Cancer Research and AYA

  • Lorna A. FernEmail author
  • Jeremy Whelan


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.


Research 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.


  1. 1.
    Smith MA, Seibel NL, Altekruse SF, Ries LA, Melbert DL, O’Leary M, et al. Outcomes for children and adolescents with cancer: challenges for the twenty-first century. J Clin Oncol. 2010;28(15):2625–34.CrossRefPubMedPubMedCentralGoogle Scholar
  2. 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
  3. 3.
    Bleyer A, Morgan S, Barr R. Proceedings of a workshop: bridging the gap in care and addressing participation in clinical trials. Cancer. 2006;107(7 Suppl):1656–8.CrossRefPubMedGoogle Scholar
  4. 4.
    National Institute for Clinical Excellencec. Improving outcomes guidance for children and young people. London: Crown Publishers; 2005.Google Scholar
  5. 5.
    Freyer D, Seibel N. The clinical trials gap for adolescents and young adults with cancer: recent progress and conceptual framework for continued research. Curr Peadiatr Rep. 2015;3(2):137–45.CrossRefGoogle Scholar
  6. 6.
    Bleyer WA, Tejeda H, Murphy SB, Robison LL, Ross JA, Pollock BH, et al. National cancer clinical trials: children have equal access; adolescents do not. J Adolesc Health. 1997;21(6):366–73.CrossRefPubMedGoogle Scholar
  7. 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. 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
  9. 9.
    Fern LA, Lewandowski JA, Coxon KM, Whelan J. Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. Lancet Oncol. 2014;15(8):e341–50.CrossRefPubMedGoogle Scholar
  10. 10.
    Ferrari A. Michael Montello Troy Budd Archie Bleyer. the challenges of clinical trials for adolescents and young adults with cancer. Pediatr Blood Cancer. 2008;50(S5):1101–4.CrossRefPubMedGoogle Scholar
  11. 11.
    Mitchell AE, Scarcella DL, Rigutto GL, Thursfield VJ, Giles GG, Sexton M, et al. Cancer in adolescents and young adults: treatment and outcome in Victoria. Med J Aust. 2004;180(2):59–62.PubMedGoogle Scholar
  12. 12.
    Bleyer A, Montello M, Budd T, Saxman S. National survival trends of young adults with sarcoma - lack of progress is associated with lack of clinical trial participation. Cancer. 2005;103(9):1891–7.CrossRefPubMedGoogle Scholar
  13. 13.
    Desandes E, Lacour B, Sommelet D, White-Koning M, Velten M, Tretarre B, et al. Cancer adolescent pathway in France between 1988 and 1997. Eur J Oncol Nurs. 2007;11(1):74–81.CrossRefPubMedGoogle Scholar
  14. 14.
    Desandes E, Bonnay S, Berger C, Brugieres L, Demeocq F, Laurence V, Sommelet D, Tron I, Clavel J, Lacour B. Pathways of care for adolescents patients with cancer in France from 2006 to 2007. Peadiatr Blood Cancer. 2012;58:924–9.CrossRefGoogle Scholar
  15. 15.
    Unger JM, Cook E, Tai E, Bleyer A. The role of clinical trial parctipation in cancer research: barriers, evidence, and strategies. Am Soc Clin Oncol Educ Book. 2016;35:185–98.CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Bleyer A, Viny A, Barr R. Cancer in 15-to 29-year-olds by primary site. Oncologist. 2006;11(6):590–601.CrossRefPubMedGoogle Scholar
  17. 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
  18. 18.
    Lethaby CD, Picton S, Kinsey SE, Phillips R, van Laar M, Feltbower RG. A systematic review of time to diagnosis in children and young adults with cancer. Arch Dis Child. 2013;98(5):349–55.CrossRefPubMedGoogle Scholar
  19. 19.
    Boissel N, Auclerc MF, Lheritier V, Perel Y, Thomas X, Leblanc T, et al. Should adolescents with acute lymphoblastic leukemia be treated as old children or young adults? Comparison of the French FRALLE-93 and LALA-94 trials. J Clin Oncol. 2003;21(5):774–80.CrossRefPubMedGoogle Scholar
  20. 20.
    Ferrari A. SIAMO: Italian pediatric oncologists and adult medical oncologists join forces for adolescents with cancer. Pediatr Hematol Oncol. 2014;31(6):574–5.CrossRefPubMedGoogle Scholar
  21. 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
  22. 22.
    Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: A systematic review. Cancer. 2008;112(2):228–42.CrossRefPubMedGoogle Scholar
  23. 23.
    Ferrari A, Arico M, Dini G, Rondelli R, Porta F. Upper age limits for accessing pediatric oncology centers in Italy: a barrier preventing adolescents with cancer from entering national cooperative AIEOP trials. Pediatr Hematol Oncol. 2012;29(1):55–61.CrossRefPubMedGoogle Scholar
  24. 24.
    Taylor RM, Solanki A, Aslam N, Whelan JS, Fern LA. A participatory study of teenagers and young adults views on access and participation in cancer research. Eur J Oncol Nurs. 2016;20:156–64.CrossRefPubMedGoogle Scholar
  25. 25.
    Ferrari A, Bleyer A. Participation of adolescents with cancer in clinical trials. Cancer Treat Rev. 2007;33(7):603–8.CrossRefPubMedGoogle Scholar
  26. 26.
