Clinical trial enrollment of adolescent and young adult patients with cancer: a systematic review of the literature and proposed solutions

Figures & data

Table 1 Articles included in this review

Author (year)	Data acquisition methods/sample size assessed (if applicable)	Results
		Time periods	Age (years)	Clinical trial enrollment rates (%)
Mitchell et al (2004)^Citation24 (AUS)	Questionnaires via victoria Cancer Registry/576	1992–1996	10–15 16–19 20–24	34.7 6.9 4.2
Bleyer et al (2005)^Citation11	SEER (soft tissue, bone sarcomas)/3242	1997–2002	15–19 20–24 25–29 30–34 35–39	11 (s) 1 (s) 0.3 (s) 0.6 (s) 0.7 (s)	21.2 (b) 6.1 (b) 1.9 (b) 1.1 (b) 0.4 (b)
Bleyer et al (2006)^Citation2	CTEP	1997–2003	15–19 20–30	10–15 <2
Ferrari and Bleyer (2007)^Citation27 (ITA)	CTEP, AIEOP	1997–2003	15–19	25–30 (i)	10–15 (u)
Ferrari et al (2008)^Citation21	CTEP	2002–2003 (a), 2004–2005 (b)	15–19 20–24 25–29 30–34 35–39	9.4 (a) 4.3 (a) 2.4 (a) 2.7 (a) 3.5 (a)	12.4 (b) 5.7 (b) 2.6 (b) 2.9 (b) 3.4 (b)
Parsons et al (2011)^Citation5	SEER (NHL, HL, ALL, GCTs, osteo-Ewing’s, sarcomas)/1358	2006	15–19 20–24 25–29 30–34 35–39	34 8.8 3.4 5 3
Shaw and Ritchey (2007)^Citation14	Patient Enrollment at Children’s Hospital Pittsburgh/640	2001–2006	<15 15–22	38 27
Downs-Canner and Shaw (2009)^Citation10	Patient Enrollment at Children’s Hospital Pittsburgh, University of Pittsburgh Cancer Institute/212	2003–2006		26 (CHP) 4 (UPCI)
Fern et al (2008)^Citation26 (UK)	Contacted trial investigators (NCRN and CCLG lymphoma, leukemia, CNS, bone/soft tissue sarcoma, GCT)/I604	2005–2007	10–14 15–19 20–24	43.2 25.2 13.1
Fern and Whelan (2010)^Citation7 (UK)	NCRN and CCLG lymphoma, leukemia, CNS, bone sarcoma, GCT	2005–2008	15–19 20–24 25–29 30–34 35–39	24.5 (a) 10.6 (a) 8 (a) 8.4 (a) 7.5 (a)	64.7 (1) 47.7 (1) 45.7 (1) 53.6 (1) 37.6 (1)	72.7 (b) 20.6 (b) 7.1 (b) 6.4 (b) 5.9 (b)
Fern et al (2014)^Citation12 (UK)	Contacted trial investigators (NCRN and CCLG lymphoma, leukemia, CNS, bone/soft tissue sarcoma, GCT)/68,275 (0-59 years)	2005–2010	15–19 20–24 25–29 30–34 35–39	30 (a) 14 (a) 10 (a) 9 (a) 8 (a)	15 (c) <1 (c) 2 (c) <1 (c) <1 (c)	64 (b) 29 (b) 19 (b) 4 (b) 6 (b)
Shaw et al (2012)^Citation20	Patient referrals to AYA program at University of Pittsburgh Cancer Institute, Children’s Hospital Pittsburgh/57	2006–2010	15–22	23 (CHP) 33 (UPCI)
Harlan et al (2011)^Citation13	SEER/524	2008–2009	15–39	7
Potosky et al (2014)^Citation19	Patient/physician surveys and health records (ALL, HL, NHL, GCT sarcoma)/504	2007–2008	15–39	N/A
Albritton et al (2007)^Citation16	Utah Cancer Registry/1355	1994–2000	0–24	N/A
Crosson et al (2001)^Citation23	National Cancer Institute/706	1998–1999	0–39	N/A
Howell et al (2007)^Citation18	Georgia Comprehensive Cancer Registry/1751	1998–2002	0–19	N/A

Abbreviations: AUS, Australia; AEIOP, Associazione Italiana Ematologia Oncologia Pediatrica, AYA, adolescent and young adult; CNS, central nervous system; CTEP, Cancer Therapy Evaluation Program; CHP, Children’s Hospital of Pittsburgh; i, Italy; l, leukemia; N/A, not applicable; SEER, Surveillance, Epidemiology, End Results; UPCI, University of Pittsburgh Cancer Institute; NHL, non-Hodgkin lymphoma; HL, Hodgkin lymphoma; ALL, acute lymphoblastic leukemia; GCTs, germ cell tumors; NCRN, National Cancer Research Network; CCLG, Children’s Cancer and Leukaemia Group; a, all tumors; b, bone tumors; c, CNS tumors; s, soft tissue tumors; u, United States.

Figure 1 Surveillance, Epidemiology, End Results (SEER) data showing the change in 5-year survival of the most common cancer types from 1975 to 2011 in different age ranges among the AYA population.

Notes: Five-year relative survival for top five cancers by site for (A) 15- to 19-year olds, (B) 20- to 24-year olds, (C) 25- to 29-year olds, and (D) 30- to 34-year olds. Data from the website of the National Cancer Institute (http://www.cancer.gov).⁴³
Abbreviation: AYA, adolescent and young adult.

Figure 2 Trends in clinical trial enrollment of AYAs with cancer for the articles reviewed.^5,7,12,21,27

Notes: (A) Clinical trial enrollment of AYAs with all cancer (2002–2010). (B) Clinical trial enrollment for AYAs with bone and soft tissue tumors (1997–2010).
Abbreviation: AYA, adolescent and young adult.

Figure 3 The 4 Ps Conceptual “Onion Skin” Model. This model demonstrates the different “layers”, which are the barriers to clinical trial enrollment of AYA patients.

Abbreviation: AYA, adolescent and young adult.

Figure 4 Proposed strategies to improve clinical trial enrollment of AYA patients.

Abbreviation: AYA, adolescent and young adult.

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