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

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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.