Which research priorities are defined by young people with cancer- second consultation by the National Cancer Research Institute’s Teenage and Young Adult Core Consumer Group


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Session type:

Lorna Fern1, James Ashton4, Katie Brooman4, Tom Grew4, Carol Irving2, Hannah Millington4, Carol Starkey4, David Wright3, Jeremy Whelan1
1University College Hospitals, London, United Kingdom,2Leeds Teaching Hospitals NHS Trusts, Leeds, United Kingdom,3Clatterbridge Centre for Oncology NHS Foundation Trust, Liverpool, United Kingdom,4NCRI Teenage & Young Adult Core Consumer Group, London, United Kingdom

Background

The National Cancer Research Institute’s 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:

  1.  Participate in research development with the TYA CSG
  2. Engage and deliver the research streams of the TYA CSG to a wider audience
  3. Provide feedback on the research of the TYA CSG

Method

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.

Results

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[1] 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.

Conclusion

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.