Cancer Research and AYA
Teenagers and young adults (TYA) are less likely to be entered into cancer clinical trials and research compared to children and some older adults. This pattern of lower inclusion rates is reported internationally regardless of healthcare system and is thought to be related to suboptimal improvements in outcomes for this group. This Chapter describes, including two case studies, why clinical trials are important, what we can learn from existing literature and how young people can be involved in research design and study conduct.
KeywordsResearch Clinical trials Patient and public involvement
We would like to thank members of the Core Consumer Group and the BRIGHTLIGHT Young Advisory for their contribution to research studies under the aegis of the National Cancer Research Institutes Teenage and Young Adult Clinical Studies Group and BRIGHTLIGHT. The case study presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209-10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Lorna Fern is funded by Teenage Cancer Trust.
- 2.Hayes A, et al. Clinical trials. In: Bleyer A, Barr R, Whelan J, Ferrari A, Ries L, editors. Cancer in adolescent and young adults. Cham: Springer; 2016. p. 549.Google Scholar
- 4.National Institute for Clinical Excellencec. Improving outcomes guidance for children and young people. London: Crown Publishers; 2005.Google Scholar
- 7.Bleyer A, Budd T, Montello M. Lack of participation of older adolescents and young adults with cancer in clinical trials: impact in the USA. 2nd ed: Cancer Adolescent, Blackwell publishing; 2005. p. 32–45.Google Scholar
- 8.Fern L, Davies S, Eden T, Feltbower R, Grant R, Hawkins M, et al. Rates of inclusion of teenagers and young adults in England into National Cancer Research Network clinical trials: report from the National Cancer Research Institute (NCRI) Teenage and Young Adult Clinical Studies Development Group. Br J Cancer. 2008;99(12):1967–74.CrossRefPubMedPubMedCentralGoogle Scholar
- 17.Damenia AO, Turkevich EA, Semiglazov VF, Kochetova IA, Gurbanov SS, Bit-Sava EM, et al. Biological features of breast cancer in patients under 35. Vopr Onkologii. 2007;53(6):674–6.Google Scholar
- 21.Pearce S, Brownsdon A, Fern L, Gibson F, Whelan J, Lavender V. The perceptions of teenagers, young adults and professionals in the participation of bone cancer clinical trials. Eur J Cancer Care (Engl). 2016.; [Epub ahead of print].Google Scholar
- 28.Group IEW. Guideline for good clinical practice E6 (R1). International conference on harmonization. 1996.Google Scholar
- 31.Whelan J, Fern L. Cancer in adolescence: incidence and policy issues. In: Kelly D, Gibson F, editors. Cancer care for adolescents and young adults. Oxford: Blackwell Publishing Ltd.; 2008.Google Scholar
- 33.Association WM. Declaration of Helsinki- Ethical Principles for medical research involving human subjects. 2013.Google Scholar
- 34.Health Do. Cancer reform strategy, Chapter 6 Reducing cancer inequalities. London; 2007.Google Scholar
- 35.Administration FaD. Studies in support of special populations: geriatrics E7. Silver Spring; 1994.Google Scholar
- 36.Administration FaD. Clinical Investigation of medicinal products in the peadiatric population. Silver Spring; 2000.Google Scholar
- 45.Taylor RM. Optimising a retention strategy with young people: the BRIGHTLIGHT study. J Young Adult Adolesc Oncol. 2017 (in press).Google Scholar
- 48.Children St. Participation—Spice it up!; 2003.Google Scholar
- 49.Shaw C, Brady LM, Davey C. Guidelines for research with children and young people. London: National Childrens Bureau Research Centre; 2011.Google Scholar
- 51.Boissel N. Lymphoblastic leukaemia in adults. The European cancer congress 2015. Vienna; 2015.Google Scholar
- 52.Hough R, Rowntree C, Goulden N, Mitchell C, Moorman A, Wade R, et al. Efficacy and toxicity of a paediatric protocol in teenagers and young adults with Philadelphia chromosome negative acute lymphoblastic leukaemia: results from UKALL 2003. Br J Haematol. 2016;172(3):439–51.CrossRefPubMedGoogle Scholar
- 53.Network NCI. Clinical trial participation and outcomes in teenagers and young adults in England with acute lymphoblastic leukaemia. 2015. http://www.ncin.org.uk/view?rid=2908.
- 54.Brightlight. 2017. www.brightlightstudy.com.