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BACKGROUND Obtaining post-mortem tissue from pediatric oncology patients is not only critical to research, but studies show that participating in the process can also help grieving families heal. Since 2019, the national Gift from a Child program — a multi-institutional effort to increase the rate of rapid autopsies for pediatric CNS tumor patients — has made significant progress. Collecting high-quality post-mortem tissue has advanced research through cell line generation and genomic analyses. Unfortunately, some autopsy programs temporarily shut down during the COVID-19 pandemic. METHODS We retrospectively reviewed autopsies of four patients treated at Memorial Sloan Kettering (MSK) who underwent limited brain post-mortem examination at Weill Cornell Medicine College (WCMC) from June 2020 to June 2021. We collected patient demographics; DNR status; time of death and procedure; restrictions due to the COVID-19 pandemic; and results of the tissue analysis. Each case presented unique challenges and the timing of securing parental consent varied. RESULTS Three of four specimens were processed within 12 hours of the time of death. Two Spanish-speaking families required interpreters services to obtain consent. In all cases tumor aliquots were flash frozen for further study. All specimens contained viable tumor and cell line generation was successful in one case. All families/caregivers expressed gratitude for the opportunity to participate and for the handling of the procedures. DISCUSSION Despite the sensitive nature of these cases, clinicians should offer the option of a rapid autopsy to caregivers of pediatric patients based on the scientific need and the positive effect it has on grieving families. This paper outlines the logistical efforts required for these donations to take place and provides a framework for providers to offer rapid autopsy as an option for families through this program.

INTRODUCTION Quality of life (QOL) should be included among the important outcomes of brain tumor treatment. QOL is often reduced to a measure of treatment tolerability, resulting in a lack of understanding of how patients experience this phenomenon. There is also limited knowledge surrounding the meaning of QOL for family care partners. The research (in progress) aims to explore the meaning of lived experience of QOL during treatment for glioblastoma (GBM) for both patients and their primary care partners. It will also examine similarities and differences in QOL perceptions within patient-care partner dyads. METHODS Using a phenomenological approach, this study is recruiting patients receiving treatment for GBM and their care partners. Participants complete a timeline depicting significant events impacting QOL from the time of the patient’s diagnosis to the present. They then complete an individual, unstructured interview describing their experience of QOL. Interviews are recorded and transcribed. The research team reviews and completes a thematic analysis on transcripts. RESULTS Numerous themes are emerging from the data. One theme among patients is: Feeling Uncertain About the Future. Patients discussed feeling uncertain about their prognosis during their course of treatment. They talked about the need to adjust to multiple changes in their lives over time. This uncertainty extended to concern for their QOL in the future. One theme among care partners is: Challenges in Relationship with Spouse. Care partners reported relationship conflict stemming from both personality changes in their spouse and role changes resulting in increased responsibilities for the care partner. CONCLUSION This study is providing insight into the meaning and experience of QOL for patients undergoing treatment for GBM, along with meaning and experience of QOL for their care partners. The findings will have implications for clinical practice and generate insights for future research.

OBJECTIVE To identify the trend of distress over time and whether palliative care (PC) referral and visit affected distress level in glioblastoma (GBM) patients. BACKGROUND GBM patients experience significant distress due to their prognosis and neurologic involvement. All subjects in the neuro-oncology clinic at our institution routinely receive the Patient Health Questionnaire-4 (PHQ4) which is a validated screening tool that comprises a section for generalized anxiety disorder (GAD2) and a depression screen (PHQ2). DESIGN This prospective study was approved by the institutional review board. GBM patients who started radiation therapy on 1/1/2019 or later were included. Patients with a GAD2 or PHQ2 of 3 or above were categorized as present for anxiety or depression. A logistic mixed-effects model was used to test the trend of anxiety or depression over time and the impact of PC referral and visit. RESULT 131 PHQ4 questionnaires from 39 newly diagnosed GBM patients (mean age: 59.9yrs ± 15.0; 23M/16F) at the pre-radiation, post radiation and at least every 2 months thereafter were reviewed. Before radiation, 54.8% of patients reported anxiety, higher than at 1-month post radiation (23.5%), 2-3 months (41.4%), 4-6 months (20.0%), and after 6 months (25.0%). This temporal trend is significant (P = 0.0385) after adjusting for patient characteristics such as age, gender and performance status. The proportions of anxiety were not different among visits without PC referral (23.7%), with PC referral and no PC visit (42.4%), and with PC visit (32.4%, P = 0.64). We did not identify a similar temporal trend in depression. CONCLUSION Our data suggests that anxiety is more prevalent than depression in this cohort. This study identifies subjects to be at a greatest likelihood of experiencing anxiety at the pre-radiation time point. Focused interventions at this time point may help improve the patient’s overall quality of life.

BACKGROUND Chemotherapy-induced peripheral neuropathy (CIPN) is a common and serious consequence of cancer treatment that, for up to 30% of patients, persists beyond six months of completing chemotherapy. Scrambler therapy (ST) is a therapeutic modality with emerging evidence supporting its ability to diminish CIPN symptoms. METHODS Data was from a convenience sample of 24 CIPN patients (with symptoms between 1-240 months after platinum-based, taxane, or combination chemotherapy) completing 10 sessions of ST using the Calmare® device in the City of Hope Outpatient Physical Therapy Department. Patients were treated for ~45 minutes per session over 10 sessions. Patients received a standardized assessment pre- and post ST that included: EORTC chemotherapy-induced peripheral neuropathy questionnaire (QLQ-CIPN20), mono-filament testing, pain intensity numerical rating scale, numbness scale, extensor hallicus longus strength, Timed Up and Go, Romberg, and single leg balance. RESULTS Regardless of length of symptoms, significant changes were seen in post-treatment assessment of quality of life as measured by the QLQ-CIPN-20 and numbness scale. Post-treatment QLQ-CIPN-20 total scores decreased by an average of 7.1 points (n= 24, p< .01). Numbness in the left lower extremity decreased by an average of 1 point of the 0-4 point scale (n=24, p=.0007) and 1.09 points on the right lower extremity (n=24, p < .0004). There was a trend towards improvements in pain, monofilament testing, single leg balance, and Romberg test, though they did not reach a level of significance. Surprisingly, only 3 of 24 patients reported pain related to their CIPN at the start of treatment. CONCLUSION For patients with CIPN, scrambler therapy improves numbness and improves quality of life measures. This suggests an important role for this treatment modality in cancer patients suffering from this debilitating condition.

