Biostatistics Epidemiology and Analytics for Research (BEAR) Core, Seattle Children's Research Institute, Seattle, Washington, USA.
Department of Pediatrics, MACC Fund Center for Cancer and Blood Disorders, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
Pediatr Blood Cancer. 2023 Oct;70(10):e30554. doi: 10.1002/pbc.30554. Epub 2023 Jul 12.
Individuals with advanced cancer face complex challenges, including prognostic uncertainty and evolving goals of care. Despite the unique psychosocial support needs of adolescents and young adults (AYAs), few studies have specifically examined AYA perspectives of and experiences with advanced cancer. The objective of this study was to describe the experience, needs, and perspectives of pediatric AYAs with advanced cancer.
We invited English-speaking AYAs (age 14-25 years) who were receiving treatment for advanced cancer at our single tertiary pediatric cancer center to participate in semi-structured interviews. We used directed content analysis for codebook development and then applied in-depth thematic network analysis to describe their perspectives and experiences with advanced cancer.
A total of 32 AYAs (86% of approached) completed interviews. A slight majority were male (59%) and non-Hispanic White (56%). Most were diagnosed with leukemia/lymphoma, had recurrent disease (84%), and were a mean 53 months from initial diagnosis. Organizing themes of "not being able to beat this," "not wanting to miss out," and "living each day" generated the global theme "do I have a future?" "Making tough medical decisions," "adjusting life/plans/perspectives," and "decisions about dying" were organized into the global theme "those decisions … were really hard." "Feeling like there is no one to talk to," "being away from family and friends," and "feeling like a burden" generated the global theme "I felt very alone."
Pediatric AYAs with advanced cancer describe unique challenges. Psychological support interventions are needed to empower AYAs to navigate difficult decisions and to cope with isolation.
晚期癌症患者面临着复杂的挑战，包括预后不确定和不断变化的治疗目标。尽管青少年和年轻人（AYAs）有独特的心理社会支持需求，但很少有研究专门探讨 AYA 对晚期癌症的看法和体验。本研究的目的是描述患有晚期癌症的儿科 AYA 的体验、需求和观点。
我们邀请了在我们的一家三级儿科癌症中心接受晚期癌症治疗的英语为母语的 AYA（14-25 岁）参加半结构式访谈。我们使用定向内容分析来开发代码本，然后应用深入的主题网络分析来描述他们对晚期癌症的看法和体验。
共有 32 名 AYA（接近人数的 86%）完成了访谈。略多数为男性（59%）和非西班牙裔白人（56%）。大多数被诊断为白血病/淋巴瘤，疾病复发（84%），从最初诊断开始平均 53 个月。“无法战胜这种疾病”、“不想错过”和“活在当下”三个主题组织成了“我有未来吗？”的全球主题。“做出艰难的医疗决策”、“调整生活/计划/观点”和“关于死亡的决策”组织成了“这些决策……真的很难”的全球主题。“感觉没有人可以交谈”、“远离家人和朋友”和“感觉像个负担”生成了“我感到非常孤独”的全球主题。
患有晚期癌症的儿科 AYA 描述了独特的挑战。需要心理支持干预来增强 AYA 做出困难决策和应对孤独的能力。
