Priority 5 from the Teenage and Young Adult Cancer PSP

UNCERTAINTY: What are the best ways of supporting a young person who has incurable cancer? (JLA PSP Priority 5)
Overall ranking 5
JLA question ID 0060/5
Explanatory note Some young people have a poor diagnosis from the outset. There has been little previous research focusing on the experiences of young people with incurable cancer. How best to support these young people is currently unknown.
Evidence

1) Barbara Gomes, Natalia Calanzani, Vito Curiale, Paul McCrone and Irene J Higginson (2013) Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007760.pub2/full  2) Ngwenya N, Kenten C, Jones L, Gibson F, Pearce S, Flatley M, Hough R, Stirling LC, Taylor RM, Wong G, Whelan J. (2017) Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis. J Adolesc Young Adult Oncol. 6(2):200-212. https://www.liebertpub.com/doi/10.1089/jayao.2016.0055  

1) Limited relevance for young people and does not fully answer the question. 23 studies (14 cancer, 6 mix of cancer/non-cancer patients, 3 non-cancer patients). Median/mean age ranged from 53 to 77. 2) Review states: there is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. Further research is needed focusing on the experiences and preferences of young adults.
Health Research Classification System category Cancer
Extra information provided by this PSP
Original uncertainty examples What are the best ways of supporting a young person who has incurable disease? ~ How can you support someone when they've just been told 'theres nothing more we can do' what's the best words? ~  what do palliatve services look like for this population - what are the gaps, what do we know about how best to support patients 
Submitted by 6 x health professionals 
PSP information
PSP unique ID 0060
PSP name Teenage and Young Adult Cancer
Total number of uncertainties identified by this PSP. 185  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 19 January 2018