BACKGROUND In BIOMARK trial, patients with newly diagnosed glioblastoma were treated with standard chemoradiotherapy combined with first-line bevacizumab; a subset of patients continued bevacizumab beyond progression (BBP). Neurocognitive function (NCF), symptom burden, and health-related quality of life (HRQoL) were examined as secondary endpoints. PATIENTS AND METHODS In the primary protocol, newly diagnosed glioblastoma patients aged 20-75 received standard 6-week radiotherapy combined with temozolomide and bevacizumab followed by 4-week cycles of temozolomide plus bevacizumab, and then 2-3-week cycles of bevacizumab monotherapy. Upon recurrence, patients were subjected to the secondary protocol with 2-3-week cycles of bevacizumab monotherapy with or without other chemotherapeutic agents. NCF tests (Hopkins verbal learning test-revised, trail making test, and controlled oral word association), EORTC QLQ-C30/BN20, and MDASI-BT were completed by the patients. Time to deterioration (TTD) was defined as the time from randomization until a pre-specified change from baseline without further improvement or death. The Kaplan-Meier method and the log-rank test were used to assess TTD for each subscale of the above tests. RESULTS Overall, 94 patients were enrolled in the study. Analyses were based on the full analysis set cohort (N=90), excluding non-glioblastoma diagnosis by central review. The median overall survival (OS) and progression-free survival (PFS) were 25.0 and 14.9 months, respectively. Baseline HRQoL and symptom burden subscales (emotional functioning, symptom severity score, affective factor, and focal factor) were significantly associated with PFS. The median TTD was 8.7, 7.5, 8.1 months for global health status/QoL, symptom severity score, interference score, respectively. Among patients who experienced recurrence, disease progression was apparently preceded by deterioration in terms of symptom burden. CONCLUSIONS Detailed analysis of HRQoL and symptom burden may aid care of glioblastoma patients throughout the disease trajectory.

Effective therapies are needed for the treatment of patients with HER2-positive MBC who develop brain metastases. In the open-label, phase II PATRICIA study (NCT02536339), 40 patients with HER2-positive MBC with CNS metastases and CNS progression post-radiotherapy (median age 48 years [range, 34–69]; prior CNS treatment [whole brain radiotherapy 71%, stereotactic radiosurgery 59%, both 31%]) were enrolled to receive pertuzumab plus high-dose trastuzumab (6-mg/kg weekly) until CNS or systemic disease progression or unacceptable toxicity. Following a median (range) treatment duration of 4.5 (0.3–37.3) months, the CNS-confirmed objective response rate per Response Assessment in Neuro-Oncology Brain Metastases criteria (primary endpoint) was 11% (95% confidence interval: 3.03, 25.42), and the clinical benefit rate at 4 months was 68%, indicating sustained clinical stability. Patient-reported outcomes (PROs) were evaluated using the MD Anderson Symptom Inventory-Brain Tumor (MDASI-BT), which includes sub-scales for symptom severity (average of 13 core symptom and 9 brain-tumor specific items) and symptom interference (average of 6 interference-with-life items representing overall symptom distress). Among 36 patients included in the PRO analyses, mean (standard deviation [SD]) symptom severity scores at baseline and weeks 12 and 28 were 1.65 (1.62), 2.24 (2.14), and 1.94 (2.55), respectively. Mean (SD) symptom interference scores at baseline and weeks 12 and 28 were 2.51 (2.63), 2.81 (3.39), and 1.76 (2.43), respectively. Mean (SD) changes in symptom severity and interferences scores from baseline to week 12 were 0.34 (1.54) and 0.33 (3.08), respectively. On average, patients who did not achieve stable disease or better in the CNS following treatment had worsened symptom severity and symptom interference scores over 12 weeks, while those with stable disease or better in the CNS exhibited stable or improving scores. Pertuzumab plus high-dose trastuzumab provided clinical benefit to the majority (68%) of patients in PATRICIA, without a decrement in quality of life.

As cancer treatment has advanced, quality of life (QoL) has become a significant consideration in patient and survivor care. The 2005 Institute of Medicine Cancer Survivorship Care Planning guide requires the inclusion of information on the possible effects of cancer on marital/partner relationship and sexual functioning, among other factors related to QoL. The purpose of this study is to explore the rates and types of sexual dysfunction among brain cancer patients. Patients were recruited from a neuro-oncology practice and given a QoL questionnaire (FACT-Br). Women were given the Female Sexual Function Index (FSFI). Men were given scales to assess premature ejaculation (PE), erectile dysfunction (ED), and Peyronie’s disease. In addition, information about site and type of tumor and treatment (surgery, radiation, chemotherapy) was collected. Descriptive statistics as well as T-tests and ANOVAs were used to analyze the data. Data were collected from 50 patients. The most common form of brain tumor in this sample was glioblastoma. The frontal lobe was the most common location of tumors. There was significantly more sexual dysfunction than previously reported, with 66% of the sexually active women meeting criteria for total FSFI. Of the men who were sexually active, 60% reported some ED and 80% reported PE. QoL measures were correlated with sexual dysfunction. Our capacity to address sexual function concerns of patients is dependent on our understanding the types of difficulties encountered. This study provides preliminary information about the effect of brain cancer diagnosis and treatment on a major contributor to QoL in these patients.

BACKGROUND Posttraumatic Growth (PTG) refers to the positive psychological change following a trauma and may include a heightened appreciation for life, greater value in meaningful relationships, and/ or spiritual development. A brain cancer diagnosis may be experienced as a traumatic event given the high risk of tumor progression, lack of curative treatments, and ultimately unexpected disheartening prognosis; however, there is limited research on PTG in neuro-oncology. The aim of this study was to determine the profile of PTG in patients diagnosed with primary brain tumors (PBTs). METHODS Patients with PBTs (N = 53, Mage = 48.17, 52.8% male) completed the Post Traumatic Growth Inventory (PTGI) during routine neuro-oncology clinic visits. Descriptive statistics and frequencies for the five factors of the PTGI and PTGI total were calculated. RESULTS PTG was evident across all domains with the most growth reported in appreciation for life and the least growth in new possibilities. Most patients endorsed low levels of growth across the five factors; 29-49% of patients endorse moderate-to-high severity in at least one PTG domain. Lastly, the average total score (M = 46.10) of this sample met the established cutoff for moderate-to-high PTG (> 46). CONCLUSIONS The results suggest that patients with PBTs may perceive positive psychological growth following the traumatic event of a brain tumor diagnosis. Specifically, patients may experience a greater appreciation for life but relatively less growth in new possibilities, perhaps due to the poor prognosis of many PBTs. In non-CNS cancer populations, patients with higher PTG reported better quality of life and lower distress. Further research to expand our knowledge of PTG and the associated factors, including the demographic, medical, and psychological correlates, will better equip providers to promote positive change in PBT patients.

INTRODUCTION Symptoms of raised intracranial pressure (ICP) in recurrent or progressive high-grade glioma (HGG) generally require corticosteroid treatment, often causing toxicity with variable effects on reversing ICP symptoms. Acetazolamide reduces ICP in other clinical settings including case series in glioma. AIM To explore whether addition of oral acetazolamide enables safe dexamethasone dose reduction in management of raised ICP in recurrent and/or progressive HGG. METHODS Participants had recurrent, progressive and/or persistent residual HGG requiring recommencement of dexamethasone, dose increase or dexamethasone dependency; prior/current bevacizumab was an exclusion. Eligible participants were randomised 1:1 to acetazolamide 250mg twice daily or placebo for 8 weeks. Standardised protocols were used for dexamethasone dose changes in both arms, with planned dose decrease from day 5 once ICP symptoms were stable. The primary endpoint was a composite of dexamethasone dose reduction and stability of performance status. Secondary endpoints included toxicity and feasibility (accrual and compliance). RESULTS Thirty participants of a planned sample of 84 were enrolled (mean age 58 y (32-89)) from 7 Australian sites. The mean baseline dexamethasone dose was 6.2mg (4-16mg). Mean duration on treatment was 38 days (4-57) in placebo group and 31 days (3-60) in acetazolamide group, with 9 participants (30%) completing all study treatment (6 placebo, 3 acetazolamide). Study withdrawal was due to adverse events (n=6 (1 placebo, 5 acetazolamide)) and disease progression (n=6 (3 per arm)). Four participants (13%) (2 per arm) were stable responders meeting the primary endpoint criteria (≥50% corticosteroid dose reduction from baseline by 28 days maintained for 7 days, and no deterioration in performance status). Ten participants experienced a total of 13 serious adverse events (acetazolamide arm: 5 participants (33%), 6 events, 2 related). DISCUSSION The addition of acetazolamide did not facilitate dexamethasone reduction. The study closed early due to poor accrual and increasing availability of bevacizumab.

