Porter Amy S, Woods Cameka, Stall Melanie, Baker Justin N, Mack Jennifer W, Kaye Erica C
Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA.
Department of Pediatrics, The University of Texas Southwestern Medical Center, Dallas, Texas, USA.
J Palliat Med. 2023 Feb;26(2):210-219. doi: 10.1089/jpm.2022.0265. Epub 2022 Aug 17.
Most parents of children with cancer desire honest prognostic communication, yet oncologists often avoid clear prognostic disclosure. This study explored differences between oncologists' private assessments of prognosis and their prognostic communication with patients and parents. In this prospective, longitudinal, mixed-methods study, we audio-recorded serial disease reevaluation conversations between children with advancing cancer, parents, and primary oncologists and separately surveyed and interviewed oncologists at disease progression time points. At time points when oncologists privately described curability as ≤10%, content analysis was used to compare prognostic language in recorded dialogue with private responses about prognosis. Of 33 enrolled patient-parent dyads, 17 patients with high-risk cancer under the care of 6 primary oncologists experienced disease progression during the study period. In 95% of oncologist interviews at disease progression time points, oncologists either predicted curability to be ≤10% or incurable. In most interviews (82%), oncologists stated unequivocally that chances of cure were ≤10%, yet did not communicate these low odds during recorded discussions at the same time point. Analysis revealed three distinct communication patterns through which oncologists softened prognostic disclosure to patients and families: (1) statements acknowledging difficult prognosis yet leaving room for possibility of cure; (2) statements implying that cancer may progress without offering specifics; and (3) statements describing disease progression findings in detail without explaining what this meant for the patient's future life or survival. Pediatric oncologists often temper their assessment of poor prognosis when speaking with patients and families. Future work should explore serious conversation guides and other clinical interventions aimed at encouraging person-centered prognostic disclosure for patients with advancing cancer and their families.
大多数患癌儿童的家长都希望能得到关于预后的坦诚沟通，但肿瘤学家常常避免明确透露预后情况。本研究探讨了肿瘤学家对预后的私下评估与他们与患者及家长进行的预后沟通之间的差异。在这项前瞻性、纵向、混合方法研究中，我们对癌症病情进展期儿童、家长与主治肿瘤学家之间的系列疾病重新评估对话进行了录音，并在疾病进展时间点分别对肿瘤学家进行了调查和访谈。在肿瘤学家私下将治愈率描述为≤10%的时间点，我们采用内容分析法，比较录音对话中的预后措辞与关于预后的私下回应。在33对登记入组的患者-家长组合中，6位主治肿瘤学家所负责的17名高危癌症患者在研究期间病情出现进展。在疾病进展时间点对肿瘤学家进行的访谈中，95%的肿瘤学家要么预测治愈率≤10%，要么认为无法治愈。在大多数访谈（82%）中，肿瘤学家明确表示治愈的几率≤10%，但在同一时间点的录音讨论中并未传达这些低概率情况。分析揭示了肿瘤学家向患者和家属淡化预后披露的三种不同沟通模式：（1）承认预后艰难但仍为治愈留有余地的表述；（2）暗示癌症可能进展但未提供具体细节的表述；（3）详细描述疾病进展情况但未解释这对患者未来生活或生存意味着什么的表述。儿科肿瘤学家在与患者和家属交谈时，常常会缓和他们对不良预后的评估。未来的工作应探索严肃的谈话指南和其他临床干预措施，旨在鼓励以患者为中心，向癌症病情进展期患者及其家属披露预后情况。
