Abstract
Primary brain tumor (PBT) patients may experience existential distress; however, few studies have examined this issue. The objectives of this study were to (1) systematically review PBT representation in psycho-oncology literature regarding fear/anxiety related to progression, recurrence, and death and (2) preliminarily assess the prevalence of fear of dying in a sample of PBT patients. Systematic searching of three databases yielded 1555 articles for review. Of these, 327 studies met inclusion criteria (patient sample N = 132,951). Only eight studies (0.18% of the participants) included patients with a PBT diagnosis, potentially due to exclusion criteria such as cognitive impairment or specific treatment parameters which may prohibit PBT patient participation. Review of the results from the eight included studies revealed mixed methods and limited demographic analyses; existential distress was correlated with heightened depression and anxiety, and overall worsened quality of life. From the original data collection, approximately one-third of PBT patients endorsed fear of dying, which was positively related to depression severity. Taken together, results suggest that PBT patients are considerably underrepresented in existential psycho-oncology literature, despite preliminary findings suggesting prevalence of these concerns. Future research on existential distress in neuro-oncology is warranted.