Death anxiety in patients with primary brain tumor: Measurement, prevalence, and determinants

Abstract

Objective This study investigated death anxiety in patients with primary brain tumor (PBT). We examined the psychometric properties of two validated death anxiety measures and determined the prevalence and possible determinants of death anxiety in this often-overlooked population. Methods Two cross-sectional studies in neuro-oncology were conducted. In Study 1, 81 patients with PBT completed psychological questionnaires, including the Templer Death Anxiety Scale (DAS). In Study 2, 109 patients with PBT completed similar questionnaires, including the Death and Dying Distress Scale (DADDS). Medical and disease-specific variables were collected across participants in both studies. Psychometric properties, including construct validity, internal consistency, and concurrent validity, were investigated. Levels of distress were analyzed using frequencies, and determinants of death anxiety were identified using logistic regression. Results The DADDS was more psychometrically sound than the DAS in patients with PBT. Overall, 66% of PBT patients endorsed at least one symptom of distress about death and dying, with 48% experiencing moderate-severe death anxiety. Generalized anxiety symptoms and the fear of recurrence significantly predicted death anxiety. Significance of results The DADDS is a more appropriate instrument than the DAS to assess death anxiety in neuro-oncology. The proportion of patients with PBT who experience death anxiety appears to be higher than in other advanced cancer populations. Death anxiety is a highly distressing symptom, especially when coupled with generalized anxiety and fears of disease progression, which appears to be the case in patients with PBT. Our findings call for routine monitoring and the treatment of death anxiety in neuro-oncology.

Measuring and understanding death anxiety in caregivers of patients with primary brain tumor

“…Perhaps this is because they are caring for patients with poorer prognoses, whose possible lower functional status serves as a reminder of their mortality (Adelbratt and Strang, 2000). Interestingly, this finding is in contrast to reports from patients with PBT, in which there was no association between death anxiety and tumor grade (Loughan et al, 2021). Caregiver death anxiety was not associated with age, race, relationship to the patient, time since diagnosis, tumor type, tumor hemisphere, or treatment type.…”

“…This finding parallels a study of patients with PBT, where cluster analysis revealed that most patients endorsed high death anxiety but low emotional distress (i.e., symptoms of depression and anxiety) (Loughan et al, 2020). Yet, death anxiety in caregivers was even more prevalent (69%) than what was identified in a previous sample of patients with PBT, which found that 48% of patients endorsed moderate-to-severe death anxiety on the DADDS (Loughan et al, 2021). This finding echoes caregivers' description of their loved one's death as an "all-consuming preoccupation" (Applebaum et al, 2016) and follows a similar pattern of results of other measures of psychological distress, such that caregivers consistently report greater emotional distress than patients with PBT (Petruzzi et al, 2013;Baumstarck et al, 2018;Braun et al, 2021).…”

“…Internal consistency was assessed via Cronbach's alpha. Convergent validity was assessed by examining the correlation between participants' DADDS scores and their scores on the PHQ-9, GAD-7, and FCR-7; these measures were used to assess convergent validity in a previous investigation of patient death anxiety in PBT (Loughan et al, 2021). Divergent validity was assessed by examining the correlation between participants' scores on the GLHC and the DADDS.…”

“…Consistent with a previous analysis of caregivers in oncology, women were more likely to endorse death anxiety than men (Soleimani et al, 2017); however, it is important to note that this previous investigation assessed caregivers' death anxiety about their own death. Women with advanced cancer have also exhibited greater death anxiety, but this has not been replicated in patients diagnosed with PBT specifically (Loughan et al, 2021;Shapiro et al, 2021). Though the caregiving experience can vary greatly across brain tumor types (Schubart et al, 2008).…”

“…The DADDS is a promising measure to adapt for caregivers as it was created in the context of advanced cancer, unlike the DAS (Lo et al, 2011). Moreover, a previous investigation of patients in neuro-oncology found the DADDS to be psychometrically superior to the DAS (Loughan et al, 2021). We changed the wording to reflect the caregiver's anxiety about their loved one's death and conducted an exploratory factor analysis to determine the psychometric properties of this modified scale.…”