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.

BackgroundMen who have sex with men (MSM), particularly MSM who identify as African-American or Black (BMSM), are the sociodemographic group that is most heavily burdened by the human immunodeficiency virus (HIV) epidemic in the United States. To meet national HIV testing goals, there must be a greater emphasis on novel ways to promote and deliver HIV testing to MSM. Obstacles to standard, clinic-based HIV testing include concerns about stigmatization or recognition at in-person testing sites, as well as the inability to access a testing site due to logistical barriers.ObjectiveThis study examined the feasibility of self-administered, at-home HIV testing with Web-based peer counseling to MSM by using an interactive video chatting method. The aims of this study were to (1) determine whether individuals would participate in at-home HIV testing with video chat–based test counseling with a peer counselor, (2) address logistical barriers to HIV testing that individuals who report risk for HIV transmission may experience, and (3) reduce anticipated HIV stigma, a primary psychosocial barrier to HIV testing.  MethodsIn response to the gap in HIV testing, a pilot study was developed and implemented via mailed, at-home HIV test kits, accompanied by HIV counseling with a peer counselor via video chat. A total of 20 MSM were enrolled in this test of concept study, 80% of whom identified as BMSM.ResultsAll participants reported that at-home HIV testing with a peer counseling via video chat was a satisfying experience. The majority of participants (13/18, 72%) said they would prefer for their next HIV testing and counseling experience to be at home with Web-based video chat peer counseling, as opposed to testing in an office or clinic setting. Participants were less likely to report logistical and emotional barriers to HIV testing at the 6-week and 3-month follow-ups.ConclusionsThe results of this study suggest that self-administered HIV testing with Web-based peer counseling is feasible and that MSM find it to be a satisfactory means by which they can access their test results. This study can serve as a general guideline for future, larger-scale studies of Web-based HIV test counseling for MSM.

Background Although it is well documented that adolescents and young adults (AYAs) with cancer have low participation in cancer clinical trials (CCTs), the underlying reasons are not well understood. We utilized the NCI Community Oncology Research Program (NCORP) network to identify barriers and facilitators to AYA CCT enrollment, and strategies to improve enrollment at community-based and minority/underserved sites. Methods We performed one-on-one semi-structured qualitative interviews with stakeholders (NCORP Site Principle Investigators, NCORP Administrators, Physicians involved in enrollment, Lead Clinical Research Associates or Clinical Research Nurses, Nurse Navigators, Regulatory Research Associates, Patient Advocates) in the AYA CCT enrollment process. NCORP sites that included high- and low-AYA enrolling affiliate sites and were diverse in geography and department representation (eg, pediatrics, medical oncology) were invited to participate. All interviews were recorded and transcribed. Themes related to barriers and facilitators and strategies to improve enrollment were identified. Results We conducted 43 interviews across 10 NCORP sites. Eleven barriers and 13 facilitators to AYA enrollment were identified. Main barriers included perceived limited trial availability and eligibility, physician gatekeeping, lack of provider and research staff time, and financial constraints. Main facilitators and strategies to improve AYA enrollment included having a patient screening process, physician endorsement of trials, an “AYA champion” on site, and strong communication between medical and pediatric oncology. Conclusions Stakeholders identified several opportunities to address barriers contributing to low AYA CCT enrollment at community-based and minority/underserved sites. Results of this study will inform development and implementation of targeted interventions to increase AYA CCT enrollment.

Several national reports and many individuals in the clinical oncology community have defined the adolescent and young adult (AYA) cancer population as individuals diagnosed between the ages of 15 and 39. However, neuroscience and developmental research have identified important decision-making skills (e.g., information processing, reasoning, emotion regulation) that are not fully developed during adolescence, making general, AYA-focused doctor-patient interaction guidelines potentially questionable for the adolescent cancer population. Most studies include adolescents in samples of pediatric cancer patients or include adolescents in samples of young adult cancer patients, but studies rarely consider adolescent cancer patients as a distinct, developmentally unique group. A systematic literature review was undertaken in October 2014 to begin to understand what is known about the doctor-patient relationship and communication preferences within adolescent oncology. From the 25 included studies, three important conclusions emerged: (1) discrepancies among adolescent patients, parents, and providers about the desired extent of involvement in treatment-related decisions; (2) patient desire for developmentally and culturally appropriate information provision; and (3) the desire and preference for how information is delivered, with recognition that these preferences may change with age. There was some variation in themes by study design, with studies directly observing medical consultations reporting less adolescent involvement in discussions than studies that surveyed doctors. The results of this review support the need for developmentally focused research and clinical guidelines that emphasize the experience of adolescent cancer patients separate from their older and younger counterparts.

BACKGROUND: Five-year relative survival for adolescent and young adult (AYA) patients with cancer diagnosed at the ages of 15 to 39 years is 85%. Survival rates vary considerably according to the cancer type. The purpose of this study was to analyze long-term survival trends for cancer types with the highest mortality among AYAs to determine where the greatest burden is and to identify areas for future research. METHODS: Using data from the Surveillance, Epidemiology, and End Results cancer registry and the National Center for Health Statistics, the authors examined the incidence, mortality, and survival for the 9 cancer types with the highest mortality rates in this age group from 1975 to 2016. JPSurv, new survival trend software, was used in the analysis. RESULTS: Results suggested significant improvements in 5-year relative survival for brain and other nervous system tumors, colon and rectum cancer, lung and bronchus cancer, acute myeloid leukemia, and non-Hodgkin lymphoma (all P values < .05). Limited or no improvement in survival was found for female breast cancer, cervical cancer, ovarian cancer, and bone and joint sarcomas. CONCLUSIONS: Five-year relative survival for multiple cancer types in AYAs has improved, but some common cancer types in this group still show limited survival improvements (eg, ovarian cancer). Survival improvements in colorectal cancer have been overshadowed by its rising incidence, which suggests a substantial disease burden. Future research should focus on female breast, bone, ovarian, and cervical cancers, which have seen minimal or no improvements in survival. Cancer 2021;0:1-10.