Kaye Erica C, Farner Harmony, Mehler Shoshana, Bien Kelly, Mali Nidhi, Brinkman Tara M, Baker Justin N, Hinds Pamela, Mack Jennifer W
Department of Oncology, St Jude Children's Research Hospital, Memphis, TN.
Department of Psychology and Biobehavioral Sciences, St Jude Children's Research Hospital, Memphis, TN.
JCO Oncol Pract. 2025 Apr;21(4):552-560. doi: 10.1200/OP.24.00249. Epub 2024 Sep 6.
Clear prognostic communication is associated with improvements in quality of life and suffering for children with advanced illness. Yet recent evidence demonstrates that pediatric oncologists often avoid, defer, or soften prognostic disclosure. We aimed to describe pediatric cancer shareholder perspectives on quality prognostic communication to inform design of an intervention to improve prognostic disclosure in advanced childhood cancer.
Semi-structured interviews were conducted with a purposeful sample of pediatric patients with cancer (n = 20), parents (n = 20), and oncologists (n = 20) representing six institutions across five states. Rapid analysis was performed using the National Cancer Institute core communication functions to organize domains of inquiry.
Three main themes were endorsed by participants regarding the ideal timing of prognostic disclosure: early, ongoing, individualized. Although each group emphasized the need for an individualized approach, oncologists rarely elicited patient/parent preferences for prognostic communication and more commonly inferred what a patient/family wanted to hear. Participants described five key pillars for how to facilitate quality prognostic disclosure: conversation leadership, overall attendance, patient inclusion, location, and atmosphere. They also identified four themes around ideal prognostic content: range of information, use of numbers, population-level versus patient-specific information, and tone/delivery. Discordant recommendations between patients/parents and oncologists emerged for how much and what information to share.
Pediatric cancer shareholders advocated for diverse, and sometimes conflicting, approaches for prognostic disclosure. Although nearly all participants endorsed the importance of individualized prognostic disclosure, specific strategies to encourage or facilitate person-centered prognostic conversation are lacking. Future research will focus on collaboration with pediatric patients, parents, and oncologists to codesign a clinical intervention to improve prognostic communication for children with advanced cancer and their families.
清晰的预后沟通与晚期疾病患儿的生活质量改善及痛苦减轻相关。然而，最近的证据表明，儿科肿瘤学家常常避免、推迟或淡化预后信息的披露。我们旨在描述儿科癌症相关利益者对于高质量预后沟通的看法，以为改善晚期儿童癌症预后信息披露的干预措施设计提供参考。
对来自五个州六个机构的20名儿科癌症患者、20名家长和20名肿瘤学家进行了有目的的抽样半结构化访谈。使用美国国立癌症研究所的核心沟通功能进行快速分析，以组织调查领域。
参与者认可关于预后信息披露理想时机的三个主要主题：早期、持续、个性化。尽管每个群体都强调需要个性化方法，但肿瘤学家很少询问患者/家长对于预后沟通的偏好，更常见的是推断患者/家庭想听什么。参与者描述了促进高质量预后信息披露的五个关键支柱：谈话主导、全员参与、患者纳入、地点和氛围。他们还确定了围绕理想预后内容的四个主题：信息范围、数字使用、群体层面与患者特定信息，以及语气/传达方式。在分享多少信息以及分享哪些信息方面，患者/家长和肿瘤学家之间出现了不一致的建议。
儿科癌症相关利益者主张采用多样的、有时甚至相互冲突的预后信息披露方法。尽管几乎所有参与者都认可个性化预后信息披露的重要性，但缺乏鼓励或促进以患者为中心的预后谈话的具体策略。未来的研究将专注于与儿科患者、家长和肿瘤学家合作，共同设计一种临床干预措施，以改善晚期癌症患儿及其家庭的预后沟通。
