Primary brain tumor representation in the post-traumatic growth literature: A scoping review.

Background: Post-traumatic growth (PTG) has been extensively explored within general oncology, yet little is known about the experience of PTG in neuro-oncology. This study aimed to determine the representation of patients with primary brain tumors (PBT) in the PTG literature. Methods: PsycINFO, PubMed, and CINAHL were systematically searched from inception to December 2022. Search terms were related to personal growth and positive reactions to cancer. Articles were first screened by titles and abstracts, then full texts were reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses method. Results: A total of 382 articles met the inclusion criteria. Of those, 13 included patients with PBT. Over 100 000 cancer patients were represented, with 0.79% having a PBT. Most research focused on low-grade gliomas. PTG negatively correlated with post-traumatic stress symptoms and avoidant coping. In the sole longitudinal study, patients with PBT demonstrated improved PTG after 1 year. Three quasi-experimental studies investigated the effect of mindfulness-based interventions with mixed-cancer samples and demonstrated improvement in PTG. Conclusions: The inclusion rate of patients with PBT in the PTG literature was significantly lower than the population prevalence rate (1.3% of cancer diagnoses). Relatively few studies focused exclusively on how patients with PBT experience PTG (k = 5), and those that did only included low-grade glioma. The experience of PTG in those with high-grade glioma remains unknown. Patients with PBT are scarcely included in research on PTG interventions. Few studies examined the relationship between PTG and medical, cognitive, or psychological characteristics. Our understanding of the PTG experience in neuro-oncology remains extremely limited.

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

OBJECTIVE: Caregivers of patients with primary brain tumor (PBT) describe feeling preoccupied with the inevitability of their loved one's death. However, there are currently no validated instruments to assess death anxiety in caregivers. This study sought to examine (1) the psychometric properties of the Death and Dying Distress Scale (DADDS), adapted for caregivers (DADDS-CG), and (2) the prevalence and correlates of death anxiety in caregivers of patients with PBT. METHODS: Caregivers (N = 67) of patients with PBT completed the DADDS-CG, Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder (GAD-7), Fear of Cancer Recurrence (FCR-7), and God Locus of Health Control (GLHC). Caregivers' sociodemographic information and patients' medical characteristics were also collected. Preliminary examination of the psychometric properties of the DADDS-CG was conducted using exploratory factor analysis, Cronbach's alpha, and correlations. The prevalence and risk factors of death anxiety were assessed using frequencies, pair-wise comparisons, and correlations. RESULTS: Factor analysis of the DADDS-CG revealed a two-factor structure consistent with the original DADDS. The DADDS-CG demonstrated excellent internal consistency, convergent validity with the PHQ-9, GAD-7, and FCR-7, and discriminant validity with the GLHC. Over two-thirds of caregivers reported moderate-to-severe symptoms of death anxiety. Death anxiety was highest in women and caregivers of patients with high-grade PBT. SIGNIFICANCE OF RESULTS: The DADDS-CG demonstrates sound psychometric properties in caregivers of patients with PBT, who report high levels of death anxiety. Further research is needed to support the measure's value in clinical care and research - both in this population and other caregivers - in order to address this unmet, psychosocial need.

Subjective executive dysfunction in patients with primary brain tumors and their informants: relationships with neurocognitive, psychological, and daily functioning.

OBJECTIVE: We assessed agreement between patient- and informant-report on the Behavior Rating Inventory of Executive Function - Adult (BRIEF-A) in patients with primary brain tumors (PBT) and differences on BRIEF-A in neurocognitive (intact v. impaired), psychological (asymptomatic v. distressed), and functional (independent v. dependent) categories using both patient- and informant-report. METHOD: PBT patients (n = 102) completed neuropsychological evaluations including the BRIEF-A, clinical interview, neurocognitive tests, and mood questionnaires. Correlations between the BRIEF-A and Informant (n = 39) were conducted. Differences in patient and informant BRIEF-A indices were investigated across five classifications: neurocognitive functioning, psychological functioning, medication management, appointment management, and finance management. RESULTS: Patient and informant BRIEF were correlated. There was no difference on BRIEF-A or Informant indices for intact v. impaired neurocognitive status. Higher BRIEF-A and Informant indices were observed among psychologically distressed v. asymptomatic patients. Results showed higher BRIEF indices among those requiring assistance with medication, appointments, and finances. CONCLUSIONS: Patients and informants agreed in their reports of executive function (EF). These reports, while not different in neurocognitive classification, were different in psychological functioning and in those needing assistance with instrumental activities of daily living (IADL). Patient- and informant-reported EF may provide important data regarding psychological and IADL functioning in this population.