BACKGROUND Diffuse low-grade gliomas (DLGGs, WHO Grade II gliomas) comprise 13-16% of all primary brain tumors. Although there has been a paradigmatic shift toward upfront maximal safe resection (MSR) for these heterogeneous tumors, it is important to consider the health economic perspective of this approach, compared with the traditional watch-and-wait approach, as well. OBJECTIVE To conduct a systematic review of the health economic literature on the range of DLGG management options. METHODS Following the PRISMA guidelines, Medline, EMBASE, The Central Registration Depository (CRD), EconPapers, and EconLit were searched for ‘cost-effectiveness’, ‘health economics’ and ‘Low-grade glioma’. Grade I tumors were excluded. Pre-specified variables were extracted. All currencies were converted to USD. RESULTS Among 258 abstracts, 28 were selected for full-text screening, and 3 were selected for this review. A European study evaluated the role of intraoperative electrical stimulation (IES). Although IES was associated with higher direct costs upfront ($38,662.70 vs $32,116.10), this was offset by less long-term indirect costs ($12,222.30 vs $31,927.10; p=0.023), greater QALY (4.8 vs 2.9; p=0.001), and an incremental cost-effectiveness ratio (ICER) of $1,842.50. Another study evaluated the cost-effectiveness of adjuvant PCV+RT vs RT alone, finding greater QALY for the former (9.94 vs 5.17) and an ICER of $10,186 per QALY gained. A third study evaluated the cost-effectiveness of adding 18F-fluoroethyl-L-tyrosine (FET) PET to MRI, compared to preoperative MRI alone. This resulted in an ICER of $7,193.58 for the baseline scenario (lowest reimbursement) and $10,236.12 for the morbidity-adjusted reimbursement rate scenario (highest reimbursement). There were no studies evaluating the health economics of maximal upfront surgical resection to the watch-and-wait approach. CONCLUSION We found a limited number of studies reporting on the health economics of DLGGs. Given the paradigmatic transition toward more aggressive upfront surgical resection, DLGG-specific health economic analyses are underway.

Since 2009, Washington State has had a “Death with Dignity” (DWD) process whereby people with a terminal illness may legally obtain a prescription for medications that will end their life. Patients initiate a voluntary request from two physicians certifying they have a prognosis < 6 months, are aware of other palliative care options, and have capacity without the comorbidity of a psychiatric diagnosis. Since 2015, over 200 people annually have used the DWD process in Washington. Other papers have described the characteristics of people using DWD with a diagnosis of cancer or amyotrophic lateral sclerosis (ALS) but none have specifically looked at patients with brain tumors (BT) who used DWD. We describe 20 people with BT who accessed DWD since 2015 at our center. Median age at the time of death was 51 (range 38-79) and 75% were men. Glioblastoma was the diagnosis in 10 (50%), anaplastic glioma in 8 (40%), grade II astrocytoma in 1, and a presumed high-grade glioma by imaging in 1. Median Karnofsky Performance Status (KPS) was 90 at diagnosis (range 50-100) and 70 at DWD request (range 40-90). Standard radiation (RT) and chemotherapy was used by 17 (85%) prior to DWD request, while 3 patients (15%, ages 70-79, KPS 50-90) requested DWD immediately after diagnosis and did not undergo further treatment. Pain was present in 4 patients (20%), 2 using opioids (10%). Six patients (30%) continued tumor treatments after approval for DWD. Median OS was 22 months (range 2-285) and 24 months excluding patients who declined treatment (range 8-285). Most glioma patients in our cohort requested DWD after undergoing chemoradiation, pain was uncommon and rarely severe, and survival from diagnosis was comparable to standard therapy. As access to medical assistance in dying continues, further research is needed on its utilization for people with brain tumors.

The aim of this study is to evaluate and assess the impact of baseline quality of life (QOL) in adult patients with central nervous system (CNS) tumours treated with pencil beam proton therapy (PT) seen consecutively at India’s first proton therapy centre. Data sets of 50 consecutive adult patients with histologically proven brain neoplasms (both primary and recurrent) who were planned for proton therapy at our centre were during one full calendar year were considered for this study. The study included detailed neurological assessment, evaluation of QOL using EORTC questionnaire (QLQ-C30) and specific Brain Cancer module (BN20). In the present analysis, QOL scores before starting adjuvant treatment were measured and impact of patient and tumour related factors were analysed. Baseline global QOL data of all patients (available in 50) was 58.3 which is relatively low including in all histological tumour types. Physical function, role function, emotion function, cognitive and social function scores were 77.9, 80, 78.5, 80.3, 69.3 (higher values better), respectively. Domains of visual disorder, motor deficit, communication deficit, headache, seizures and drowsiness scores were 21.5, 20.3, 32.3, 31, 20.4, 32.6 and 14.5 (lower values better), respectively. Elderly patients (> 50 years) had poorer global score (p < 0.05). Patients with lower performance status (KPS < 70) had a lower global QOL (KPS > or = 80 vs. < or= 70; 42 vs. 75; p < 0.05) including in all histological types of high-grade gliomas (HGG) (HGG vs. LGG; 67 vs. 59; p < 0.05). Patients undergoing re-irradiation had poorer global score as compared to ones who had not received any radiation previously (p < 0.05). Patients with malignant, recurrent tumours, poor performance status and patients who had previously been irradiated had significantly lower QOL scores even before starting adjuvant treatment.

BACKGROUND Glioblastoma (GBM) patients fall within NCCN and ASCO guidelines for early palliative care (PC). However, data suggests they are less likely than systemic cancers to be referred to PC and often later in their illness. This results in potential missed opportunities, both for improving symptom control and earlier completion of important tasks, like advance care planning. Data on how to best incorporate comprehensive PC into routine neuro-oncology (NO) patient care is needed. METHODS We piloted a program embedding a PC physician into UCSF’s NO clinic one half-day per week. NO physicians were encouraged to refer GBM patients within 3 months of diagnosis and other patients with PC needs. PC visits were offered in-person, by telemedicine, or at home. PC physician and NO social worker made joint visits when possible; chaplaincy support was available by telemedicine. Data was collected using Palliative Care Quality Network (PCQN) database and patient satisfaction survey. RESULTS To date, 37 patients have been referred resulting in 103 visits (average 2.8 visits/person): 25% in-person; 68% telemedicine; 6% at home. PC physician and NO social worker met jointly with 46% visits. Median age was 58 years, 41% female, 81% non-Hispanic white, 84% GBM, median 9 months from diagnosis, and 73% receiving first line treatment. Interventions addressed across visits: 94% non-pain symptoms, 76% psychosocial needs; 71% pain; and 70% GOC. Results from satisfaction survey demonstrated 79% would recommend seeing PC embedded in NO to others and highest benefits were attention to practical considerations to staying healthy at home, discussing preferences for future medical care, and help with coping. CONCLUSIONS Embedding PC into NO clinics is a unique model for addressing symptoms and GOC early, is well received by patients and caregivers, and provides opportunities for collaboration and PC physicians to specialize in caring for needs of NO patients.

