Abstract
BACKGROUND: Adolescent and young adults (AYA) with cancer are poorly recruited to early phase clinical trials compared to older adult patients, contributing to a slower improvement in survival outcomes. To overcome this, we need to better understand the barriers to recruitment. This study aimed to explore the attitudes of AYA with cancer (aged 16-24) towards clinical trials, compared with those of older patients (aged 25 and over). METHODS: This questionnaire-based study was conducted in a regional cancer centre in North-West England. Participants were eligible if they were previously diagnosed with cancer, and either in follow up, receiving or being considered for treatment. Responses were collected online using the Qualtrics™ tool. The outcome measure was the Cancer Treatment sub-scale of the Attitudes Toward Cancer Trials Scales (ACTS-CT), and nine additional questions as piloted for content and validity by Lewin et al. (2020). RESULTS: Fifty AYA [64% female] and 51 non-AYA [43% female] completed at least part of the questionnaire. At both participation and at initial diagnosis, most AYA respondents were aged 19-24 [62% and 50% respectively], while most non-AYA respondents were 30 or over [88%]. The most common diagnosis in AYA was lymphoma [46%], while in non-AYA it was carcinoma [43%]. Significant differences were observed between AYA and non-AYA participants in the personal benefits (p = 0.000) and personal and social value (p = 0.001) categories, and four of the additional statements including the importance of who approaches the patient (p = 0.000), concerns about the impact of trials on short term (p = 0.005) and long-term goals (p = 0.000), and feeling too overwhelmed to participate in a trial (p = 0.000). No significant differences were found in the personal barriers and safety and trust in the research process categories. CONCLUSIONS: Understanding the attitudes and concerns of AYA patients is crucial for the development of patient-centered approaches to clinical trial participation in this population. Here, we identified notable differences in the perspectives of AYA versus older patients that can be used to address inequalities in this group.