Department of Surgery, College of Medicine, University of Florida, Jacksonville, Florida, USA.
Department of Pediatric Hematology, Oncology and Bone Marrow Transplant, Cleveland Clinic Children's, Cleveland, Ohio, USA.
J Adolesc Young Adult Oncol. 2023 Jun;12(3):303-313. doi: 10.1089/jayao.2022.0050. Epub 2022 Jul 27.
Although participation of adolescents and young adults (AYAs) in cancer clinical trials (CCTs, i.e., cancer-directed treatment studies) is low, their decision-making perspectives are not well understood, especially following recent diagnosis. Semistructured interviews with younger AYAs (15-21 years old) eligible for a CCT were to be held within 60 days of beginning treatment at Children's Hospital Los Angeles, an academic pediatric hospital. Using grounded theory methods, key themes regarding CCT participation, barriers, and facilitators were identified from interview transcripts. Thematic saturation was confirmed. Of nine participants, three were <18 years old, four Hispanic, six male, six diagnosed with leukemia, eight enrolled in a CCT, and eight also enrolled in ancillary studies. Four overarching themes emerged: (1) Initial Consent encompassed the first discussion of CCT with patients reflecting positive and negative effects of timing, decisional role, and the emotional impact following cancer diagnosis; (2) Informing Participation involved decision-making processes, specific knowledge, comprehension, and external influences; (3) Participant Relationships emphasized the importance of communication and relationships with providers and parents; and (4) Patient Determinants centered on motives from different perspectives, pre-conceived attitudes, and understanding of CCTs. Recommendations for improving CCT participation among younger AYAs include separating the diagnosis/treatment and CCT discussions, assigning AYAs a meaningful decisional role, having ongoing provider conversations, designing trials to minimize burden, and developing age-appropriate decision aids.
尽管青少年和年轻人（AYAs）参与癌症临床试验（CCTs，即癌症定向治疗研究）的比例较低，但他们的决策观点尚不清楚，尤其是在最近确诊后。在洛杉矶儿童医院（一家学术儿科医院）开始治疗后 60 天内，对符合 CCT 条件的年轻 AYA（15-21 岁）进行半结构化访谈。使用扎根理论方法，从访谈记录中确定了关于 CCT 参与、障碍和促进因素的关键主题。主题达到了饱和。9 名参与者中，3 人未满 18 岁，4 人是西班牙裔，6 人是男性，6 人被诊断为白血病，8 人参加了 CCT，8 人还参加了辅助研究。出现了四个总体主题：（1）最初的同意包括与患者进行的第一次 CCT 讨论，反映了时间、决策角色和癌症诊断后情绪影响的积极和消极影响；（2）告知参与涉及决策过程、特定知识、理解和外部影响；（3）参与者关系强调了与提供者和父母沟通和关系的重要性；（4）患者决定因素集中于不同视角的动机、预先存在的态度以及对 CCT 的理解。提高年轻 AYA 参与 CCT 的建议包括将诊断/治疗和 CCT 讨论分开，为 AYA 分配有意义的决策角色，与提供者进行持续的对话，设计试验以尽量减少负担，并制定适合年龄的决策辅助工具。
