Improving Recruitment and Retention of Adolescents and Young Adults with Cancer in Randomized Controlled Clinical Trials

Overview

Journal Int J Adolesc Med Health

Specialty Pediatrics

Date 2019 Apr 12

PMID 30973826

Citations 5

Authors

Sharron L Docherty

Stacey Crane

Joan E Haase

Sheri L Robb

Affiliations

Soon will be listed here.

Abstract

Participation of adolescents and young adults (AYAs) with cancer in randomized clinical trials (RCTs) is necessary to advance treatments and psychosocial programs. Exploring AYAs experiences in an RCT will inform strategies to support recruitment and retention. A qualitative design was used to study the experiences of 13 AYAs in the Stories and Music for Adolescent and Young Adult Resilience during Transplant I (SMART I) trial. Key themes included: Weighing the Pros and Cons; Randomization Preferences; Completing Measures; and Worthwhile Experience. The experiences of AYAs during RCTs can bring insights that inform the design and management of AYA trials. Strategies include improving assent/consent processes, design of electronic interfaces and encouraging researcher flexibility.

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References

Pagano-Therrien J, Sullivan-Bolyai S . Research Participation Decision-Making Among Youth and Parents of Youth With Chronic Health Conditions. J Pediatr Health Care. 2016; 31(2):167-177. DOI: 10.1016/j.pedhc.2016.07.002. View

Mills E, Seely D, Rachlis B, Griffith L, Wu P, Wilson K . Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. Lancet Oncol. 2006; 7(2):141-8. DOI: 10.1016/S1470-2045(06)70576-9. View

Shaw P, Reed D, Yeager N, Zebrack B, Castellino S, Bleyer A . Adolescent and Young Adult (AYA) Oncology in the United States: A Specialty in Its Late Adolescence. J Pediatr Hematol Oncol. 2015; 37(3):161-9. DOI: 10.1097/MPH.0000000000000318. View

Ward-Smith P, Hamlin J, Bartholomew J, Stegenga K . Quality of life among adolescents with cancer. J Pediatr Oncol Nurs. 2007; 24(3):166-71. DOI: 10.1177/1043454207299656. View

Keegan T, Ries L, Barr R, Geiger A, Vollmer Dahlke D, Pollock B . Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults. Cancer. 2016; 122(7):1009-16. DOI: 10.1002/cncr.29869. View

Buchanan N, Block R, Smith A, Tai E . Psychosocial barriers and facilitators to clinical trial enrollment and adherence for adolescents with cancer. Pediatrics. 2014; 133 Suppl 3:S123-30. PMC: 4258829. DOI: 10.1542/peds.2014-0122I. View

Isenalumhe L, Fridgen O, Beaupin L, Quinn G, Reed D . Disparities in Adolescents and Young Adults With Cancer. Cancer Control. 2016; 23(4):424-433. DOI: 10.1177/107327481602300414. View

Haase J . Components of courage in chronically ill adolescents: a phenomenological study. ANS Adv Nurs Sci. 1987; 9(2):64-80. DOI: 10.1097/00012272-198701000-00010. View

Read K, Fernandez C, Gao J, Strahlendorf C, Moghrabi A, Pentz R . Decision-making by adolescents and parents of children with cancer regarding health research participation. Pediatrics. 2009; 124(3):959-65. DOI: 10.1542/peds.2008-2878. View

10.

Lang M, Giese-Davis J, Patton S, Campbell D . Does age matter? Comparing post-treatment psychosocial outcomes in young adult and older adult cancer survivors with their cancer-free peers. Psychooncology. 2017; 27(5):1404-1411. DOI: 10.1002/pon.4490. View

11.

Barr R, Ferrari A, Ries L, Whelan J, Bleyer W . Cancer in Adolescents and Young Adults: A Narrative Review of the Current Status and a View of the Future. JAMA Pediatr. 2016; 170(5):495-501. DOI: 10.1001/jamapediatrics.2015.4689. View

12.

Musick B, Robb S, Burns D, Stegenga K, Yan M, McCorkle K . Development and use of a web-based data management system for a randomized clinical trial of adolescents and young adults. Comput Inform Nurs. 2010; 29(6):337-43. PMC: 3101295. DOI: 10.1097/NCN.0b013e3181fcbc95. View

13.

Broome M, Richards D . The influence of relationships on children's and adolescents' participation in research. Nurs Res. 2003; 52(3):191-7. DOI: 10.1097/00006199-200305000-00009. View

14.

Burke M, Albritton K, Marina N . Challenges in the recruitment of adolescents and young adults to cancer clinical trials. Cancer. 2007; 110(11):2385-93. DOI: 10.1002/cncr.23060. View

15.

Roth M, OMara A, Seibel N, Dickens D, Langevin A, Pollock B . Low Enrollment of Adolescents and Young Adults Onto Cancer Trials: Insights From the Community Clinical Oncology Program. J Oncol Pract. 2016; 12(4):e388-95. PMC: 4960459. DOI: 10.1200/JOP.2015.009084. View

16.

Brawner B, Volpe E, Stewart J, Gomes M . Attitudes and beliefs toward biobehavioural research participation: voices and concerns of urban adolescent females receiving outpatient mental health treatment. Ann Hum Biol. 2013; 40(6):485-95. PMC: 4668940. DOI: 10.3109/03014460.2013.806590. View

17.

Woodgate R, Edwards M . Children in health research: a matter of trust. J Med Ethics. 2010; 36(4):211-6. DOI: 10.1136/jme.2009.031609. View

18.

Fidler M, Gupta S, Soerjomataram I, Ferlay J, Steliarova-Foucher E, Bray F . Cancer incidence and mortality among young adults aged 20-39 years worldwide in 2012: a population-based study. Lancet Oncol. 2017; 18(12):1579-1589. DOI: 10.1016/S1470-2045(17)30677-0. View

19.

Chao C, Xu L, Bhatia S, Cooper R, Brar S, Wong F . Cardiovascular Disease Risk Profiles in Survivors of Adolescent and Young Adult (AYA) Cancer: The Kaiser Permanente AYA Cancer Survivors Study. J Clin Oncol. 2016; 34(14):1626-33. DOI: 10.1200/JCO.2015.65.5845. View

20.

Crane S, Broome M . Understanding Ethical Issues of Research Participation From the Perspective of Participating Children and Adolescents: A Systematic Review. Worldviews Evid Based Nurs. 2017; 14(3):200-209. PMC: 5724520. DOI: 10.1111/wvn.12209. View