Which research priorities are defined by young people with cancer- second consultation by the National Cancer Research Institutes Teenage and Young Adult Core Consumer Group
Session type: Poster / e-Poster / Silent Theatre session
The National Cancer Research Institutes Teenage and Young Adult (TYA) Clinical Studies Group (CSG) promotes and generates research for cancer patients aged 13-24.
To ensure the development of meaningful and relevant research the TYA CSG invited young people to develop a suitable model of consumer involvement, recognising that this may be challenging due to the spectrum of tumour types, age range, and life stage commitments.
A Core Consumer Group (CCG) was thus created with the remit to:
- Participate in research development with the TYA CSG
- Engage and deliver the research streams of the TYA CSG to a wider audience
- Provide feedback on the research of the TYA CSG
The CCG conducted their second consultation with over 200 TYA, delivering a twenty minute presentation which explained the research streams of the TYA CSG; feedback was facilitated by an interactive survey using an electronic handheld set.
A total of 210 patients participated, 128 were aged 15-24 at diagnosis; 53% (n=66) female, 47% (n=58) male, unknown (n=4). Participants had typical TYA cancer; lymphoma (28.1%), leukaemia (21.9%), brain (13.3%), bone (12.5%), germ cell (8.6%) and soft tissue sarcoma (3.9%).
Consistent with the 2008 consultation TYA prioritised improving time-to-diagnosis as the most important area of research(47.5%), followed by late effects and survivorship(26.3%).
Participants overwhelmingly agreed research should include the effect of cancer on family and friends (80.4%). Participants were asked to rate the importance of quality-of-life in relation to survival, 75.3% rated quality-of-life and survival as equally important.
Involving TYA in research can be achieved by adopting novel ways of engaging and communication with young people; engaging with young people facilitates this. This second consultation demonstrates TYA are interested in research and improving time-to-diagnosis remains a priority, together with research which encompasses quality-of-life and the effect of cancer on friends and family.