BACKGROUND Patients with high-grade gliomas (HGG) face unique challenges toward the end of life (EoL), given their aggressive disease trajectory and progressive neurologic deterioration. The discipline of supportive care (SC) has been beneficial in improving quality of EoL care in patients with non-CNS cancers, however data on its contribution to EoL care in patients with HGG is lacking. METHODS We retrospectively reviewed charts of MDA patients from 2010-2017 to compare the demographic factors and clinical and quantitative EoL outcomes between patients with HGG--who were either referred (n=54) or not referred (n=85) to SC--and patients with non-CNS cancers who were referred to SC (n=72). A composite score for poor EoL quality outcomes was used with the following variables: death in hospital, chemotherapy within 14d of death, ≥2 hospitalizations, ≥2 ER visits, ICU admission and >14 days hospitalization within the last 30 days of life. Patients were eligible for SC based on poor/declining performance status, < 6 month prognosis, or recurrent GBM. RESULTS Patients with HGG had similar EoL quality regardless of SC referral, and these patients in general had better EoL quality than patients with non-CNS cancers (p=0.005). EoL quality was significantly worse in HGG patients who received late versus early SC referrals (p=0.0066). Both weakness (OR=1.27, p=0.0289) and number of disease progressions (OR=2.618, p=0.001) at the time of eligibility for SC were predictive of poorer quality of EOL. The majority of HGG patients (61.2%) eligible for SC were not referred. CONCLUSIONS EoL outcomes in patients with malignant gliomas are overall better than those of patients with non-CNS cancer, however certain clinical features and later SC referral remain significantly associated with poorer EoL quality. Our data suggest that the role of SC in improving EoL outcomes in our patient population warrants further evaluation.

BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

OBJECTIVE To explore the effect of group medical games on the hospitalization adaptability of pediatric patients with neuro tumor. METHODS pediatric patients with neuro tumor (age:6 to 13 years) who were treated in hospital from June to December 2019 and were hospitalized for 1 month to 2 months. 29 pediatric patients(mean age:9y) were selected as the control group and treated as usual; 26 pediatric patients(meanage:8y) were selected as the experimental group for group therapeutic play intervention. Interventions last Monday, Wednesday and Friday of each week, with an average duration of one hour. Group medical play include: medical picture book education, medical preview game, emotional games, social table games. Two groups completed self-made questionnaires at the time of admission and two weeks after admission, including: diet, sleep, compliance, and social status, hospital adaptation and other related issues, two groups completed a satisfaction questionnaire after two weeks of admission, recorded analysis and compared the difference of questionnaire data and satisfaction of the two groups of pediatric patients. RESULTS There was no statistical difference in age and sex between the two groups, and there was no significant difference in baseline RESULTS: The re-test results showed that the experimental group was significantly better than the control group in terms of social status, hospital adaptation, compliance and family satisfaction(p＜0.05). CONCLUSION Group medical games can effectively improve the adaptability, compliance and family satisfaction of pediatric with neuro tumor.

BACKGROUND Patients with GBM and their caregivers report impaired quality of life (QOL). Distress, fatigue and anxiety are common. Mindfulness-based interventions (MBIs) can help reduce anxiety and depression and improve QOL in patients with chronic diseases and other types of cancer, but have not been well studied in patients with brain tumors and their caregivers. The feasibility and acceptability of an MBI in this population is unknown. METHODS Using the Consolidated Framework for Implementation Research (CFIR), we developed a 15-minute survey for patients with brain tumors and their caregivers to assess attitudes and beliefs toward a MBI. As this study is formative, we chose to assess select domains including intervention characteristics, characteristics of individuals (knowledge and beliefs), and the outer setting (patient needs and resources). Questions were adapted from the literature to reflect constructs from each domain or created by the authors. The survey was published using Qualtrics, an online survey platform. We partnered with OurBrainBank to distribute the survey to key stakeholders using social media platforms. OurBrainBank is a patient-led movement centered around a symptom-tracking app for patients and carers, participation in patient-driven research, improved access to clinical trials, and patient advocacy. RESULTS The survey was published on 5/29/20. In one week, we received 14 responses. 7/14 identified as having a brain tumor or being the primary caregiver for someone with a brain tumor. Of these, 5/7 indicated they would be possibly or definitely interested in participating in a research study testing a MBI. Over the next 5 months, we anticipate 200 people will complete the survey. We will analyze the results using descriptive statistics. DISCUSSION Technology can aid in stakeholder engagement which is critical to intervention development. Results from this survey will be used to develop a MBI tailored to patients with GBM and their caregivers.

BACKGROUND Primary CNS tumors are associated with uncertainty likely contributing to mood disturbance that is common throughout the disease trajectory. The intersection of the COVID-19 pandemic with a CNS tumor diagnosis may further impact the anxiety/depression experienced in this population. This study assessed key anxiety/depression symptoms in patients with CNS tumors prior to and during the COVID year. METHODS Patient reported outcomes (PROs), including the PROMIS Anxiety and Depression Short Forms and EQ-5D-3L, were collected at the time of clinical or telehealth evaluation from the COVID year (March 2020-February 2021) and were compared to assessments through February 2020 (a NOB-normative sample), reflecting what we would typically see in our regular clinic evaluations. RESULTS The COVID sample (N = 178) was primarily White (82%), male (55%), median age of 45 (range 18–79), and KPS ³ 90 (50%). The majority had high grade (70%) brain (83%) tumors with ³ 1 prior recurrence (60%) and 25% were on active treatment. Visits were primarily conducted via telehealth (64%) and 20% had progression at assessment. Compared to the NOB-normative sample, patients reported significantly higher depression scores (moderate-severe, 17% vs. 12%, p < 0.05), but not anxiety (18% vs. 16%). Eleven percent reported both moderate-severe anxiety and depressive symptoms (8% pre-COVID). Overall health assessed by the EQ-5D-3L was similar to the normative sample in all dimensions, apart from impact of moderate/extreme mood disturbance, which was more prevalent in the COVID year (53% vs. 43%, p < 0.05%). CONCLUSION Patients with CNS tumors are at risk for significant symptoms of depression and anxiety; this risk was heightened during the COVID year. Further evaluation of clinical factors associated with risk are underway. These findings highlight the need for assessments and interventions that can be administered via telehealth to address the mental health needs of this vulnerable population. Radiobiology

