St. Jude Children's Research Hospital, Memphis, Tennessee;
The University of Texas Southwestern Medical Center, Dallas, Texas.
Pediatrics. 2021 Jun;147(6). doi: 10.1542/peds.2020-044503. Epub 2021 May 5.
Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic communication impacts parental understanding of prognosis are poorly understood. In this study, we aimed to (1) characterize communication strategies used by pediatric oncologists to share prognostic information across a child's advancing illness course and (2) explore relationships between different communication approaches and concordance of oncologist-parent prognostic understanding.
In this prospective, longitudinal, mixed-methods study, serial disease reevaluation conversations were audio recorded across an advancing illness course for children with cancer and their families. Surveys and interviews also were conducted with oncologists and caregivers at specific time points targeting disease progression.
Seventeen children experienced advancing illness on study, resulting in 141 recordings (40 hours). Fewer than 4% of recorded dialogue constituted prognostic communication, with most codes (77%) occurring during discussions about frank disease progression. Most recordings at study entry contained little or no prognosis communication dialogue, and oncologists rated curability lower than parents across all dyads. Parent-oncologist discordance typically was preceded by conversations without incurability statements; ultimately, concordance was achieved in most cases after the oncologist made direct statements about incurability. Content analysis revealed 3 distinct patterns (absent, deferred, and seed planting) describing the provision of prognostic communication across an advancing pediatric cancer course.
When oncologists provided direct statements about incurability, prognostic understanding appeared to improve. Further research is needed to determine optimal timing for prognostic disclosure in alignment with patient and family preferences.
癌症患儿的父母认为在预后沟通方面存在缺陷。肿瘤医生如何透露疾病进展和不可治愈性的信息，以及预后沟通如何影响父母对预后的理解，这些都知之甚少。本研究旨在：(1)描述儿科肿瘤医生在儿童疾病进展过程中使用的沟通策略，以分享预后信息；(2)探讨不同沟通方法之间的关系以及肿瘤医生与家长对预后的理解的一致性。
在这项前瞻性、纵向、混合方法研究中，对患有癌症的儿童及其家庭在疾病进展过程中进行了一系列疾病再评估的对话录音。还在特定时间点针对疾病进展对肿瘤医生和护理人员进行了调查和访谈。
17 名儿童在研究中经历了疾病进展，共记录了 141 次对话（40 小时）。记录的对话中只有不到 4%构成了预后沟通，其中大多数（77%）发生在坦率地讨论疾病进展时。研究开始时的大多数录音几乎没有或根本没有预后沟通对话，而且在所有的对子中，肿瘤医生对治愈率的评估都低于家长。父母与肿瘤医生的意见不合通常是在没有不可治愈性陈述的对话之前发生的；最终，在肿瘤医生直接就不可治愈性发表声明后，大多数情况下都达成了一致。内容分析显示，在推进儿科癌症病程的过程中，有 3 种不同的模式（缺失、延迟和播种）描述了预后沟通的提供。
当肿瘤医生直接就不可治愈性发表声明时，预后的理解似乎有所改善。需要进一步研究，以确定与患者和家属偏好一致的最佳预后披露时机。
