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Background A diagnosis of cancer may increase mortality salience and provoke death-related distress. Primary brain tumor (PBT) patients may be at particular risk for such distress given the certainty of tumor progression, lack of curative treatments, and poor survival rates. This study is the first to examine the prevalence of death-related distress and its correlates in PBT patients. Methods Adult PBT patients (N = 105) enrolled in this cross-sectional study and completed the Death Distress Scale (subscales: Death Depression, Death Anxiety, Death Obsession), Generalized Anxiety Disorder–7, and Patient Health Questionnaire–9. Prevalence and predictors of death-related distress, and the relationships of demographic variables to clusters of distress, were explored. Results The majority of PBT patients endorsed clinically significant death-related distress in at least one domain. Death anxiety was endorsed by 81%, death depression by 12.5%, and death obsession by 10.5%. Generalized anxiety was the only factor associated with global death-related distress. Cluster analysis yielded 4 profiles: global distress, emotional distress, resilience, and existential distress. Participants in the resilience cluster were significantly further out from diagnosis than those in the existential distress cluster. There were no differences in cluster membership based on age, sex, or tumor grade. Conclusions PBT patients appear to have a high prevalence of death-related distress, particularly death anxiety. Further, 4 distinct profiles of distress were identified, supporting the need for tailored approaches to addressing death-related distress. A shift in clusters of distress based on time since diagnosis also suggest the need for future longitudinal assessment.

Background The COVID-19 pandemic induced rapid adoption of telemedicine services for neuro-oncology patients at an increased risk of infection. Neuropsychological assessment is important to neuro-oncology care yet challenging to complete outside of a structured testing environment. Teleneuropsychology (TNP) has been explored in limited populations and proven feasible and reliable. Conducting TNP visits directly to patients’ home (DTH) had minimal prior study. Methods We used two voluntary surveys to examine acceptance (patients) and feasibility (providers) of DTH-TNP at two regionally diverse medical institutions providing neuropsychological services to neuro-oncology patients from April to September 2020. Results A total of 119 patients were scheduled during the study period, 79 of whom completed neuropsychological testing via DTH-TNP. Neuropsychology providers completed surveys on 68 of these encounters (86%). In 98% of cases, neuropsychologists were able to achieve or partially achieve the individually defined goals of their assessment. Common problems reported included patient dysregulation (16%) and slow/unreliable internet (15%). Of the 52 patients who responded, 98% were satisfied with the DTH-TNP experience, and 92% would recommend the virtual visit to others. All respondents felt understood by the examiner (100%) and the majority denied technical difficulties (90%), communication challenges (94%), or privacy concerns (98%). Patients reported reduced risk of infection and saved travel time as favorable aspects of DTH-TNP. Conclusions These preliminary results suggest neuro-oncology patients find DTH-TNP acceptable and neuropsychologists find it a feasible practice, while also recognizing its limitations. Results suggest that further study of DTH-TNP (eg, reliability, validity) for neuro-oncology patients is warranted.

Background Neurocognitive assessments have become integral to comprehensive neuro-oncology care. Existing screening tools may be insensitive to cognitive changes caused by medical treatments. Research supports the clinical value and psychometric properties of the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) in various medical populations; however, there is minimal evidence for its use in neuro-oncology. The purpose of the current study was to further explore the cognitive profile of patients with primary brain tumor (PBT) using the RBANS and to assess rates of below-expectation performance compared to normative data and estimated intellectual functioning. Methods Data were collected on 82 PBT patients (54% male; age range, 19-81 years). All patients were administered the RBANS-Update and the Advanced Clinical Solutions–Test of Premorbid Functioning (TOPF) according to standardized instructions. Cognitive strengths and weaknesses were identified for PBT patients. Descriptive analyses, t tests, and chi-squared tests were utilized to identify and compare cognitive profiles. Results Overall, cognitive performance was low average for PBT patients. When compared to standardization data, PBT patients performed significantly worse across all 5 RBANS indexes, with Attention and Memory showing the largest discrepancies. Estimated intelligence analyses reflected greater deficits in cognitive functioning than when compared to a normal distribution. Conclusions Preliminary research demonstrates the RBANS is an efficient screening tool to assess cognitive deficits in PBT patients. Data also support the importance of comparison to self, rather than normative distribution in ensuring proper identification and classification of patients.