Evaluation of Adolescents’ and Young Adults’ Attitudes Toward Participation in Cancer Clinical Trials

Abstract

PURPOSE: Participation in cancer clinical trials (CCTs) for adolescents and young adults (AYAs) remains the lowest of any patient group with cancer. Little is known about the personal barriers to AYA accrual. The aim of this study was to explore AYA attitudes that influence CCT participation. METHODS: A mixed-methods approach was used. AYAs and non-AYAs (≥ 40 years) completed the Cancer Treatment subscale of the Attitudes Toward Cancer Trials Scales and 9 supplementary questions formed from interview analysis. Differences between AYA and non-AYA cohorts were analyzed using the Mann-Whitney U test, and logistic regression models were constructed to evaluate the effect of demographics on perceptions of CCTs. RESULTS: Surveys were distributed to 61 AYAs (median age, 29 years; range, 17-39 years) and 74 non-AYAs (median age, 55 years; range, 40-88 years). Compared with non-AYAs, AYAs perceived CCTs to be unsafe/more difficult (Personal Barrier/Safety domain; P = .01). There were no differences based on age in other domains. AYAs were also more concerned with CCT interference in their long-term goals ( P = .04). Multivariable ordered logistic regression identified increased personal barriers in the Personal Barrier/Safety domain for AYAs ( P = .01), in patients with English as a second language (ESL; P < .01), and in patients previously not offered a clinical trial ( P = .03). Long-term goals were identified as a barrier in particular tumor types ( P = .01) and in patients with ESL ( P < .01), with a trend identified in AYAs ( P = .12). CONCLUSION: Age-related differences in attitudes toward CCTs suggest that tailored approaches to CCT accrual are warranted. Patient-centered delivery of information regarding CCTs, particularly in patients with ESL and who are trial naïve, may improve accrual.

Differences in Internet Use and eHealth Needs of Adolescent and Young Adult Versus Older Cancer Patients; Results from the PROFILES Registry

“…Namely, AYAs indicated that they had difficulties finding information tailored to their experience as a AYA, desired age-specific recommendations, and were concerned about the trustworthiness of internet sites. In addition, our study found that older adults searched more often for clinical trials online compared to AYAs, which is in line with the underrepresentation of AYAs participating in clinical trials [ 17 ].…”

Access to Care for Adolescents and Young Adults With Cancer in the United States: State of the Literature

“…52 Despite plentiful studies of barriers and facilitators to clinical trial enrollment among AYAs, few interventions or system-level changes (eg, simplifying enrollment) have addressed such barriers. [52][53][54][55][56][57][58][59][60][61][62][63] A metaanalysis suggests that moderate improvements have been made over the past decade in AYA clinical trial availability. 63 However, new collaborations may have the potential to further increase AYA enrollment.…”

Disparities in clinical trial enrollment at a Canadian comprehensive cancer center: A 15‐year retrospective study

“…We defined two categories of independent variables: 1) patient sociodemographic and disease characteristics, and 2) most responsible physician (MRP) characteristics. Sociodemographic characteristics included sex (male/female), age at diagnosis (defined as <40, 40–64, ≥65), 19,20 primary language (English, language other than English, or unknown), federal electoral district (FED) of the patients’ primary residences (based on 6‐digit postal code), 21 distance (km) of primary residence from the cancer center, community‐level marginalization, and presence of a primary care provider (PCP). The 2013 FED distribution, which divides the province of Ontario into 121 geographical areas with similar population sizes, was used as the ecologic unit of analysis to control for region.…”