitative work demonstrated an evolution in TYA-PTC services, therefore it is possible that TYA-PTC care in 2020 has matured and current models of joint care would not generate similar results. The NHS England commissioning guidance proposed to invest in enhanced care for the some-TYA-PTC group, newly termed joint care . Joint care is delivered by the TYA-PTC and other NHS Trusts together. They are based on clinical expertise, patient/public consultation, but lack empirical data. BRIGHTLIGHT-2021 will provide the evidence to inform TYA cancer care policy maximising outcomes. Aims and objectives Determine if clinically significant differences exist in outcomes for TYA receiving joint care compared to all or no-TYA-PTC care in 2021. Explore the processes used to enable inter-organisational collaboration under joint care models. Determine the outcomes associated with joint care and how they may be optimised. Methods BRIGHTLIGHT-2021 comprises three work packages (WP): WP1: examines outcomes associated with joint care versus all or no-TYA-PTC care in a cohort of newly diagnosed TYA in England. An adapted BRIGHTLIGHT survey will be administered to eligible TYA (n=~500-700). Comparisons of QoL and survival will be made between joint care, all, and no-TYA-PTC care. WP2: describes inter-organisational collaboration associated with joint care, using rapid ethnography. Observation, interviews, and documentary analysis will be conducted in the 13 TYA-PTCs and care networks. WP3: develops evidence-based guidance to underpin the delivery of cancer services for TYA by assimilating WP1 and WP2 results. Timeline for delivery Data collection in WP1 and WP2 will be undertaken simultaneously over 6 months. WP2 will be complete by 31/12/2021. WP1 data linkage with NHS data will be possible in 10/2022, so final analysis and results will be available 04/2023. Anticipated impact and dissemination This proposal relates to an NHSE Specialised Commissioned Service under review. Findings will inform commissioned policy and direct clinical care including patient and clinician decision-making regarding best place of care. Results will be shared through healthcare professional and patient forums using traditional and creative methods.

Lay abstract: Background In England, around 2,100 young people aged 16-24 years are diagnosed with cancer annually. Young people develop rare cancers and are more likely to experience significant impacts on their mental health, education and relationships with friends/family which means they need specialist care. Thirteen cancer hospitals called Principal Treatment Centres (PTCs) specialise in treating young people. Not all patients are treated in PTCs. Young people can have: All care delivered in PTC No care delivered in PTC, all their care is in a children s or adult hospital. Some care in a PTC and some care in another hospital, this is called joint care . The NIHR funded study BRIGHTLIGHT investigated the impact of having all care in a PTC, versus no care and some care in a PTC. Results suggest young people whose care is divided between PTCs and other hospitals (joint care) have lower quality of life, lower survival and more expensive care than those having all their care in a PTC or no care in a PTC. New NHS commissioning guidance recommends joint care . It is important to assess whether the findings of BRIGHTLIGHT still hold or, whether now joint care can be as good as those being treated in one type of hospital. Aims Do young people in joint care have similar quality of life compared to those treated in one hospital. What processes are needed between hospitals to deliver effective care. What recommendations can be made to NHS England to organise cancer services to maximise outcomes. Methods We will use similar methods to BRIGHTLIGHT. A survey will be sent to around 700 young people within seven months of diagnosis asking about quality of life and other factors including social support, their experience of their cancer journey and care. We will use data collected by the NHS to determine whether they have had care in one hospital or if they had joint care . We will study in detail what happens between the 13 PTCs and the hospitals they link with. Identifying what makes good care and how care between hospitals could be improved. Finally, we will bring together patients, clinicians, and commissioners from NHS England help us understand the results and make recommendations for future care. PPI Young people are part of our team, additionally we will hold workshops with young people, dissemination includes accessible results created by an artist. Outputs/Dissemination. The results will allow care pathways to be designed which will give the best possible outcomes for young people and inform decisions about where it is best to be treated. Dissemination will be through open access peer reviewed journals and creative methods to facilitate accessibility of results to patients and public.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS