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.

Telehealth group Cognitive-Behavioral Therapy for Insomnia (CBT-I) in primary brain tumor: Primary outcomes from a single-arm phase II feasibility and proof-of-concept trial.

BACKGROUND: Cognitive-Behavioral Therapy for Insomnia (CBT-I), the frontline treatment for insomnia, has yet to be evaluated among patients with primary brain tumors (PwPBT) despite high prevalence of sleep disturbance in this population. This study aimed to be the first to evaluate the feasibility, safety, and acceptability of implementing telehealth group CBT-I as well as assessing preliminary changes in subjective sleep metrics in PwPBT from baseline to follow-up. METHODS: Adult PwPBT were recruited to participate in six 90-min telehealth group CBT-I sessions. Feasibility was assessed by rates of screening, eligibility, enrollment, and data completion. Safety was measured by participant-reported adverse events. Acceptability was assessed by retention, session attendance, satisfaction, recommendation of program to others, and qualitative feedback. Participant subjective insomnia severity, sleep quality, and fatigue were assessed at baseline, post intervention, and 3-month follow-up. RESULTS: Telehealth group CBT-I was deemed safe. Following the 76% screening rate, 85% of interested individuals met study eligibility and 98% enrolled (N = 44). Ninety-one percent of enrolled participants completed measures at baseline, 79% at post intervention, and 73% at 3-month follow-up. Overall, there was an 80% retention rate for the 6-session telehealth group CBT-I intervention. All participants endorsed moderate-to-strong treatment adherence and 97% reported improved sleep. Preliminary pre-post intervention effects demonstrated improvements in subjective insomnia severity, sleep quality, and fatigue with large effect sizes. These effects were maintained at follow-up. CONCLUSIONS: Results of this proof-of-concept trial indicate that telehealth group CBT-I is feasible, safe, and acceptable among PwPBT, providing support for future randomized controlled pilot trials.

Predictors of Healthcare Utilization in Family Caregivers of Persons With a Primary Malignant Brain Tumor.

ABSTRACT: BACKGROUND: Negative physical health results from the emotional stress of providing care to a family member with a primary malignant brain tumor; however, the downstream effects on caregivers' healthcare utilization (HCU) are unknown. This analysis examined associations between caregivers' emotional health and markers of HCU during the 6 months after patients' diagnoses. METHODS: Caregivers' self-report HCU data from a longitudinal study with 116 neuro-oncology caregivers were analyzed. Healthcare utilization was operationalized as number of prescription medications, reporting visits to primary care providers (PCPs), nature of PCP visit, number of comorbid conditions, and change in comorbid conditions. Potential predictors were caregivers' depressive symptoms (Center for Epidemiologic Studies-Depression Scale), hours providing care per day, mastery (Pearlin and Schooler), and burden (Caregiver Reaction Assessment). Logistic mixed effects modeling were used. RESULTS : Caregivers with higher levels of depressive symptoms ( P < .01), anxiety ( P = .02), burden related to schedule ( P = .02), and abandonment ( P < .01) were more likely to report worsening comorbid conditions. Those with higher mastery ( P = .02) were less likely to report worsening comorbid conditions. Caregivers who had a PCP visit and reported higher burden related to feelings of self-esteem ( P = .03) were more likely to report an illness-related visit. CONCLUSION : Findings suggest a relationship between neuro-oncology caregivers' emotional health and their HCU. Data highlight the importance of caregivers' PCPs identifying caregivers at risk for deteriorating health and increased HCU and intervene to ensure caregivers' self-care.

Study protocol for Cognitive Behavioral Therapy for Insomnia in patients with primary brain tumor: A single-arm phase 2a proof-of-concept trial.

Background: Sleep disturbance is among the most common symptoms endorsed by patients with primary brain tumor (PwPBT), with many reporting clinically elevated insomnia and poor management of their sleep-related symptoms by their medical team. Though Cognitive Behavioral Therapy for Insomnia (CBT-I) remains the front-line treatment for sleep disturbance, CBT-I has yet to be evaluated in PwPBT. Thus, it is unknown whether CBT-I is feasible, acceptable, or safe for patients with primary brain tumors. Methods: PwPBT (N = 44) will enroll and participate in a six-week group-based CBT-I intervention delivered via telehealth. Feasibility will be based on pre-determined metrics of eligibility, rates and reasons for ineligibility, enrollment, and questionnaire completion. Acceptability will be measured by participant retention, session attendance, satisfaction ratings, and recommendation to others. Safety will be assessed by adverse event reporting. Sleep will be measured both objectively via wrist-worn actigraphy and subjectively via self-report. Participants will also complete psychosocial questionnaires at baseline, post-intervention, and three-month follow-up. Conclusion: CBT-I, a non-pharmacological treatment option for insomnia, has the potential to be beneficial for an at-risk, underserved population: PwPBT. This trial will be the first to assess feasibility, acceptability, and safety of CBT-I in PwPBT. If successful, this protocol will be implemented in a more rigorous phase 2b randomized feasibility pilot with the aim of widespread implementation of CBT-I in neuro-oncology clinics.

The emotional journey of neuro-oncology: Primary brain tumor patients share their experience during this life-threatening disease.

Background: To achieve patient-centric quality care in neuro-oncology, all aspects of the disease and its impact on quality survival need to be considered. This includes the psychological consequences of a brain tumor diagnosis and subsequent life-altering experiences. Far too often the voice of our patients is unheard. Empowering patients to advocate for their own psychological needs is essential. Methods: Data were derived from four focus groups with adult patients with brain tumors (N = 15; M age = 46 years, 53% female). A trained moderator led each 90-min group and posed semi-structured questions regarding patients' care needs throughout their neuro-oncological disease trajectory. Emphasis was placed on the quality of life and distress reduction. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability (M kappa = 0.92, range = 0.85-0.93) was achieved. Two themes are presented here: Emotional Response to Stressors and Existential Considerations. Results: Of the two themes presented, 14 codes emerged. Codes were classified into three broad categories: Fear, Despair, and Resilience. The frequency of each category ranged from 31.4% to 34.7%. Example quotes and a discussion of each category follows. Conclusions: It is imperative that we include the patient perspective in the development of neuro-oncology programs, thereby considering the quality of survival in addition to quantity. Neuro-oncology quality care must be driven by our patients' experiences and should integrate support for emotional distress while promoting resilience throughout this life-threatening illness.

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.

Introducing FCR6-Brain: Measuring fear of cancer recurrence in brain tumor patients and their caregivers.

Background: Fear of cancer recurrence (FCR) is a psychological consequence of cancer diagnosis that impacts quality of life in neuro-oncology. However, the instruments used to assess FCR have not been tested for validity in patients with brain tumors. The present study explored the psychometric properties of a brief FCR scale in patients with primary brain tumor (PBT) and their caregivers. Methods: Adult patients with PBT (n = 165) and their caregivers (n = 117) completed the FCR-7-item scale (FCR7) and measures of psychological functioning. Exploratory factor analyses (EFA) were conducted for both patient and caregiver FCR7. Convergent validity, prevalence, the difference between FCR in patients and caregivers, and relationships with relevant medical and demographic variables were explored. Results: EFAs revealed a single factor with one item demonstrating poor loading for both patients and caregivers. Removal of the item measuring hypervigilance symptoms (checking for physical signs of tumor) greatly improved the single factor metrics. The amended scale (FCR6-Brain) demonstrated good convergent validity. Caregiver FCR was significantly higher than patient. Clinical guidance to identify clinically significant FCR was introduced. Age, gender, and time since diagnosis were related to FCR, with higher FCR in younger women more recently diagnosed. Conclusions: The FCR6-Brain is the first validated instrument to assess FCR in this population and should be used to identify individuals at risk for FCR and guide development of future psychotherapeutic interventions. This study highlights the distinct characteristics of FCR in neuro-oncology. Symptoms of hypervigilance in PBT patients need further investigation.

Quality of Life and Cognitive Function Evaluations and Interventions for Patients with Brain Metastases in the Radiation Oncology Clinic.

Brain metastases (BMs) account for a disproportionately high percentage of cancer morbidity and mortality. Historically, studies have focused on improving survival outcomes, and recent radiation oncology clinical trials have incorporated HRQOL and cognitive assessments. We are now equipped with a battery of assessments in the radiation oncology clinic, but there is a lack of consensus regarding how to incorporate them in modern clinical practice. Herein, we present validated assessments for BM patients, current recommendations for future clinical studies, and treatment advances that have improved HRQOL and cognitive outcomes for BM patients.

Re-examining popular screening measures in neuro-oncology: MMSE and RBANS.

BACKGROUND: The Mini-Mental Status Examination (MMSE) is routinely used in neuro-oncology clinics to rule out cognitive impairment. However, the MMSE is known to have poor sensitivity to mild cognitive impairment, raising concern regarding its continued use. More comprehensive cognitive screeners are available, such as the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS), and may be better able to assess for cognitive dysfunction. METHODS: This retrospective cross-sectional study compared the relative rates of impairment using the MMSE-2 and RBANS in a sample of neuro-oncology patients (N = 81). A preliminary analysis of the sensitivity and specificity of the MMSE-2 to the level of cognitive impairment identified on the RBANS was conducted; in addition, we examined whether an adjustment of the MMSE-2 cut-off score improved consensus with a positive screening on the RBANS. RESULTS: The MMSE-2 failed to identify over half of the patients with cognitive dysfunction that were identified on the RBANS. Further analysis showed limited sensitivity of the MMSE-2 to the level of impairment detected on the RBANS, and an adjustment of the cut-off score did not improve the sensitivity or specificity of the MMSE-2. CONCLUSIONS: These results provide caution for neuro-oncology clinics using the MMSE. If providers continue to rely on the MMSE to screen for cognitive impairment alone, they may fail to identify individuals with mild cognitive impairments.

The burden of a brain tumor: guiding patient centric care in neuro-oncology.

PURPOSE: Brain tumor patients report an overwhelming sense of uncertainty when navigating the course of their terminal disease. Historically, organizational experts and/or treating physicians have established neuro-oncology programs. However, given the disease burden and incurable nature of current medical treatments, patient-centric care should be prioritized alongside institutional and academic objectives. Integrating patient perspectives into interdisciplinary programmatic development can improve comprehensive care and empower patients to advocate for their own quality healthcare needs. METHODS: Data was derived from four focus groups with adult brain tumor patients (N = 15; Mage = 46 years, 53% female). A trained moderator led each 90-min group and posed semi-structured questions regarding patients' care needs throughout their neuro-oncological disease trajectory. Emphasis was placed on quality of life and psychological distress reduction for both patients and their loved ones. Common themes were identified via thematic content analysis using NVivo software. A high inter-rater reliability (Mkappa = 0.92, range= 0.85-0.93) was achieved. RESULTS: Six distinct themes emerged, where the frequency of each theme ranged from 12.5 to 23.3%. Specifically, patients discussed relational concerns, navigation of interdisciplinary care, neurobehavioral impacts, emotional responses to stressors, existential concerns, and caregiver support. A discussion of themes follows. CONCLUSIONS: It is imperative that we include the patient perspective in the development of neuro-oncology programs; considering the quality of survival in addition to quantity. Neuro-oncology quality care themes identified were relational concerns, navigating interdisciplinary care, neurobehavioral impact, emotional response to stressors, existential concerns, and caregiver support. A paramount concentration for comprehensive neuro-oncology programs must include patients' quality needs.

Managing cancer and living meaningfully (CALM) in adults with malignant glioma: a proof-of-concept phase IIa trial.

