Clinical Trial Participation: A Qualitative Study of Adolescents and Younger Adults Recently Diagnosed with Cancer.
Clinical Trial Participation: A Qualitative Study of Adolescents and Younger Adults Recently Diagnosed with Cancer.
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临床试验参与：最近诊断患有癌症的青少年和年轻人的定性研究。
DOI：
10.1089/jayao.2022.0050
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发表时间：
2023
影响因子：
2
通讯作者：
Freyer,DavidR
中科院分区：
文献类型：
--
作者：
Mobley,ErinM;Thomas,StefanieM;Brailsford,Jennifer;Ochoa,CarolY;Miller,Kimberly;Applebaum,Anise;Milam,Joel;Freyer,DavidR
目的：虽然青少年和年轻人（AYAs）参与癌症临床试验（CCT，即，癌症定向治疗研究）是低的，他们的决策的观点是不太了解，特别是最近diagnosis.Methods：半结构化的采访与年轻的AYA（15-21岁）有资格为CCT在儿童医院洛杉矶，学术儿科医院开始治疗的60天内举行。使用扎根理论的方法，关键主题的CCT参与，障碍，和促进者确定从采访成绩单。结果：在9名参与者中，3名<18岁，4名西班牙裔，6名男性，6名诊断为白血病，8名参加CCT，8名还参加辅助研究。出现了四个首要主题：（1）初始同意包括与患者首次讨论CCT，反映时间、决策角色和癌症诊断后的情感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角度的动机、先入为主的态度和对CCT的理解。结论：提高年轻AYAs参与CCT的建议包括将诊断/治疗和CCT讨论分开，分配AYAs有意义的决策角色，进行持续的提供者对话，设计试验以减少负担，以及开发适合年龄的决策辅助工具。
Purpose: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.Methods: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.Results: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.Conclusion: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.