Primary brain tumor (PBT) patients experience high symptom burden and functional limitations, which may be impacted by the economic strain and mood disturbance during the COVID-19 pandemic. We assessed financial toxicity and associated patient reported outcomes (PROs) after one year of lockdown in a cohort of PBT patients. Patient and disease characteristics and PROs including FACIT-COST, MDASI-Brain Tumor, PROMIS-Anxiety/Depression short forms, and EQ-5D-3L were collected from 7/2020 to 5/2021 from participants in our Natural History Study. Descriptive statistics, Pearson correlations, and independent samples t-tests evaluated PRO relationships. The cohort included 112 PBT patients: 57% male, 87% white, mean age = 47 (range 25 – 80). Majority were married (65%), completed ≥ 4-year college degree (73%), earned annual family income ≥ $50,000 (68%) and living with a high-grade glioma (72%) complicated by recurrence (51%). Using FACIT-COST, 56% reported some financial hardship due to illness with a mean FACIT-COST of 28.3 (SD = 11.3, range: 0 - 44). Half of patients reported feeling moderately to extremely anxious or depressed. Non-Whites and Hispanics as well as those not currently working reported worse financial toxicity compared to White non-Hispanics and individuals currently working (21.4 vs 29.8 and 25.7 vs 30.4, respectively). Worse financial toxicity scores strongly correlated with worse overall symptom burden (r = -0.55) and interference (r = -0.42), worse anxiety (r = -0.39) and depression scores (r = -0.44), and worse overall HRQOL scores (r = –0.33)[all p< .01]. This is the first report of FACIT-COST in PBT patients to our knowledge and demonstrates that non-White individuals living with high grade glioma who are not currently working due to their tumor reported worse financial toxicity which was strongly correlated with higher symptom burden and interference with lower HRQOL. Future studies to assess financial toxicity longitudinally and post-pandemic using the FACIT-COST are needed.

BACKGROUND Insomnia is a prevalent consequence of cancer diagnosis and treatment. In primary brain tumor (PBT) patients specifically, insomnia has been rated as one of the most severe symptoms and linked with other negative side effects, such as increased fatigue and emotional distress. Despite these findings, research has consistently omitted PBT patients in understanding the detailed effects and treatment for insomnia. METHODS Adult PBT patients (N=74) completed anonymous surveys at routine neuro-oncology appointments at an NCI-designated academic medical center. The surveys included validated measures of insomnia (ISI & PSQI), fatigue (BFI), and other original items (e.g., How would you describe your feelings towards medication treatment for insomnia?). The current investigation aimed to assess: 1) the prevalence of clinically elevated symptoms of insomnia, 2) the relationship between sleep disturbance and daytime fatigue and distress, and 3) patients’ preferences for pharmacological and non-pharmacological treatment for insomnia in PBT patients. RESULTS Of the sampled PBT patients, 38% reported significant sleep disturbance as measured by the PSQI. Moreover, 23% endorsed clinically elevated, moderate-severe symptoms of insomnia as measured by the ISI. Excessive worrying (r =.31) and bad dreams (r =.29, p< .05) were both associated, though not predictive of insomnia severity (p >.05). Insomnia symptoms predicted increased fatigue severity, F(1,72) =52.60, β=.65, p< .001, R2 =.42. Of the patients with clinical insomnia, 59% felt that their symptoms were not well-managed by their medical team; 53% expressed interest in pharmacological treatment and 47% in non-pharmacological treatment. CONCLUSIONS The prevalence and consequences of insomnia identified in PBT patients are similar to that of other cancers, yet the majority of PBT patients with insomnia reported their symptoms were poorly managed. Though there was slight preference for pharmacological treatment, the sizeable proportion of those interested in non-pharmacological treatments warrants investigations into such therapies (e.g., CBT-I) in medical settings

The Quality-of-Life in Neurological Disorders (Neuro-QOL) instruments are a practical set of validated tools utilized to measure a core set of health-related quality-of-life parameters that are relevant to patients with neurological disorders. The tools can be completed in approximately 1-minute. The primary objective of this study was to evaluate the feasibility of utilizing the eight-question Neuro-QoL Cognitive Function- Short Form (NCF-SF) tool (v2.0) to assess cognitive outcomes in patients with primary and secondary brain tumors undergoing radiotherapy. Patients completed the NCF-SF at baseline and during follow-up visits. Raw scores were converted to a standardized T-score that has been normalized to have mean score of 50 and standard deviation (SD) of 10. Descriptive statistical analyses were performed to assess the prevalence of baseline cognitive impairment (defined as > 1 SD below the normative mean), and to assess longitudinal changes in Neuro-QOL scores. A minimum clinically important difference (MCID) was defined as a change from baseline of >7.5, based on previously published literature. Ninety-one patients completed NCF-SF at baseline and at least one follow-up visit. The mean baseline score for the study cohort was 49.9 (SD 9.2). Nineteen percent of patients (n=17/91) had impaired function at baseline. Baseline scores did not differ based on tumor type (p=0.79): Glioma/ependymoma 49.6 (n=35); brain metastases 49.1 (n=24); Meningioma/benign 50.7 (n=32). Following radiation, 15% and 22% of patients experienced a MCID decline at 1- (n=60) and 3- months (n=65), respectively. However, 17% and 20% of patients demonstrated a MCID improvement at 1- and 3-months, respectively. In conclusion, this represents the first study to utilize the NCF-SF to measure cognitive function in patients undergoing brain radiotherapy. Use of NCG-SF was feasible, and identified patients with meaningful changes in cognitive function over time. Future clinical trials may consider use of Neuro-QOL to assess patient-perceived cognitive function.

INTRODUCTION Considering the poor prognosis of high-grade gliomas, past studies focusing on the felt experience and supportive care needs of patients concentrated on the end-of-life period. Little is known on these subjects during the initial acute portion of the patient’s journey, from symptom onset, through surgery, to chemoradiation. This period is one of substantial anxiety for patients and their caregivers, and one during which they struggle to comprehend a large amount of information and navigate a complex situation. METHODS Adult patients with a new histopathological diagnosis of high-grade glioma who underwent radiotherapy participated in a semi-structured, face-to-face interview. Different segments of the patient’s journey were explored, with a focus on patient’s emotions, interactions with healthcare providers, satisfaction during the process and access to supports. Descriptive thematic analysis in the tradition of grounded theory was performed. RESULTS Fifteen patients (7 males, age 34-71 years) were interviewed, and four themes emerged from the analysis. First, information conveyed by the medical team was frequently disconnected from patients’ understanding regarding diagnosis and treatment. Second, specific events created a lasting impression that the medical system, and at times medical care providers, lacked empathy. Third, patients’ perceptions of shortcomings within the medical system led to decreased trust, particularly regarding the follow-up process. Finally, although respondents identified multiple inadequacies during their journey, they nonetheless acknowledged the great support and quality of services they received. CONCLUSION This study provides insight into patients’ experiences and perceived shortcomings of the medical system, from the time of presentation until the end of radiotherapy treatment in patients with new diagnosis of high-grade glioma. These findings should influence clinicians’ attitudes and guide systematic changes including delivery of information and the referral process.

BACKGROUND Caregivers of patients with newly diagnosed malignant gliomas experience high rates of psychological distress. However, the factors associated with distress in this population have not been well described. We sought to evaluate patient-related, caregiver-related and tumor-related factors associated with depression and anxiety in this caregiver population. METHODS We conducted a prospective study in patients with newly diagnosed malignant gliomas and their caregivers, collecting self-report data within 6 weeks of diagnosis. Patients’ and caregivers’ depression and anxiety were assessed using the Hospital Anxiety and Depression Scale, with subscale scores >7 considered clinically significant. Information about the tumor location and molecular features was extracted from the medical record. We used univariate and multivariate linear models to evaluate the association between caregiver anxiety and depression at baseline and specific caregiver-, patient- and tumor-related factors. RESULTS We enrolled 61 patient-caregiver dyads in this study. 26.2% (16/61) of caregivers had significant depression symptoms, and 47.5% (29/61) had significant anxiety. In the multivariable analysis, factors associated with higher caregiver depression score included younger caregiver age (< 65 years old; B=4.24, p=0.0002), left-sided tumor location (B=1.98, p=0.030), IDH wild-type tumor status (B=3.44, p=0.0008) and patient anxiety (B=2.28, p=0.017). Factors associated with higher caregiver anxiety were younger caregiver age (B=2.47, p=0.089) and left-sided tumor location (B=4.23, p=0.001). CONCLUSIONS Younger caregiver age and caring for a patient with a tumor on the left side of the brain were associated with worse caregiver depression and anxiety. Higher caregiver depression was correlated with caregivers whose loved one had significant anxiety or had an IDH wild-type tumor. Understanding the factors associated with caregiver anxiety and depression may guide neuro-oncology clinicians in identifying caregivers who may be at an increased risk for psychological distress at the time of their loved one’s diagnosis, allowing for earlier initiation of support services for these caregivers.

Isocitrate dehydrogenase 1 (IDH) mutation has important clinical prognostic value in glioma patients conferring improved survival and better neurocognitive function (NCF) compared to IDH wild type (IDH-WT) patients. It is not known whether IDH mutation status has an impact on patient reported outcomes (PRO). The goal of this single institution retrospective study was to examine the impact of IDH-mutation status on PRO’s in patients who also completed neuropsychological evaluation. METHODS Out of 101 glioma patients referred for neuropsychological evaluation between 2018–2019, 73 completed the Functional Assessment of Cancer Therapy-Brain (FACT-Br; non-completion due to severe cognitive impairment, poor English). In addition to the total score, the FACT-Br includes 5 subscales of wellbeing (Physical, Social, Emotional, Functional, and Brain specific symptoms). 69 patients completed the Beck Depression Inventory (BDI) and 61 completed the Beck Anxiety Inventory (BAI). Self-reported symptoms were compared between those with IDH-Mut vs IDH-WT by ANOVA. RESULTS Diagnoses included glioblastoma (20), diffuse astrocytoma grade II/III (29) and oligodendroglioma grade II/III (24). 29/73 (40%) patients were IDH-mut. FACT-Br total scores did not differ between IDH-WT and IDH-Mut glioma patients (F=2.685; p=ns). Separate analyses of the 5 FACT-Br subscales showed that only the emotional functioning subscale differed significantly, with IDH-Mut patients reporting better emotional functioning than IDH-WT patients (F=7.4; p< 0.05). BDI and BAI scores did not differ by group (F= 2.2 and 1.9, respectively; p=NS). CONCLUSIONS IDH mutation was related to patient reported emotional status on the FACT-Br in this mixed clinical sample of glioma patients. Analysis is complicated by the heterogeneity of the sample and retrospective nature of the study. Routine inclusion of PRO’s as standard of care may allow a more comprehensive understanding of the impact of IDH throughout the natural history of glioma.

OBJECTIVE There is no validated model for delivering palliative care (PC) in the glioblastoma (GBM) population. The primary objectives were to assess the feasibility and determine the acceptability of a time-based model of integrated specialty PC to patients and providers. Secondary objectives were to estimate the impact on healthcare utilization and quality of life (QoL) compared to historical controls. METHODS We consented and referred patients to PC at their initial Neuro-Oncology consultation between 4/2018 and 5/2019. We conducted QoL assessments (NCCN Distress Tool; Functional Assessment of Cancer Therapy-Brain (FACT-BR); Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F); Epworth Sleepiness Scale (ESS)) at (1) baseline (2) immediately after chemoradiation, and (3) 6 months following chemoradiation. Ongoing PC follow-up was at the discretion of the PC provider. We administered the Edmonton Symptom Assessment System (ESAS) before and after PC visits. We measured patient and referring provider satisfaction using FAMCARE-16 and a PC departmental survey, respectively. RESULTS We did not meet our goal enrollment of 50 patients. 32 were offered participation, 12 consented and 8 attended at least one PC visit. The mean number of PC visits was 1.6. Mean age was 62 (42–79). 75% had a KPS ≥80. Of those that did not complete the study, 2 died and 5 either withdrew consent or declined further visits. At baseline, 91.7 % had a NCCN distress score ≥4. Patients were overall satisfied with the intervention. CONCLUSION Introduction of specialty PC at the time of GBM diagnosis is challenging. Participants reported their experience as overall positive. Results from referring providers are pending. Due to low-enrollment we did not pursue further statistical comparisons regarding healthcare utilization compared to historical controls.

BACKGROUND: Health-related quality of life (HRQoL) is an important outcome in glioma research, reflecting the impact of disease and treatment on a patient’s functioning and wellbeing. Data on changes in HRQoL scores provide important information for clinical decision-making, but different analytical methods may lead to different interpretations of the impact of treatment on HRQoL. This study aimed to study whether different methods to evaluate change in HRQoL result in different interpretations. Methods: HRQoL and sociodemographical/clinical data from 15 randomized clinical trials were combined. Change in HRQoL scores was analyzed: (1)at the group level, comparing mean changes in scale/item scores between treatment arms over time, (2)at the patient level per scale/item by calculating the percentage of patients that deteriorated, improved or remained stable on a scale/item per scale/item, and (3)at the individual patient level combining all scales/items. Results: Data were available for 3727 patients. At the group scale/item level (method 1), only the item ‘hair loss’ showed a significant and clinically relevant change (i.e. ≥10 points) over time, whereas change scores on the other scales/items showed a statistically significant change only (all p< .001, range in change score:0.1–6.2). Analyses on the patient level per scale (method 2) indicated that, while a large proportion of patients had stable HRQoL over time (range:27–84%), many patients deteriorated (range:6–43%) or improved (range:8–32%) on a specific scale/item. At the individual patient level (method 3), the majority of patients (86%) showed both deterioration and improvement, while only 1% of the patients remained stable on all scales. Conclusion: Different analytical methods of changes in HRQoL result in distinct interpretations of treatment effects, all of which may be relevant for clinical decision-making. Additional information about the joint impact of treatment on all outcomes may help patients and physicians to make the best treatment decision.

