Why Do We Need a Program for Adolescent and Young Adult Cancer?

Adolescents and young adults experience higher rates of cancer than children.

Cancer in adolescents and young adults is almost three times more common than cancer in children younger than 15. [1] In fact, cancer occurs in 1 in every 200 older adolescents and young adults. [2] Around age 15, many adolescents transition from pediatric to adult medical management. [3] But when it comes to cancer, adolescents and young adults should strongly consider seeking care from a pediatric oncology program.

Adolescents and young adults with cancer experience delayed diagnosis and treatment.

Compared to younger patients, worldwide research shows that adolescents and young adults experience increased delays from presentation with symptoms until diagnosis and treatment of cancer. [4] , [5] , [6] , [7]

Adolescents and young adults have higher cure rates when treated on pediatric treatment protocols.

The past few decades have seen improvements in cancer survival – but there is a lack of progress in survival improvement among adolescents and young adults compared to all other ages. [8]

The majority of adolescent and young adult patients are currently treated at adult facilities - but participation in pediatric cooperative group trials improves adolescent and young adult cancer outcomes. [9] , [10] , [11] In the United States, adolescents with non-Hodgkin lymphoma, leukemia, liver cancer, and bone tumors have a survival advantage if treated at a National Cancer Institute pediatric group institution. [12]

Take acute lymphoblastic leukemia, for example. Research shows us that older adolescent patients treated on pediatric protocols had a 6-year event-free survival of 64% compared to older adolescent patients treated on adult protocols, who had a 6-year event-free survival of only 38%. [13] European trials provided similar results: adolescents and young adults with ALL fare better when treated on pediatric clinical trials. [14] , [15]

Access to appropriate care is a significant challenge – one that we understand.

Unfortunately, adolescents and young adults have the lowest likelihood of participating in clinical trials for cancer. [16] Participation in clinical trials is affected by several factors, including insurance coverage and access to an institution that participates in clinical trials.

Adolescents and young adults are the most uninsured/underinsured group in the United States. Young adults ages 18-24 are the least likely of any age group to have health insurance - over 30% percent of this group does not have health insurance. [17] Young adults are also the fastest growing age group among the uninsured, accounting for 40% of the increase in the uninsured under age 65. [18]

Adolescents and young adults often lose coverage under their parents' policies or public programs at age 19, or when they graduate from high school or college. To help navigate the health insurance system, our social workers sit down with patients and their families evaluate their eligibility and explain options for insurance or financial assistance programs.

More than 90% of children younger than 15 with cancer are treated at institutions that participate in NCI-sponsored clinical trials. In contrast, only 22% of adolescents ages 15-19 are treated in hospitals that participate in clinical trials. And although 55-65% percent of children under 15 with cancer are enrolled in clinical trials, just 10% of adolescents ages 15-19 and only 2% of those ages 20-25 are enrolled in clinical trials. [19]

Cleveland Clinic Children’s is a long-standing and active member of Children’s Oncology Group (COG), sponsored by the National Cancer Institute, whose mission is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care. Members of our staff serve on COG committees as national experts charged with the task of defining research priorities and designing future clinical trials. Dr. Megan Burke, the medical director of our AYA Cancer Program, is our institution's Principal Investigator for COG and serves on COG's AYA committee. The goal of the AYA committee is to identify superior diagnostic methods and treatments for the cancers that occur during this age range and to increase accrual of adolescents and young adults with cancer onto clinical trials. She is also a Clinical Assistant Professor of Pediatrics at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University.

Everyone deserves access to the best available treatment and care from a team dedicated to their health, hope and well-being.

But when it comes to cancer, adolescents and young adults should strongly consider seeking care from a pediatric oncology program. Compared to younger patients, worldwide research shows that adolescents and young adults experience increased delays from presentation with symptoms until diagnosis and treatment of cancer.

