Abstract

Abstract BACKGROUND: Patients facing a new diagnosis of a high-grade glioma often report an inaccurate understanding of their poor prognosis. However, how oncologists communicate prognostic information at initial visits in the neuro-oncology clinic has not been fully studied. We sought to analyze how physicians share this devastating news with patients and their caregivers. METHODS: We audio-recorded and transcribed the initial neuro-oncology clinic appointments with patients with high-grade gliomas at a single academic medical center; during these visits, neuro-oncology clinicians (physicians and fellowship trainees) shared diagnostic and prognostic information with patients and caregivers. We analyzed visit content using thematic analysis. RESULTS: We enrolled 14 patients with newly diagnosed malignant gliomas (glioblastoma: 11 and anaplastic astrocytoma: 3); 9 neuro-oncology clinicians (6 attending physicians and 3 fellowship trainees) participated in the appointments. Emergent themes included: (1) Neuro-oncologists proactively offered diagnostic and prognostic information using clear and simple language to disclose incurability (e.g., that this is an “incurable,” “aggressive” cancer that “will come back”); (2) Neuro-oncologists shifted their language, content, and tone to balance this bad news with clinical information that offered hope and optimism (e.g., emphasizing a patient’s positive prognostic indicators, sharing examples of long-term survivors, and discussing ongoing research and clinical trials); (3) Neuro-oncologists further balanced diagnostic disclosure with offers of logistical support (e.g., support programs for the patient’s minor children and access to 24/7 telephone care) and emotional support (e.g., stating "I am always here”) to patients and family members. CONCLUSION: During initial clinic visits with patients with high-grade gliomas, neuro-oncologists disclosed frank information about the incurability of the illness while balancing this life-changing news with statements of hope, optimism, and support. Understanding how clinicians provide diagnostic and prognostic information may help inform efforts to improve patient-clinician communication and optimize support for patients and their families.

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