BACKGROUND Growth problems are common in patients with intracranial germ cell tumours. However, the characteristics were not fully profiled, especially when stratified by orientation. Thus, we conducted this study. METHODS Patients newly diagnosed, ≤19 years, with confirmed pathology or tumour markers elevation were included. Patients with bifocal lesions or lost to follow-up were excluded. WHO AnthroPlus software, which was developed for the global application of the WHO Reference 2007 to monitor growth in children aged 5–19 years, was used. Based on age, sex, and height, the Z-scores of height(ZSOH) were calculated. A ZSOH< -1 indicates a slower physical development than that in peers, while a ZSOH >1 indicates faster growth than peers. RESULTS Among the 200 included patients, 75 had primary lesions originating from the sellar/suprasellar region(S/SS), 73 from the pineal gland(PG), and 52 from the basal ganglia/thalamus region(BG/T). At initial diagnosis, the median ZSOH in S/SS was -0.66(-3.76–3.05), which was significantly lower than that in PG(0.76,-2.23–5.19) and BG/T(0.64,-3.05–5.32)(p=0.001). However, the difference in ZSOH between PG and BG/T was comparable(p=0.61). In patients with S/SS who had paired data(n=36), the median ZSOH decreased from -0.22(-3.76–3.05) at diagnosis to -1.01(-3.42–1.89) at the last follow-up(p=0.001). The median ZSOHs in PG(n=38) and BG/T(n=28) remained in the normal range at last follow-up although the changes were statistically significant(p< 0.001). Linear regression analysis showed that, in S/SS, age at diagnosis(β=0.115,p=0.033), sex(β=1.337,p=0.002), radiotherapy dose(β=-0.061,p=0.007), and number of chemotherapy cycles(β=-0.177,p=0.038) were correlated with changes in median ZSOH. In BG/T, only the radiotherapy dose(β=-0.064,p=0.041) and number of chemotherapy cycles(β=-0.551,p=0.026) were correlated. However, none of the above were validated in PG. CONCLUSIONS Compared to intracranial germ cell tumours in the PG or BG/T, the growth problems in S/SS was more prominent and aggravated after treatments, especially in those with younger age, female sex, higher radiotherapy dose, and more chemotherapy cycles.

BACKGROUND Despite aggressive treatment with surgery and chemo-radiation therapy, it is difficult to cure patients with glioblastoma (GBM). The end-of-life (EOL) phase of patients with GBM, and related problems, have not yet been adequately studied. Unlike in other countries, most cancer patients died in the hospital (84%) in 2017, but the Japanese government has recommended palliative home care and the number of deaths at home has recently been increasing. This study explores the current situation of EOL care for GBM patients in Japan. METHODS We retrospectively examined the clinical course and EOL phase of 166 consecutive patients who were treated in our hospital between 2010 and 2017. RESULT: In total, 107 patients died; 27 (25.7%) at home, 24 (22.8%) in hospice care, 8 (7.6%) in nursing homes, 46 (43.9%) in hospitals (long-term care hospitals [LTCH; 19.8%], our hospital [13.3%], and other neurosurgical hospitals [10.4%]). According to our previous research, in 2001–2005, 6% of GBM patients died at home, 3% in hospice case, and 91% in the hospital. The KPSof patients who started palliative home care or transferred to another hospital was 50–60. The median survival time and length of EOL phase for patients who died at home were 498 and 76.5 days; 395 and 103 days in hospice care; 533 days and 149 days in LTCH; 374 days and 52 days in our hospital; 338 and 75.5 days in other neurosurgical hospital; and 557 days and 37 days in nursing homes, respectively. CONCLUSION The number of GBM patients who died at home in Japan is increasing, and we must consider the problems of the EOL phase and improve the quality of EOL care.

BACKGROUND Optune-delivered TTFields is a promising anti-mitotic FDA-approved cancer therapy in adult patients with high-grade gliomas (HGG), although effectiveness is not yet proven in pediatric patients. A multicenter trial [NCT03033992] evaluating the feasibility and device-related toxicity for children with recurrent or progressive supratentorial high-grade glioma (HGG) and ependymoma is being conducted. This presentation reports the interim health-related quality of life (HRQOL) and device-use experiences reported by patients and parents. METHODS Participating patients (aged 5–21 years) and one of their parents completed the following measures at baseline and prior to each intervention cycle: PROMIS Fatigue, Anger, Anxiety, Depressive Symptoms, Mobility, Upper Extremity Function, and Peer Relationships and Neuro-QOL Stigma. Participants completed an exit survey when they were off the study regarding their experiences wearing the device. RESULTS This planned interim analysis included 11 patients (7 males/4 females) with supratentorial tumors: ten HGG and one ependymoma. Median age was 14.2 (6.4–21.3) years. Patients reported worse HRQOL than the norms on all domains. Of these 11 patients, 6 completed the exit survey. No significant changes (p< 0.05) between the baseline and the final assessment were found except for Stigma. Patients perceived less stigma at baseline than at the final assessment (t=2.82, p=0.0370). Of these 6 parents who completed the Exit Survey: most considered wearing the device to be easy (n=5).Patient reminders were unnecessary (n=5), patients rarely/didn’t complain (n=4) or refuse (n=5) to wear the device, there was rare/no (n=4) difficulty with daily activities because of the device, and patients were not (n=4) or sometimes (n=2) embarrassed to wear the device. CONCLUSION Preliminary results indicate Optune-delivered TTFields therapy is feasible and accepted by children and parent with no evidence of negatively impacting patients’ QOL. Accrual has been expanded beyond the interim analysis.

INTRODUCTION Glioblastoma carries a high economic burden for patients and caregivers. We investigated drivers of hospital costs of surgery for newly-diagnosed glioblastoma. METHODS Retrospective review of GBM patients undergoing first resection at UCSF (2010–2015) and corresponding hospital charges. Our cohort was divided into low (LC) and high cost (HC) groups for total surgical cost. Multivariate regression was used to identify factors driving cost of surgery. RESULTS Of 242 patients, 36.7% (n=86) were females (median age=62 years). The mean total hospital cost for surgery among our patient cohort was $40,384. When comparing the LC and HC groups, mean total hospital cost for surgery for HC patients was almost twice as much as LC group ($51,744 vs $29,023, p< 0.001). Kaplan-Meier analysis revealed that having higher cost of surgery worsened patient prognosis, with a 21% longer overall survival in the LC cohort versus the HC cohort (14.7 vs 17.9 months, p=0.02; HR=1.41 [1.05–1.91], p= 0.023). Tumor diameter at diagnosis was largest for HC group (4.7 cm) versus LC patients (3.9 cm, p=0.002). Multivariate analysis revealed longer hospital stay (F-ratio=8.87; p=0.01), longer ICU stay (F-ratio= 12.34, p< 0.001), younger age at surgery (F-ratio=6.71, p=0.02) and multifocal disease (F-ratio=6.26, p=0.02) to be independent predictors of higher cost of surgery, while having PCP at diagnosis (F-ratio=6.92, p=0.02), health insurance coverage (F-ratio= 4.23, p=0.03) and being married (F-ratio=3.71, p=0.04) were independent predictors of lower cost of surgery. CONCLUSIONS Higher costs of surgery correlate with worse survival outcomes in glioblastoma patients. Beyond the anticipated finding that greater disease burden drives some of this inverse correlation between cost and survival, correctable socioeconomic factors such as PCP and insurance status also drive higher hospital charges for GBM surgery. Manipulation of these factors is necessary to minimize the economic burden of disease and adopt cost-effective surgical treatments for GBM patients.

