How much time do we have? Longitudinal perception of prognosis in newly-diagnosed high grade glioma patients and caregivers compared to clinicians

Purpose Discordant prognostic awareness (PA) can cause distress, impact goals of care and future planning, especially in patients with high grade glioma (pwHGG) who have limited survival. We aimed to evaluate the feasibility of assessing PA of pwHGG, caregivers and clinicians using a single question and to evaluate these responses for discord, alignment and fluctuation over time. Methods This is a sub-study of an IRB-approved pilot study evaluating early palliative care and longitudinal symptom monitoring via a smart-device tool in 16 pwHGG and their caregivers receiving treatment at the Mayo Clinic Arizona (United States). Eligible patients were >= 18 years, English-speaking, newly-diagnosed, and had a willing caregiver. Participants answered a multiple-choice question asking for an estimate of their own or their loved one's survival on a monthly basis. Results All except one patient/caregiver dyad answered the question each time it was asked. The question did not appear to cause discomfort or increase conversations with clinicians around prognosis. PA of patients and caregivers fluctuated monthly, ranging from dismal to overtly optimistic, with a discordance frequency of 68%. Patients tended to be more optimistic than caregivers, and a higher QOL correlated to a more optimistic response. Clinicians' were more hopeful; their prediction tended to fluctuate less than those of patients and caregivers. Conclusions PA may be assessed in pwHGG and caregivers with a single, frank question. There is clear discordance between PA of patients, their caregivers and clinicians. Understanding fluctuates longitudinally through disease and treatment course. Additional studies on timing and ways of discussing prognosis in this population are needed.