Distress persists in long-term brain tumor survivors with glioblastoma multiforme

Introduction  Glioblastoma multiforme (GBM) is the most common and aggressive type of primary brain tumor. The prognosis for GBM patients is extremely poor with an estimated median survival of 12 months. Despite this statistic, a number of GBM patients are living longer than in the past as new detection and treatment approaches are used. However, little is known about the psychological correlates of this disease. To address this issue we investigated distress and its sources in long-term survivors (LTS) of this disease. Materials and methods  Participants were asked to complete the National Comprehensive Cancer Network’s (NCCN) Distress Thermometer, a single-item rapid screening tool for distress. Participants were also asked to designate sources of distress from a 34-item list developed by the NCCN. Distress scores and sources of distress for long-term GBM survivors (>18 months) were compared to patients diagnosed within the last 18 months (<18 months). Results  Eight-three brain tumor patients participated in this study. Fifty-nine percent of LTS met the ≥ 4 cut-off score for distress (M = 4.61, SD 3.12) as compared to 49% of patients diagnosed less than 18 months (M = 3.93, SD = 2.21; x² = 0.406, NS), LTS reported fewer items of concern while more LTS reported being distressed. Conclusions  This study indicates that LTS of GBM report experiencing distress at similar levels to other brain tumor patients. Level of distress for LTS is directly related to the total number of concerns in both emotional and physical domains. Implications for cancer survivors  Regardless of LTS status, distress continues to be a part of the disease trajectory for many GBM patients. As such, attention to distress in these survivors of a major life threatening disease is warranted in follow up surveillance visits.