Abstract
BACKGROUND
Patients with malignant gliomas have a poor prognosis and high symptom burden. The supportive care needs of this population and their families have not been well described. We evaluated depression, anxiety, and prognostic understanding in malignant glioma patients and their family caregivers.
METHODS
We conducted a longitudinal study in patients with newly diagnosed malignant glioma and their caregivers, collecting self-report data at diagnosis and 3, 6, and 9 months post-diagnosis. Depression and anxiety were assessed by the Hospital Anxiety and Depression Scale, with subscale scores >7 considered clinically significant. Prognostic understanding was evaluated with the Prognosis and Treatment Perception Questionnaire, starting at the 3-month time point. Accurate prognostic understanding was defined as responses of “unlikely,” “very unlikely” or “no” chance of cure.
RESULTS
21.7% (15/69) of patients and 26.8% (15/56) of caregivers experienced clinically significant depression symptoms at diagnosis, while 24.6% (17/69) of patients and 55.4% (31/56) of caregivers experienced significant anxiety symptoms. Rates of caregiver anxiety remained high over time, with more than 60% of caregivers reporting clinically significant anxiety at 6 and 9 months post-diagnosis. Although 81.0% (47/58) of patients and 86.0% (37/43) of caregivers reported that it was “extremely” or “very” important to know about prognosis, only 43.1% (25/58) of patients and 67.4% (29/43) of caregivers reported accurate prognostic understanding at 3 months.
CONCLUSIONS
A significant proportion of patients with malignant gliomas have psychological distress at the time of diagnosis. Their caregivers experience even higher rates of psychological distress, with more than 50% reporting anxiety throughout the patients’ illness course. Interestingly, caregivers reported more accurate prognostic understanding than patients. Further research is needed to understand if this discordance in prognostic understanding contributes to caregiver distress. Interventions are needed to provide psychosocial support for these patients and caregivers and to improve communication about prognosis.