Attitudes Toward Cancer Clinical Trial Participation in Young Adults with a History of Cancer and a Healthy College Student Sample: A Preliminary Investigation

Abstract

Adolescents and young adults (AYAs) aged 15-39 at diagnosis have very low cancer clinical trial accrual rates. To date, no studies have examined attitudes toward clinical trial participation in this age range to determine if certain individuals are less likely to enroll if offered participation. The current study assessed attitudes toward participation using the Cancer Treatment Subscale of the Attitudes toward Cancer Trials Scales. Data were collected from a sample of leukemia and lymphoma survivors (=99) and a healthy college student sample (=397). Following a principal components analysis, two subscales-Personal Barriers/Safety and Personal Benefits-were retained for analysis. In the cancer survivor group, only 14 (13.3%) reported being offered participation in a cancer clinical trial, and only 8 of those 14 (7.6% of survivors) participated. Responses from leukemia and lymphoma survivors revealed no significant relationships between age, gender, race/ethnicity, clinical trial participation, insurance status, or social class with Personal Benefits or Personal Barriers/Safety. Healthy college females had more negative Personal Barriers/Safety attitudes compared to males after adjusting for race/ethnicity and social class (=0.01), but no associations were present when examining Personal Benefits as an outcome. This preliminary investigation suggests that drivers of attitudes toward clinical trial participation in AYAs are not well understood and may impact cancer trial participation. Future work should focus on defining attitudes toward cancer clinical trials in the AYA population and developing interventions to increase awareness, knowledge, and positive attitudes toward participating in cancer research.

The Adolescent and Young Adult with Cancer: A Developmental Life Course Perspective

“…This can be partially attributed to the paucity of trials for AYAs, especially trials that consider the unique biology of both AYAs and the common childhood (e.g., acute lymphoblastic leukemia) and adult (e.g., breast) cancers that occur in AYAs 77,78. Other barriers include lack of information or complexity of information regarding available clinical trials, fear of being treated like a guinea pig, lack of experience making complex decisions,70,80 and concerns about additional burden and safety 81. Conversely, AYAs with cancer often believe that enrollment in clinical trials can result in better treatment for themselves and help fight cancer 81.…”

“…Other barriers include lack of information or complexity of information regarding available clinical trials, fear of being treated like a guinea pig, lack of experience making complex decisions,70,80 and concerns about additional burden and safety 81. Conversely, AYAs with cancer often believe that enrollment in clinical trials can result in better treatment for themselves and help fight cancer 81. Thus, AYA capacity for enrollment in clinical trials could be promoted by: helping them prepare to be active participants in the informed consent session (e.g., developing a list of questions), having a nurse present during the session,82 and, for those who want to enroll, assisting with ongoing support for adhering to trial requirements such as planning transportation, use of medication reminder systems, and guidance related to selfmanagement of treatment-related physical and mental health symptoms that can interfere with treatment adherence.…”

Adolescent knowledge and attitudes related to clinical trials

“…However, while adolescents in general, and minority adolescents specifically, are underrepresented in trials, little is known about adolescents' knowledge and attitudes surrounding clinical trials. [8][9][10] As in adults, low awareness, poor attitudes, and other barriers to participation may influence enrollment. Furthermore, minority adolescents may be less receptive than NHWs to clinical trial participation due to greater distrust of the medical system.…”

“…Adolescents may represent an important priority population for clinical trial education given their underrepresentation in clinical trials. 8,9 To inform future educational interventions, we therefore sought to understand better the knowledge and attitudes of adolescents related to clinical trials and to assess race/ethnicity comparisons.…”

Fertility preservation and reproductive health in the pediatric, adolescent, and young adult female cancer patient

“…Pediatric patients generally have higher survival rates than adolescents and young adults at diagnosis [16] (Fig. 4) due to differences in tumor biology, increased access to care and socioeconomic factors [17]. Few cancers directly affect fertility in the pediatric and adolescent population except ovarian malignancies.…”