    Hay AE, Rae C, Fraser GA, Meyer RM, Abbott LS, Bevan S, et al. Accrual of adolescents and young adults with cancer to clinical trials. Curr Oncol. 2016;23(2):e81–5.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Taylor RM, Mohain J, Gibson F, Solanki A, Whelan J, Fern LA. Novel participatory methods of involving patients in research: naming and branding a longitudinal cohort study, BRIGHTLIGHT. BMC Med Res Methodol. 2015;15:20.CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Group IEW. Guideline for good clinical practice E6 (R1). International conference on harmonization. 1996.Google Scholar
  29. 29.
    Birch JM, Alston RD, Quinn M, Kelsey AM. Incidence of malignant disease by morphological type, in young persons aged 12–24 years in England, 1979–1997. Eur J Cancer. 2003;39(18):2622–31.CrossRefPubMedGoogle Scholar
  30. 30.
    Stark D, Bielack S, Brugieres L, Dirksen U, Duarte X, Dunn S, et al. Teenagers and young adults with cancer in Europe: from national programmes to a European integrated coordinated project. Eur J Cancer Care (Engl). 2016;25(3):419–27.CrossRefGoogle Scholar
  31. 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
  32. 32.
    Aapro MS, Kohne CH, Cohen HJ, Extermann M. Never too old? Age should not be a barrier to enrollment in cancer clinical trials. Oncologist. 2005 Mar;10(3):198–204.CrossRefPubMedGoogle Scholar
  33. 33.
    Association WM. Declaration of Helsinki- Ethical Principles for medical research involving human subjects. 2013.Google Scholar
  34. 34.
    Health Do. Cancer reform strategy, Chapter 6 Reducing cancer inequalities. London; 2007.Google Scholar
  35. 35.
    Administration FaD. Studies in support of special populations: geriatrics E7. Silver Spring; 1994.Google Scholar
  36. 36.
    Administration FaD. Clinical Investigation of medicinal products in the peadiatric population. Silver Spring; 2000.Google Scholar
  37. 37.
    Whelan JS, Bielack SS, Marina N, Smeland S, Jovic G, Hook JM, et al. EURAMOS-1, an international randomised study for osteosarcoma: results from pre-randomisation treatment. Ann Oncol. 2015;26(2):407–14.CrossRefPubMedGoogle Scholar
  38. 38.
    Arora RS, Alston RD, Eden TO, Geraci M, Birch JM. The contrasting age-incidence patterns of bone tumours in teenagers and young adults: implications for aetiology. Int J Cancer. 2012;131(7):1678–85.CrossRefPubMedGoogle Scholar
  39. 39.
    Johnson P, Federico M, Kirkwood A, Fossa A, Berkahn L, Carella A, et al. Adapted treatment guided by interim PET-CT scan in advanced Hodgkin's lymphoma. N Engl J Med. 2016;374(25):2419–29.CrossRefPubMedPubMedCentralGoogle Scholar
  40. 40.
  41. 41.
    Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.CrossRefPubMedGoogle Scholar
  42. 42.
    Taylor RM, Fern L, Whelan J, Pearce S, Grew T, Millington H, et al. “Your place or mine?” Priorities for a specialist teenage and young adult (TYA) cancer unit: disparity between TYA and professional perceptions. J Adolesc Young Adult Oncol. 2011;1(3):145–51.CrossRefPubMedGoogle Scholar
  43. 43.
    Fern LA, Taylor RM, Whelan J, Pearce S, Grew T, Brooman K, et al. The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults. Cancer Nurs. 2013;36(5):E27–38.CrossRefPubMedGoogle Scholar
  44. 44.
    Taylor RM, Fern LA, Solanki A, Hooker L, Carluccio A, Pye J, et al. Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer. Health Qual Life Outcomes. 2015;13:107.CrossRefPubMedPubMedCentralGoogle Scholar
  45. 45.
    Taylor RM. Optimising a retention strategy with young people: the BRIGHTLIGHT study. J Young Adult Adolesc Oncol. 2017 (in press).Google Scholar
  46. 46.
  47. 47.
  48. 48.
    Children St. Participation—Spice it up!; 2003.Google Scholar
  49. 49.
    Shaw C, Brady LM, Davey C. Guidelines for research with children and young people. London: National Childrens Bureau Research Centre; 2011.Google Scholar
  50. 50.
    Rowe JM, Buck G, Burnett AK, Chopra R, Wiernik PH, Richards SM, et al. Induction therapy for adults with acute lymphoblastic leukemia: results of more than 1500 patients from the international ALL trial: MRC UKALL XII/ECOG E2993. Blood. 2005;106(12):3760–7.CrossRefPubMedGoogle Scholar
  51. 51.
    Boissel N. Lymphoblastic leukaemia in adults. The European cancer congress 2015. Vienna; 2015.Google Scholar
  52. 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. 53.
    Network NCI. Clinical trial participation and outcomes in teenagers and young adults in England with acute lymphoblastic leukaemia. 2015.
  54. 54.
    Brightlight. 2017.
  55. 55.
    Gibson F, Fern L, Whelan J, Pearce S, Lewis IJ, Hobin D, et al. A scoping exercise of favourable characteristics of professionals working in teenage and young adult cancer care: ‘thinking outside of the box’. Eur J Cancer Care (Engl). 2012;21(3):330–9.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  1. 1.University College London Hospitals NHS Foundation TrustLondonUK

Personalised recommendations