Around age 15, many adolescents transition from pediatric to adult medical management. But when it comes to cancer, adolescents and young adults should strongly consider seeking care from a pediatric oncology program. Compared to younger patients, worldwide research shows that adolescents and young adults experience increased delays from presentation with symptoms until diagnosis and treatment of cancer.

  1. Bleyer A, Viny A, Barr, R. Chapter 1: Introduction. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. Bleyer A, O’Leary M, Barr R, Ries LAG (eds). National Cancer Institute, NIH Pub. No. 06-5767. Bethesda , MD 2006.
  2. Bleyer A, Barr, R. Chapter 15: Highlights and Challenges. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. Bleyer A, O’Leary M, Barr R, Ries LAG (eds). National Cancer Institute, NIH Pub. No. 06-5767. Bethesda , MD 2006.
  3. Ibid.
  4. Canadian Childhood Cancer Surveillance and Control Program. Diagnosis and Initial Treatment of Cancer in Canadian Adolescents 15 to 19 Years, 1995 to 2000. Ottawa , Canada : Health Canada , 2004.
  5. Canadian Childhood Cancer Surveillance and Control Program. Diagnosis and Initial Treatment of Cancer in Canadian Children 0 to 14 Years, 1995-2000. Ottawa , Canada : Health Canada , 2003.
  6. Haimi M, Peretz Nahum M, Ben Arush MW: Delay in diagnosis of children with cancer: a retrospective study of 315 children. Pediatr Hematol Oncol 2004;21:37-48.
  7. Gibbons L, Mao Y, Levy IG, Miller AB: The Canadian Childhood Cancer Control Program. CMAJ 1994;151:1704-9.
  8. Bleyer A, Viny A, et al.
  9. Nachman J, Sather HN, Buckley JD, et al: Young adults 16-21 years of age at diagnosis entered on Children’s Cancer Group acute lymphoblastic leukemia and acute myeloblastic leukemia protocols. Results of treatment. Cancer 1993;71(10 suppl):3377-85.
  10. Paulussen S, Ahrens S, Juergens HF: Cure rates in Ewing tumor patients aged over 15 years are better in pediatric oncology units. Results of GPOH CESS/EICESS studies. Proc Amer Soc Clin Oncol 2003;22:abstract #816.
  11. Ferrari A, Dileo P, Casanova M, et al: Rhabdomyosarcoma in adults. A retrospective analysis of 171 patients treated at a single institution. Cancer 2003;98:571-80.
  12. Rauck AM, Fremgen AM, Hutchison CL, Grovas AC, Ruymam FB, Menck HR: Adolescent cancers in the United States : a national cancer data base (NCDB) report. J Pediatr Hematol Oncol 1999;21:310.
  13. Stock W, Sather H, Dodge RK, Bloomfield CD, Larson A, Nachman J: Outcome of adolescents and young adults with ALL: A comparison of Children’s Cancer Group and Cancer and Leukemia Group B Regimens. Blood 2000;96:467a.
  14. de Bont JM, Holt B, Dekker AW, van der Does-van den Berg A, Sonneveld P, Pieters R: Significant difference in outcome for adolescents with acute lymphoblastic leukemia treated on pediatric vs adult protocols in the Netherlands. Leukemia 2004;18:2032-5.
  15. Boissel N, Auclerc MF, Lheritier V, 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;21:760-1.
  16. Bleyer A, Viny A, et al.
  17. DeNavas-Walt, C., B. Proctor, and C.H. Lee. Income, Poverty, and Health Insurance Coverage in the United States : 2004. U.S. Census Bureau., August 2005.
  18. S. R. Collins, C. Schoen, J. L. Kriss, M. M. Doty, and B. Mahato, Rite of Passage? Why Young Adults Become Uninsured and How New Policies Can Help, The Commonwealth Fund, Updated May 24, 2006
  19. Bleyer WA , Tejeda H, Murphy SM, et al. National cancer clinical trials: Children have equal access; adolescents do not. J Adolesc Health 1997;21:366-73.