Working memory training for adult glioma patients: a proof-of-concept study.

BACKGROUND: CogMed Working Memory Training (CWMT) is a computer-based program shown to improve working memory (WM) among those with cognitive impairments. No study to date has investigated its feasibility, acceptability, and satisfaction in adult patients with glioma, despite the well-documented incidence of WM impairment in this population. METHODS: Twenty patients with glioma and objective and/or perceived WM deficits enrolled in the study: 52% high-grade, 60% female, Mage = 47 (range = 21-72 years). Adverse events were monitored to determine safety. Feasibility and acceptability were assessed based on established metrics. Satisfaction was explored by exit-interviews. Neurocognitive tests and psychological symptoms were analyzed at baseline and post-CWMT to estimate effect sizes. RESULTS: Of 20 enrolled patients, 16 completed the intervention (80% retention rate). Reasons for withdrawal included time burden (n = 2); tumor-related fatigue (n = 1) or loss to follow-up (n = 1). No adverse events were determined to be study-related. Adherence was 69% with reasons for nonadherence similar to those for study withdrawal. The perceived degree of benefit was only moderate. Baseline to post-CWMT assessments showed medium to large effects on neurocognitive tasks. Psychological symptoms remained stable throughout the study period. CONCLUSIONS: CWMT was found to be safe and acceptable in adult patients with glioma. Enrollment, retention rates, and treatment adherence were all adequate and comparable to studies recruiting similar populations. Only moderate perceived benefit was reported despite demonstrated improvements in objectively-assessed WM. This may indicate that the time commitment and intervention intensity (5 weeks of 50-min training sessions on 5 days/week) outweighed the perceived benefits of the program. (Trial Registration Number: NCT03323450 registered on 10/27/2017).

Cancer, cognition, and COVID: delivering direct-to-home teleneuropsychology services to neuro-oncology patients.

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.

Examining fear of cancer recurrence in primary brain tumor patients and their caregivers using the Actor-Partner Interdependence Model.

OBJECTIVE: Fear of cancer recurrence (FCR) is related to psychological distress and poor quality of life in cancer patients and their caregivers. However, no studies have investigated FCR in neuro-oncology. Given the varied prognosis, treatment, and disease trajectory of brain cancer, FCR may affect patients and their caregivers differently. METHODS: Eighty adult primary brain tumor (PBT) patients and 52 caregivers completed questionnaires assessing FCR and psychological distress (depressive symptoms, generalized anxiety, and death anxiety). Differences in patient and caregiver FCR by demographic and medical characteristics were examined. Using multilevel modeling, the Actor-Partner Interdependence Model (APIM) was used to investigate the interrelationship between patient and caregiver FCR with demographics and psychological distress measures. RESULTS: Caregivers reported significantly higher FCR than patients. There were no effects of demographic or medical characteristics on patient FCR. Time since diagnosis was negatively related to caregiver FCR. All measures of psychological distress exerted a significant actor effect on FCR among both patients and caregivers. Two partner effects were found: caregiver depressive symptoms and death anxiety negatively predicted patients' FCR. CONCLUSIONS: This is the first investigation of FCR in PBT patients and their caregivers. Most demographic and medical characteristics were not related to patient or caregiver FCR. Caregiver FCR may be higher at the time of diagnosis and decrease over time. APIMs revealed actor effects on patient and caregiver FCR for all measures of psychological distress. Results demonstrated the dyadic effects of a brain tumor diagnosis, emphasizing the need to include caregivers in psychotherapy for neuro-oncology patients.

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

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.

Fear of Cancer Recurrence and Death Anxiety: Unaddressed Concerns for Adult Neuro-oncology Patients.

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.

Death-related distress in adult primary brain tumor patients.

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.