家长和肿瘤医生对晚期儿童癌症预后告知的观点：沟通要点和误区。
Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.
机构信息
Department of Pediatrics, Washington University, St. Louis, MO, USA.
Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.
出版信息
Support Care Cancer. 2024 May 13;32(6):341. doi: 10.1007/s00520-024-08539-7.
PURPOSE
For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives.
METHODS
Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24 months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7 days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality.
RESULTS
A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls.
CONCLUSION
Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.
目的
对于患有晚期癌症的儿童及其家庭来说，进行预后沟通至关重要。不幸的是，数据表明，在疾病进展过程中，预后沟通的情况并不常见且不一致。在开发改善预后沟通的干预措施之前，我们旨在：（1）描述父母和肿瘤医生对预后沟通“最佳”方法的看法；（2）探讨父母和肿瘤医生观点的相似之处和不同之处。
方法
前瞻性随访患有预后不良实体瘤的儿童及其父母和肿瘤医生 24 个月或直至死亡。在疾病进展或复发时的医疗就诊后 0-7 天，对父母和肿瘤医生进行了匹配的半结构化访谈。采用反思性主题分析来描述父母和肿瘤医生对沟通质量的印象。
结果
在涉及 13 位父母和 5 位肿瘤医生的多次疾病再评估就诊后，共进行了 68 次访谈。确定了 9 个主要主题作为“最佳”方法：（1）坦诚清晰地沟通；（2）留有希望的空间；（3）依靠长期的关系；（4）个性化语言；（5）赋予患者和家庭权力；（6）与多学科团队合作；（7）提供预期指导；（8）营造氛围；（9）创造治疗空间。父母和肿瘤医生通常对有助于沟通的方法主题达成一致，但父母更明确地描述了沟通中的陷阱。
结论
父母和肿瘤医生描述了有助于预后沟通的清晰建议，并避免了在预后披露困难时应避免的沟通陷阱。未来的工作应在设计和测试改善晚期儿童癌症预后沟通的干预措施时纳入患者的观点。
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