Prognostic awareness and illness understanding in patients with malignant glioma and their caregivers.

Abstract

33 Background: Malignant gliomas (MG) are rapidly progressive, incurable tumors. Patients with glioblastoma, the most common MG, have a median survival of approximately 14 months when treated aggressively. Despite this poor prognosis, data is lacking on patients’ and caregivers’ (CGs’) understanding of patients’ prognosis and treatment goals and their communication preferences. We assessed prognostic awareness (PA) in patients with MG and their CGs three months following diagnosis. Methods: We conducted a prospective study in patients with newly diagnosed MG and their CGs. At three months post-diagnosis, we administered to patients and CGs the Prognosis and Treatment Perceptions Questionnaire, which assesses illness understanding, goals of treatment, and likelihood of cure. Results: At three months after diagnosis, 82.9% (68/82) of patients and 81.3% (52/64) of CGs reported that knowing prognosis is “extremely” or “very” important, yet only 42.6% (35/82) of patients and 60.9% (39/64) of CGs reported accurate PA, defined as responses of “unlikely,” “very unlikely,” or “no” chance of cure. 46.3% (38/82) of patients and 46.9% (30/64) of CGs reported that their oncologist’s primary goal was to “extend life as long as possible,” while 25.6% (21/82) of patients and 10.9% (7/64) of CGs stated that their oncologist’s goal was to cure their cancer. Patients’ primary goal was most frequently “to cure my cancer” [40.2% (33/82)], while CGs most often presumed that their loved ones’ treatment goal was to “extend life as long as possible” [43.8% (28/64)]. Conclusions: Patients with MG and their CGs report that PA is important, but most patients, and to a lesser degree their CGs, have inaccurate PA. Additionally, patients’ treatment goals differ from CGs’ perceptions of patients’ goals and oncologists’ presumed goals. Patients’ primary goal is often curative, while CGs frequently presume that their loved one’s goal is to prolong life without aiming for cure. Patients and CGs most often presume that their oncologists are primarily aiming to extend survival rather than cure their disease. Further investigation of interventions to improve conversations about prognosis among patients with MG, their CGs and their oncologists is warranted.