Impact case study database

Improvements in cancer death rates and quality of life for TYA

In 2005, research from Leeds was influential in the development of NICE guidance for improving cancer outcomes [ A]. There are 1,400 TYA diagnosed annually across various types of cancer in England. In 2019, NHS England published data comparing death rates for TYA between 2001 and 2013. Reductions in mortality have been revealed despite an increase in cancer incidence from 240 to 300 per million population (pmp). In 2001, the mortality for TYA was 44 pmp. In 2007, only 2 years after NICE guidance implementation, mortality was reduced to 42. Finally, in 2013, it was reduced to 32, resulting to a total of 27% reduction.

The BRIGHTLIGHT cohort study, to which the Leeds research team contributed key underpinning methods, reached over 1,200 TYA with cancer in over 100 NHS trusts in England between 2013 and 2017. Analyses indicate a significant positive impact from receiving specialised TYA cancer care [ B]. We observed improved metrics of care quality:

• 78% had multi-disciplinary team involvement in specialised care compared to 50% in non-specialised care;

• 44% of the TYA in specialised care who could benefit had their cancer precisely defined by contemporary molecular techniques compared to 22% in non-specialised care;

• 60% were assessed by rehabilitation services compared to 38%;

• 73% of females received future fertility care compared to 43%.

• On a 0-100 score, where 0 is poorest quality of life, patients receiving specialist cancer care improved by 15 points over 3 years, whereas those with no specialised care improved by 10 points. The patients treated in specialised care were also more severely unwell at the outset. A similar pattern of improved psychological morbidity was observed.

Internationally, cancer survival analyses have started to indicate the impact of our work. In the Nordic countries, Rostgaard et al have widely cited the application of our work, and analysed Nordic cancer registers to examine cancer survival for TYA. In 1999, cancer survival was 58%. In 2013, this increased to 77% survival [ C].

Impact upon clinical services and corresponding patient confidence

United Kingdom

The impacts since 2013 upon outcomes are mediated by changes within the 2005 NHS policy. Wilkinson et al [ 1] was cited within the NICE policy document (2005), mandating the creation of specialist cancer services for TYA within the NHS, and specifying the features of this specialised care [ D]. These services were gradually embedded within the NHS after 2005.

In 2001, there were 5 TYA cancer services in the world; one of which was in Leeds. By 2018, these increased to 26 in the UK due to our collaborative efforts. An independent patient experience analysis of surveys by Furness et al, using data from all TYA with cancer in England, demonstrated that TYA have more confidence in their care in specialised units [ E]. Moreover, improvement in satisfaction with care was revealed.

International Reach

There are indications that the process of specialisation in the UK is also improving cancer services internationally. Lewis was Co-Chair of Clinical Care Models within the US National Institutes of Health, National Cancer Institute and US Department of Health for Adolescent and Young Adult (AYA). This formed a Progress Review Group in 2006, which discussed the need for treating AYAs as a distinct group with special needs for clinical care and psychosocial support services. An infographic from Lewis’ research entitled ‘Key Elements of Patient-Centred Pathway’ was used to drive the panel’s discussion on the definition of a new model of care. The outcomes were published in the Report “Closing the gap: Research and care imperatives for adolescents and young adults with cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group”, whereby three main priorities were identified to promote a consistent standard for delivery of care to the AYA population [ F]. This report led to the creation of a workshop, sponsored by the American National Cancer Institute, entitled “Next Steps in Adolescent and Young Adult Oncology” which determined key decisions around AYA specialist care [ G]. These resulted in creating more AYA specialist clinical teams within US hospitals. By 2020, AYA specialist clinical teams were established within 42 US hospitals [ H] compared to 2 hospitals up to 2012.

Stark and Lewis led the TYA cancer research within the EU-FP7 European Network for Cancer in Children and Adolescents, for the period 2011-2016 [ I]. The network began with only 10 people working just in the UK, France and Germany, and received funds from the European Union to bring specialists together to achieve a shared understanding in treating TYA. By the end of 2016, the network consisted of approximately 350 people and had members from all but two EU nations. Since 2013, clinical networks of specialist TYA cancer wards were founded in 5 further regions of France, and entirely new networks and services were dedicated to TYA within the national Cancer Plans of Netherlands, Denmark and Eire.

Stark and Lewis were the invited international keynote speakers for the inauguration policy forum between the German adult and paediatric cancer societies in 2013. Their involvement resulted in the establishment of a new professional transition group; the Arbeitsgemeinschaft Adoleszenten junge Erwachsene. Stark was also an invited expert by the Indian Cancer Services in 2017, and his role was key for their launch of specialist TYA services [ J].

**Impact on international professional education

Stark is an inaugural member of the Adolescent and Young Adult education committee, jointly run by the European Society of Medical Oncology (ESMO) and Societe Internationale Oncologie Pediatrique European (SIOPE). He was a keynote speaker at the first ESMO medical training course on TYA oncology in 2018. His lectures addressed 39 oncology specialists from 18 nations for a Europe-wide professional certification and received excellent feedback. Delegates responded that following this course, they would change the selection of treatment for TYA, include multidisciplinary team advice, provide TYA specific psychological support and introduce improved patient assessments [ K].