Joint Center for Bioethics, University of Toronto, Toronto, Canada.
Department of Psychiatry and Dalla Lana School of Public Health, University of Toronto, Toronto, Canada.
BMC Cancer. 2018 Jun 4;18(1):629. doi: 10.1186/s12885-018-4515-2.
Adolescent and young adults (AYA) enrolment rates into cancer clinical trials (CCT) are the lowest of any age group globally. As AYA have distinct biological, psychosocial and relational needs, we aimed to explore any unique factors influencing their CCT decision-making process, including AYA-specific perceptions or attitudes towards CCT.
Qualitative interpretive descriptive methodology was used to explore AYA perceptions and decision-making related to CCT. An analytic approach conducive to inductive imagining and exploratory questioning was used in order to generate insights and interpret data.
A total of 21 AYA were interviewed (median age: 31 (18-39)). Twelve (57%) participants had previously been approached to participate in CCT. Major themes influencing trial enrolment decisions were: 1) severity of illness/urgency for new treatment 2) side effect profile of investigational drug in the short and long term (e.g., impact on future quality of life) 3) who approached patient for trial participation (oncologist vs. other) 4) additional information found on-line about the trial and investigators, and 5) family, friends and peer group opinion regarding the CCT.
Several psychosocial and relational factors were identified as influencing AYA CCT decisions, some of which are unique to this demographic. Specific strategies to address barriers to CCT and enable supportive decision-making include: 1) involving family in decision-making and 2) helping AYA appreciate short- and long-term implications of trial participation. Finally, exploring social networking and general education about CCT that AYA can independently access may increase participation.
青少年和年轻成年人（AYA）参与癌症临床试验（CCT）的比例是全球所有年龄段中最低的。由于 AYA 具有独特的生物学、心理社会和关系需求，我们旨在探索影响他们 CCT 决策过程的任何独特因素，包括 AYA 对 CCT 的特定看法或态度。
采用定性解释性描述方法来探索 AYA 对 CCT 的看法和决策。使用一种有利于归纳想象和探索性提问的分析方法，以产生见解并解释数据。
共对 21 名 AYA 进行了访谈（中位数年龄：31（18-39）岁）。12 名（57%）参与者曾被邀请参加 CCT。影响试验入组决策的主要主题包括：1）疾病的严重程度/对新治疗的紧迫性；2）试验药物的短期和长期副作用特征（例如，对未来生活质量的影响）；3）谁来邀请患者参加试验（肿瘤医生与其他人）；4）在线上找到的有关试验和研究人员的其他信息；5）家庭、朋友和同龄人群对 CCT 的看法。
确定了一些心理社会和关系因素影响 AYA CCT 决策，其中一些因素是该人群所特有的。解决 CCT 障碍和促进支持性决策的具体策略包括：1）让家庭成员参与决策；2）帮助 AYA 了解试验参与的短期和长期影响。最后，探索 AYA 可以独立访问的社交网络和关于 CCT 的一般教育可能会增加参与度。
