Systematic review of barriers and facilitators to clinical trial enrollment among adolescents and young adults with cancer: Identifying opportunities for intervention

Abstract

Adolescents and young adults (AYAs) are underrepresented in cancer clinical trials (CCTs). Limited trial enrollment slows progress in improving survival rates and prevents the collection of valuable biospecimens. A systematic literature review was conducted to assess barriers and facilitators to AYA enrollment in CCTs and to identify opportunities to improve enrollment. The PubMed MEDLINE, Web of Science, Scopus, and PsycINFO databases were searched to identify studies relevant to AYA CCT enrollment. Eligibility criteria included the qualitative and/or quantitative evaluation of barriers and facilitators to AYA enrollment. One hundred fifty‐five unique publications were identified; 13 were included in the final analysis. Barriers to AYA enrollment in CCTs included a lack of existing trials applicable to the patient population, limited access to available CCTs, and a lack of physician awareness of relevant trials. Facilitators of enrollment included optimizing the research infrastructure, improving the awareness of available CCTs among providers, and enhancing communication about CCTs between providers and patients. In conclusion, the limited available research reports institution‐ and patient‐level barriers and facilitators to AYA CCT enrollment. Because of persistent disparities in AYA enrollment, there is an urgent need to further identify the barriers and facilitators to AYA CCT enrollment to determine actionable areas for intervention.

Barriers and Facilitators to Adolescent and Young Adult Cancer Trial Enrollment: NCORP Site Perspectives

“…However, previous research suggests that many AYA trials are available at the national level, but sites are not opening these trials locally and struggle to enroll eligible AYAs ( 23 , 27 ). A recently completed systematic review found this to be a consistently reported barrier across studies ( 13 ). Stakeholders also noted that only COG members could enroll on COG-led trials.…”

“…The interview guide for each stakeholder was informed by a systematic review ( 13 ), drafted by the study investigators (EJS, HLK, MR, ITM) and reviewed by the study team for relevance. The interview guides were slightly modified for each stakeholder group to ensure relevance to the stakeholder’s role in enrollment.…”

“…Few studies have assessed the underlying reasons for the enrollment disparity ( 4 , 11 , 12 ). A recent systematic review suggests that limited physician awareness of current AYA trials, patient access to trials, and trial availability may contribute to low AYA enrollment ( 6 , 13‐24 ). Suggested facilitators to AYA enrollment include frequent communication between medical and pediatric oncology teams, presence of a research infrastructure conducive to enrolling AYAs on trials, and efforts aimed at increasing physician awareness of AYA studies.…”

Strategies for improving access to clinical trials by teenagers and young adults with cancer: A qualitative study of health professionals’ views

“…Whilst barriers to TYA's enrolment in cancer trials are relatively well-documented, a recent systematic review highlighted a paucity of studies attending to facilitators (Siembida et al, 2020).…”

“…Whilst barriers to TYA’s enrolment in cancer trials are relatively well‐documented, a recent systematic review highlighted a paucity of studies attending to facilitators (Siembida et al, 2020). Though various commentators have hypothesised how access might be improved (Burke et al, 2007; Davis et al, 2017; Freyer & Seibel, 2015; Gupta & Indelicato, 2014), empirically informed recommendations remain limited.…”