BACKGROUND: Managing Cancer and Living Meaningfully (CALM) is an evidence-based, brief, semi-structured psychotherapy designed to help patients with advanced cancer cope with the practical and profound challenges of their illness. However, no study to date has investigated its feasibility, acceptability, and preliminary effectiveness in adults with malignant glioma, despite the well-documented incidence of psychological distress in this vulnerable and underserved population. METHODS: Fourteen patients with glioma and elevated symptoms of depression and/or death anxiety enrolled in the trial: 83% glioblastoma, 75% female, Mage = 56 years (SD = 15.1; range = 27-81). Feasibility was assessed based on established metrics. Acceptability was measured by post-session surveys and post-intervention interviews. Preliminary intervention effects were explored using paired t-tests, comparing psychological distress at baseline and post-intervention. RESULTS: Of the 14 enrolled patients, 12 were evaluable. Nine completed the study (75% retention rate). Three patients withdrew due to substantial disease progression which affected their ability to participate. Participants reported high perceived benefit, and all recommended the program to others. Baseline to post-intervention assessments indicated reductions in death anxiety, generalized anxiety, and depression, and increases in spirituality. Quality of life and fear of cancer recurrence remained stable throughout the study period. CONCLUSIONS: CALM appears feasible for use with adults with malignant glioma. Enrollment and retention rates were high and comparable to psychotherapy trials for patients with advanced cancer. High perceived benefit and reductions in symptoms of death anxiety, generalized anxiety, and depression were reported by participants. These findings are extremely encouraging and support further study of CALM in neuro-oncology. TRIAL REGISTRATION NUMBER: NCT04646213 registered on 11/27/2020.

The Alliance AMBUSH Trial: Rationale and Design.

Unlike medulloblastoma (MB) in children, robust prospective trials have not taken place for older patients due to the low incidence of MB in adults and adolescent and young adults (AYA). Current MB treatment paradigms for older patients have been extrapolated from the pediatric experience even though questions exist about the applicability of these approaches. Clinical and molecular classification of MB now provides better prognostication and is being incorporated in pediatric therapeutic trials. It has been established that genomic alterations leading to activation of the sonic hedgehog (SHH) pathway occur in approximately 60% of MB in patients over the age of 16 years. Within this cohort, protein patched homolog (PTCH) and smoothened (SMO) mutations are commonly found. Among patients whose tumors harbor the SHH molecular signature, it is estimated that over 80% of patients could respond to SHH pathway inhibitors. Given the advances in the understanding of molecular subgroups and the lack of robust clinical data for adult/AYA MB, the Alliance for Clinical Trial in Oncology group developed the AMBUSH trial: Comprehensive Management of AYA and Adult Patients with Medulloblastoma or Pineal Embryonal Tumors with a Randomized Placebo Controlled Phase II Focusing on Sonic Hedgehog Pathway Inhibition in SHH Subgroup Patients (Adult & Adolescent MedulloBlastoma Using Sonic Hedgehog Trial). This trial will enroll patients 18 years of age or older with MB (any molecular subgroup and risk stratification) or pineal embryonal tumor. Patients will be assigned to one of three cohorts: (1) average risk non-SHH-MB, (2) average risk SHH-MB, and (3) high risk MB or pineal embryonal tumors. All patients will receive protocol-directed comprehensive treatment with radiation therapy and chemotherapy. Patients with SHH-MB in cohort 1 will be randomized to a smoothened inhibitor or placebo as maintenance therapy for one year.

Sleep disturbance in primary brain tumor: prevalence, risk factors, and patient preferences.

PURPOSE: Primary brain tumor (PBT) patients report sleep disturbance due to their disease and treatment, yet few studies have utilized validated measures to understand the extent of patients' concerns and preferences for treatment. The purpose of this quality improvement project was to determine the prevalence and associated risk factors of sleep disturbance among PBT patients in our clinic and to evaluate interest in treatment for sleep disturbance. METHODS: PBT patients completed validated measures of sleep disturbance and health during routine neuro-oncology visits. Patients also reported on sleep-related symptom management and their preferences for pharmacological and/or behavioral treatment. RESULTS: Sleep disturbance was common, with 61.5% of PBT patients (N = 119; Mage = 52.60 years; 50% male) reporting poor sleep quality and 21.5% endorsing symptoms of insomnia. Insomnia could be explained by increased fatigue and corticosteroid use; sleep quality could be explained by fatigue. Patients in our clinic with higher grade tumors, significant sleep disturbance, of minority racial/ethnic status, and those not already taking sleep medications were more likely to report their symptoms and were not well-addressed by their medical team. Patients indicated a similar interest in pharmacological and behavioral treatment, warranting the availability of both in our clinic. CONCLUSIONS: Findings indicate a high prevalence of sleep disturbance in PBT patients, highlighting the need for increased screening, monitoring, and treatment in our neuro-oncology clinic. Future research would benefit from assessing the efficacy of behavioral treatments for sleep disturbance in this population.

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.