Communicating the Gist of Prognosis: An intervention to improve prognostic understanding in advanced lymphoma

项目摘要 了解预后对晚期癌症患者接受生命终末期（EOL）护理的能力至关重要 符合他们的喜好。对预后有准确了解的晚期癌症患者 更有可能参与预先护理计划（ACP;例如，不要复苏命令），更喜欢舒适护理 在重症监护中，接受与他们的喜好一致的护理，并在他们喜欢的死亡地点死亡。 对预后理解的研究主要集中在患有晚期实体瘤的白色患者。这 由于晚期淋巴瘤的独特疾病轨迹，差距是显著的。虽然最初的治疗目标是 大多数患者在疾病进展后， 濒临死亡不到一半的血液恶性肿瘤患者对以下方面有准确的了解： 他们的预后或从事ACP和恶性血液病患者更有可能接受强化治疗 实体瘤患者的终末期护理。此外，黑人患者对预后的理解较差的比率更高 和繁重的强化终末期护理，并且与白色患者相比不太可能参与ACP。率低 血液恶性肿瘤患者（尤其是黑人患者）中ACP和强化EOL护理的高发生率， 指出需要干预措施，以提高预后的理解和减少种族差异在非加太。的 本项目的目的是完善和试点测试的沟通干预，以改善黑色和白色 晚期淋巴瘤患者预后的理解和参与ACP。本研究的目标是： (1)制定文化上适当的沟通干预措施，以提高血液学家的能力， 与黑人和白色患者沟通预后;（2）评估 在血液科医生和黑人及白色晚期淋巴瘤患者中进行干预;和（3）测试前后 干预对黑人和白色患者预后理解（主要结局）的影响，参与 在ACP中，完成预先指示、生活质量、患者和血液科医生沟通满意度， 以及患者-血液学家对患者的医疗保健价值的一致性（次要结局）。满足这些 目标，我们将进行焦点小组与血液科医生（n = 16）和黑人和白色晚期淋巴瘤 患者（n = 32），以改善干预。接下来，我们将对n = 8名血液学家进行干预试验， n = 40例患者，评估基线、干预后和3个月后的结局， 干预的可行性、可接受性和前后效果。这些结果将告知NIH R01申请 进行干预效果的大规模随机对照试验。基于建立的模糊 本研究以痕迹理论为基础，采用新的研究方法， 在决策过程中。该项目将形成一个强大的基础，研究这个简短的可扩展的 具有很大潜力的干预措施，可改善预后理解、ACP和价值观一致的EOL护理。

PROJECT SUMMARY Prognostic understanding is vital to advanced cancer patients’ ability to receive end-of-life (EOL) care consistent with their preferences. Advanced cancer patients who have an accurate prognostic understanding are more likely to engage in advance care planning (ACP; e.g. do-not-resuscitate order), prefer comfort care over intensive care, receive care consistent with their preferences, and die in their preferred place of death. Research on prognostic understanding has largely focused on white patients with advanced solid tumors. This gap is notable due to the unique disease trajectory of advanced lymphoma. While the initial treatment goal is cure, prognosis suddenly and dramatically worsens following disease progression with the majority of patients nearing death. Less than half of patients with a hematologic malignancy have an accurate understanding of their prognosis or engage in ACP and hematologic malignancy patients are more likely to receive intensive EOL care than solid tumor patients. Further, black patients have higher rates of poor prognostic understanding and burdensome intensive EOL care and are less likely to engage in ACP than white patients. The low rates of ACP and high rates of intensive EOL care in patients with hematologic malignancies, especially black patients, point to a need for interventions to improve prognostic understanding and reduce racial disparities in ACP. The purpose of this project is to refine and pilot test a communication intervention to improve black and white advanced lymphoma patient prognostic understanding and engagement in ACP. The goals of this study are to: (1) develop a culturally appropriate communication intervention to improve hematologists’ ability to clearly communicate to black and white patients about prognosis; (2) evaluate the feasibility and acceptability of the intervention among hematologists and black and white advanced lymphoma patients; and (3) test the pre-post effect of the intervention on black and white patient prognostic understanding (primary outcome), engagement in ACP, completion of advance directives, quality of life, patient and hematologist communication satisfaction, and patient-hematologist agreement on the patient’s healthcare values (secondary outcomes). To meet these goals, we will conduct focus groups with hematologists (n=16) and black and white advanced lymphoma patients (n=32) to improve the intervention. Next, we will pilot test the intervention with n=8 hematologists and n=40 patients and assess outcomes at baseline, post-intervention, and three months later to examine the feasibility, acceptability, and pre-post effect of the intervention. These results will inform a NIH R01 application to conduct a large-scale randomized controlled trial of intervention efficacy. Grounded in the established Fuzzy Trace Theory, the present study takes the novel approach of targeting information processing strategies used during decision making. This project will form a strong foundation for research on this brief scalable intervention with strong potential to improve prognostic understanding, ACP, and values-concordant EOL care.