PurposeAlthough cancer clinical trials (CT) offer opportunities for novel treatments that may lead to improved outcomes, adolescents and young adults (AYA) are less likely to participate in these trials as compared to younger children and older adults. We aimed to identify the perceptions and attitudes toward CT in AYA that influence trial participation.Materials and methodsA systematic review of cancer literature was conducted that assessed perceptions and attitudes toward CT enrollment limited to AYA patients (defined as age 15–39). We estimated the frequency of identified themes by pooling identified studies.ResultsIn total, six original research articles were identified that specifically addressed perceptions or attitudes that influenced CT participation in AYA patients. Three studies were conducted at pediatric centers – one at an AYA unit, one at an adult cancer hospital, and one was registry based. Major themes identified for CT acceptability included: hope for positive clinical affect, altruism, and having autonomy. Potential deterrents included: prolonged hospitalization, worry of side effects, and discomfort with experimentation.ConclusionLimited information is available with regard to the perceptions and attitudes toward CT acceptability among AYA patients, especially those treated at adult cancer centers, which prevents generalization of data and themes. Future research assessing strategies for understanding and supporting CT decision-making processes among AYA represents a key focus for future funding to improve CT enrollment.

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Purpose Adolescents and young adults (AYA) with cancer are increasingly using the internet and social media (SM) for cancerrelated information. AYA face specific challenges and thus require tailored resources that meet their needs. We describe the internet and SM preferences of AYA related to their cancer information seeking behaviors and their preferences for a future resource compared to middle-aged adults (MAA). Methods Cancer patients completed a cross-sectional survey related to their internet and SM usage, cancer information, and preferences for future resources. Chi-square tests were used to compare AYA and MAA. Results The mean (±SD) age in the AYA group was 30±6.1 years (n = 129); in MAA 55±6.7 years (n = 157). In general, AYA preferred internet sites over SM platforms for cancer-related information and prefer a website platform over a SM platform for a new resource. Few AYA were aware of hospital-based AYA-specific resources. MAA were less likely to use SM compared with AYA (13% vs 4%, p = 0.01); however, websites and SM platforms that were used were similar between the 2 groups. Participants endorsed having already researched certain topicsyet, these were also those desired in a new resource. Compared to MAA, AYA sought more information on diet/nutrition, physical activity, exercise/fitness, fertility, sexual health, and body image (all p values < 0.05). Conclusion AYA and MAA use similar resources on the internet and SM, but AYA sought information related to specific needs. Development of future resources should focus on an internet-based platform rather than a SM platform, coupled with promoting awareness of the resource.

PURPOSE: Fertility is an important issue for adolescents and young adults with cancer facing potential infertility. Egg cryopreservation options exist, but information is sometimes overwhelming. We evaluated a fertility preservation educational video and assessed patient and family knowledge and impressions at pre- and post-video timepoints. METHODS: We developed a whiteboard video to explain egg cryopreservation to patients and families. The video was evaluated on the basis of patient education best practices (readability, understandability, actionability). Participants were recruited using convenience sampling in oncology clinics. They completed questionnaires before and after watching to assess knowledge and interest. Inclusion criteria were patients age 13-39 years and minimum 1 month from diagnosis. Descriptive statistics, correlation analyses, and mean comparisons were conducted. RESULTS: The video script read at a grade 8 reading level. Average understandability and actionability scores were below the acceptable standard. We recruited 108 patients (mean age, 27 years) and 39 caregivers/partners. Patients’ knowledge about fertility preservation increased after viewing the video. Interest was high before and after, and satisfaction was high for both patients and caregivers. Participants appreciated information on process, procedure, and delivery but desired more information on logistics, including cost. CONCLUSION: A targeted patient education video about fertility preservation options can build knowledge and encourage discussions about infertility. The video can be used as a model for videos on related topics to provide accurate information in a youth-friendly medium; however, following patient education best practices for readability, understandability, and actionability may increase video effectiveness. Future research should assess how audiovisual patient education material affects patient behavior.