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Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital

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Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Minimal clinical trial participation among adolescents and young adults (AYAs) with cancer limits scientific progress and ultimately their clinical care and outcomes. These analyses examine the current state of AYA clinical research participation at a Midwestern comprehensive cancer center and affiliated pediatric hospital to advise program development and increase availability of trials and AYA participation. Enrollment is examined across all diagnoses, the entire AYA age spectrum (15–39), and both cancer therapeutic and supportive care protocols.

Methods

his study was a retrospective review of electronic medical records via existing databases and registries for all AYAs. Data were collected for AYAs seen by an oncologist at the adult outpatient cancer center or at the pediatric hospital between the years 2010 and 2014. Descriptive statistics and logistic regression analyses were conducted to characterize this sample.

Results

In the pediatric setting, 42.3% of AYAs were enrolled in a study compared to 11.2% in the adult setting. Regression analyses in the pediatric setting revealed that AYAs with private insurance or Caucasian race were more likely to participate. Within the adult setting, ethnicity, race, insurance, and diagnosis were associated with study participation; 54.8% of study enrollments were for cancer therapeutic and 43.4% for supportive care studies.

Conclusions

These results are comparable to previously published data and support the need for new local and national AYA initiatives to increase the availability of and enrollment in therapeutic clinical trials. The same is true for supportive care studies which play a crucial role in improving quality of life.

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References

  1. Adolescent and Young Adult Oncology Progress Review Group (2006) Closing the gap: research and care imperatives for adolescents and young adults with cancer. USA National Cancer Institute, Bethesda

    Google Scholar 

  2. Fern LA, Lewandowski JA, Coxon KM, Whelan J; National Cancer Research Institute Teenage and Young Adult Clinical Studies Group, UK (2014) Available, accessible, aware, appropriate, and acceptable: a strategy to improve participation of teenagers and young adults in cancer trials. Lancet Oncol 15(8):e341–e350. doi:10.1016/S1470-2045(14)70113-5

    Article  Google Scholar 

  3. Bleyer WA, Tejeda H, Murphy SM, Robison LL, Ross JA, Pollock BH, Severson RK, Brawley OW, Smith MA, Ungerleider RS (1997) National cancer clinical trials: children have equal access; adolescents do not. J Adolesc Health 21:366–373

    Article  CAS  PubMed  Google Scholar 

  4. Albritton K, Bleyer A (2003) The management of cancer in the older adolescent. Eur J Cancer 39:2548–2548

    Article  Google Scholar 

  5. Bleyer WA, Barr R (2006) Highlights and challenges. In: Bleyer WA, O’Leary M, Barr R, Reis LAG (eds). Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including seer incidence and survival 1975–2000. National Cancer Institute, NIH Pub. No. 06-5767, Bethesda, MD; at: www.seer.cancer.gov/publications/aya

  6. Bleyer A, Barr R (2009) Cancer in young adults 20 to 39 years of age: overview. Semin Oncology 36:194–206

  7. Bleyer A, Montello M, Budd T, Saxman S (2005) National survival trends of young adults with sarcoma: lack of progress is associated with lack of clinical trial participation. Cancer 103(9):1891–1897

    Article  PubMed  Google Scholar 

  8. Shaw PH, Boyiadzis M, Hussein T, Welsh A, Kemerer A, Davidson NE, Ritchey K (2012) Improved clinical trial enrollment in adolescent and young adult (AYA) oncology patients after the establishment of an AYA oncology program uniting pediatric and medical oncology divisions. Cancer 118(14):3614–3617

    Article  PubMed  Google Scholar 

  9. Albritton KH, Coccia P (2014) Influencing referral of adolescents and young adults with cancer to sites with higher rates of trial enrollment. Pediatrics 133:S104–S108. doi:10.1542/peds.2014-0122E

