“Do you have a sense of how much time might be left for you?”
As difficult as it may be to ask a patient with malignant glioma that question, having a “candid discussion of awareness about curability and life expectancy is feasible and does not cause emotional distress,” a study presented at the 68th Annual Meeting of the American Academy of Neurology in Vancouver, British Columbia, Canada, has found.1
“Optimism and prognostic awareness are not mutually exclusive,” said Eli L. Diamond, MD, neuro-oncologist at Memorial Sloan Kettering Cancer Center in New York, NY, during the presentation. Although accurate prognostic awareness is associated with favorable outcomes, both psychologically and at the end of life, discussion of prognosis can be challenging for physicians, patients, and families.
To study prognostic awareness of patients with malignant glioma—with the central features of incurability and poor prognosis—Dr Diamond and colleagues conducted a pilot study, enrolling adults age 18 years or older admitted to the neurology service who had a Glasgow Coma Scale (GCS) score of 15, were aware of their age, and were nonaphasic.
Of the 56 patients who consented and registered for the trial, 50 were studied from January 2014 to March 2016. The median age was 50 years (range, 18 – 77 years), and the majority of patients were male (68%) and white (72%). Tumor was grade 4 in 68%. About half (52%) had the tumor located in the frontal lobe, and in 74% of patients, the tumor was right sided. Forty-eight percent of patients had multiply recurrent tumors, 18% had 1 recurrence, and 34% were in the upfront treatment phase.
Patients completed the Hopkins Learning Verbal Test-Revised (HVLT-R), the Trail Making Test Parts A and B, Controlled Oral Word Association Test, Functional Assessment of Cancer Therapy–Brain, the Hospital Anxiety and Depression Scale, and a 5-item communications preferences survey. All patients were offered psychiatry consultations, and when available, prognostic awareness of the matched caregiver was also assessed.
Dr Diamond also conducted a semi-structured prognostic awareness interview with each patient, asking 4 questions2: “What do you understand about your illness?” “How serious do you believe things are?” “What have you been told?” and “Do you have a sense of how much time might be left for you?”
The interview was audio recorded, transcribed, and consensus scored with a co-investigator psychologist, who also captured completion of the interview and any distress. Mild “distress” was observed in 20 patients (40%), defined as a “sad affect.”
Based on their responses, patients were rated as to their prognostic awareness. “Full” meant they understood malignant glioma to be incurable and were aware of life expectancy, “limited” meant they understood malignant glioma to be incurable but were “wildly unaware of life expectancy,” and “none” meant they believed malignant glioma to be curable.
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“In this population, 80% were aware that they had an incurable disease, but only 40% had a realistic estimate of their life expectancy,” Dr Diamond said. “This was no less the case in the context of multiply recurrent disease. It seems to be especially the case in non-GBM [glioblastoma] tumors, even in much later stages of disease. Awareness didn’t seem to be associated with a worse psychological state.”