    Article  PubMed  Google Scholar 

  10. Freyer DR, Seibel NL (2015) The clinical trials gap for adolescents and young adults with cancer: recent progress and conceptual framework for continued research. Curr Pediatr Rep 3(2):137–145

    Article  Google Scholar 

  11. Hendricks-Ferguson V, Cherven B, Burns DS, Docherty SL (2013) Recruitment strategies and rates of a multi-site behavioral intervention for adolescents and young adults with cancer. J Pediatr Health Care 27:434–442. doi:10.1016/j.pedhc.2012.04.010

    Article  PubMed  Google Scholar 

  12. Collins CL, Malvar J, Hamilton AS, Deapen DM, Freyer DR (2015) Case-linked analysis of clinical trial enrollment among adolescents and young adults at a National Cancer Institute-designated comprehensive cancer center. Cancer 121(24):4398–4406

    Article  PubMed  Google Scholar 

  13. Downs-Canner S, Shaw PH (2009) A comparison of clinical trial enrollment between adolescent and young adult (AYA) oncology patients treated at affiliated adult and pediatric oncology centers. J Pediatr Hematol Oncol 31(12):927–929

    Article  PubMed  Google Scholar 

  14. Parsons HM, Harlan LC, Seibel NL, Stevens JL, Keegan THM (2011) Clinical trial participation and time to treatment among adolescent and young adults with cancer: does age at diagnosis or insurance make a difference? J Clin Oncol 29:4045–4053

    Article  PubMed  PubMed Central  Google Scholar 

  15. Sherman SL, Waldinger MB, Lepisto EM, Hinkel KA, Minogue DE, Paul DE (2010) The 2008 National Comprehensive Cancer Network (NCCN) Research Benchmarking Survey (RBS): clinical trials (CTs) operations in the academic center. J Clin Oncol 28: 15 s, (suppl; abstr 6154)

  16. Sherman SL, Waldinger MB, Paul DE (2011) The 2010 National Comprehensive Cancer Network Research Benchmarking Survey: clinical trials in the academic cancer center. JNCCN 9 (11): abstr 6116

  17. Buchanan ND, Block R, Smith WA, Tai E (2014) Psychosocial barriers and facilitators to clinical trial enrollment and adherence for adolescents with cancer. Pediatrics 133 (supl 3): s123-s130

  18. Shaw PH, Hayes-Lattin B, Johnson R, Bleyer A (2014) Improving enrollment in clinical trials for adolescents with cancer. Pediatrics 133 (sup 3): s109–13

  19. Roth ME, O’Mara AM, Seibel NL, Dickens DS et al (2016) Low enrollment of adolescents and young adults on cancer trials: insights from the community clinical oncology program. J Onc Practice 12(4):e388–e395

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Authors and Affiliations

  1. Northwestern University Feinberg School of Medicine, Chicago, IL, 60611, USA

    Stacy D. Sanford, Jennifer L. Beaumont, Mallory A. Snyder & Jennifer Reichek

  2. Robert H. Lurie Comprehensive Cancer Center of Northwestern University, 675 N. St. Clair Street Suite 21-100, Chicago, IL, 60611, USA

    Stacy D. Sanford

  3. Ann and Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, 60611, USA

    Jennifer Reichek

  4. Wake Forest School of Medicine, Winston-Salem, NC, 27157, USA

    John M. Salsman

Authors
  1. Stacy D. Sanford
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  2. Jennifer L. Beaumont
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  3. Mallory A. Snyder
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  4. Jennifer Reichek
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Correspondence to Stacy D. Sanford.

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There are no financial disclosures from the authors. This work was unfunded and there are no conflicts of interest. The authors have full control of all primary data and agree to allow review of the data upon request.

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Sanford, S.D., Beaumont, J.L., Snyder, M.A. et al. Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital. Support Care Cancer 25, 1579–1586 (2017). https://doi.org/10.1007/s00520-016-3558-7

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  • DOI: https://doi.org/10.1007/s00520-016-3558-7

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