Research in young adult (YA) patients is novel, particularly in central nervous system tumors like ependymomas. Stagnant survival outcomes in YAs are concerning compared to improvements within pediatric and older adults. Additionally, uncertainty of the impact of treatment on psychosocial and behavioral outcomes during an essential developmental stage warrants attention. The purpose of this report is to explore ependymoma YA outcomes data to inform care. Adult ependymoma (n=191) patients participating in a web-based outcomes study completed clinical data and validated questionnaires (EQ-5D, MDASI-BT). YAs 18–39 (n= 58) were compared to older adults (OAs) >40 (n=133). Participants were predominantly female (68%), with tumor location in brain (29%) or spine (71%). The majority of YAs (67%) reported seeing a physician within 6 months from symptom onset, whereas OAs were more likely to delay for 7 months or longer. Headaches (brain tumor 70%) and numbness (spine tumor73%) were common presenting symptoms for both age groups. 76% of YAs were working before diagnosis, however 27% stopped work, 18% reduced hours, 7% switched jobs and 2% lost their job after diagnosis. At time of participation, most participants were not on active treatment (61%), but both YA and OA frequently endorsed use of pain medication (37%). Tumor recurrence was more common in YAs (30%) compared to OAs (19%). Common moderate to severe symptoms in YAs included distress (27%) and fatigue/sadness (18%) with brain tumors compared to fatigue (56%) and distress/disturbed sleep/drowsiness (36%) with spine tumors. Over a third of YAs reported some impact on general health (usual activities, pain/discomfort, and anxiety/depression). Despite stable disease, YAs with ependymoma experienced mood and lifestyle challenges and reported significant symptoms and use of pain medication. Further exploration is needed on the impact of cancer-related effects on YAs to gain insight on appropriate management and care.

BACKGROUND Health-related quality of life (QoL) and patient reported outcomes are essential to guide patient-care. The NIH sponsored electronic Patient-Reported Outcomes Measurement Information System (PROMIS) is well established in multiple cancers but not in Glioblastoma (GBM). The aim of this study was to analyze the association of the PROMIS measures with the European Organization for Research and Treatment of Cancer core instrument (EORTC-QLQ-C30) and the brain tumor specific EORTC QLQ-BN20 questionnaire (EORTC-BN20) in GBM patients. METHODS Newly diagnosed patients with GBM were enrolled prospectively to assess association between both tools. The PROMIS modules were selected to reflect the quality of life domains assessed in the EORTC- QLQ-C30 and EORTC-BN20 questionnaires. Pearson’s correlation coefficients were computed between the PROMIS and EORTC-C30/ EORTC-BN20 measures. Due to multiple responses over time, the p-values for the correlation coefficients were adjusted. Because of the large number of correlations computed and many with p-values less than 0.05, the magnitude of the correlation was considered. Correlations greater than 0.5 or less than -0.5 were consider to be “strong” associations, while correlations between 0.3 and 0.499 (or -0.3 and -0.499) were consider to be “moderate”. RESULTS 43 patients with 124 PROMIS/EORTC responses were included in this analysis. The PROMIS measures had strong associations with the QoL functioning and fatigue measures from the EORTC-C30 and future uncertainty, communication deficit, motor dysfunction, social satisfaction and drowsiness from the EORTC-BN20 (all p< 0.001 and correlation >0.5). CONCLUSIONS There are strong and moderate correlations in the majority of PROMIS assessments and the EORTC tools. The PROMIS toolkit may be used to assess core features of the EORTC surveys. GI symptoms, seizures and itchy skin do not correlate. Given the prior documented shorter assessment time, the PROMIS toolkit may be a feasible alternative to established legacy tools to assess QoL in GBM patients.

BACKGROUND: Caregiver support is a critical part of patient care. Neuro-oncology caregivers are at high risk for distress and burden, yet there are no guidelines to best address their needs. In 2014 UCSF formally launched the UCSF Neuro-Oncology Gordon Murray Caregiver Program (UCGMCGP) offering consultations, educational resources, linkage to community resources, and caregiver specific programing. The goal of care is to strengthen and/or supplement the resources available to mitigate the caregivers’ experience of distress and burden. This care is delivered by a dedicated caregiver staff. We report on the caregiver services provided since the inception of the program. DESIGN AND METHOD: Caregiver services are offered from diagnosis through bereavement and are documented in the patient’s electronic medical record (EMR) and a REDCAP database. Information on type of service, phase in illness, needs, and care provided is captured at each encounter. RESULTS: From January 2014 - May 2019, 4200 caregiver encounters were documented. 60% occurred in the newly diagnosed phase, and 25% at disease recurrence and/or transition to hospice. The most frequent services comprise emotional support (41%), information on the disease and resources (25%), and navigation of health care needs (11%). Other services were specifically tailored to the individual caregiver needs. DISCUSSION: Our findings regarding the caregivers’ need for information on resources, disease specific information, and knowledge about navigating the health care environment are consistent with those reported in the literature. Many neuro-oncology services can meet these needs using the clinic resources that currently exist. However, the high need for emotional support is notable and highlights the importance of having a well-trained dedicated caregiver staff to cultivate therapeutic alliances, offer individualized assessments, and provide interventions as needs arise. Future directions include a more detailed examination of the emotional support provided so that resources can be better tailored to address this need.

BACKGROUND Nearly 80,000 new cases of primary brain tumors are expected to be diagnosed this year, 32% of CNS tumors are malignant. Anecdotally, patients who report use of cannabis, frequently describe higher quality of life scores (QOL) in standardized instruments. However, the lack of available tools that allow systematic documentation of cannabis use results in a barrier to accurately assess efficacy, potential benefits and risks. METHODS We conducted a single center, observational study: patients with primary brain tumors answered a previously validated instrument to explore cannabis use. QOL was assessed using the instruments from the European Organisation for Research and Treatment of Cancer: QLQ-C30 and its complementary module BN-20 as well as the EuroQol instrument EQ-5D-5L. Eligible participants were identified as cannabis users or non-users, completing the instruments in a self-administered fashion. RESULTS To date, 51 patients who signed informed consent were enrolled and answered the questionnaires, mean age was 51 (SD 12.95) years, 34 were male, 30 were considered active cannabis users (66.6% males and 33.3% females). The mean global health score in the QLQ-C30 instrument was 68.4 (SD: 20.7) among cannabis users and 82.2 (SD: 17.5) among non-users. The mean difference in QOL scores between users and non-users was 13.8 (95%CI: 2.8, 24.8; p=0.01). In contrast the difference between cannabis users and non-users in QOL index in the EQ-5D-5L instrument was 0.13 (95% CI: 0.06, 0.2; p=0.001). Among cannabis users, patients perceive their symptoms as moderate before using cannabis and mild after using cannabis (p >0.001) CONCLUSIONS In our analysis, patients who use cannabis reported, on average, lower QOL scores. Potentially, sicker patients resort to cannabis to improve their symptoms and ultimately quality of life. The perception of patients is that cannabis usage improves overall quality of life. Findings provide support to perform prospective studies.

INTRODUCTION Glioblastoma has a poor prognosis, further complicated by postoperative seizures. We analyzed various factors associated with postoperative seizures in glioblastoma. METHODS Retrospective chart review of 932 patients who underwent craniotomy for glioblastoma (777=83.4% newly diagnosed; 155=16.6% recurrent) at our institution (2002–2014). Postoperative seizures were defined as those occurring within 14 days of surgery. RESULTS Our cohort consisted of 49.9% (n=465) males with mean age of 55.8 (range 9–91) years. In total, 69 (7.4%) had postoperative seizures with mean time from surgery to seizure of 3.1 days (IQR=1–4). Of 536 patients (57.5%) receiving seizure prophylaxis, those treated with Keppra were more likely to have postoperative seizures compared to those on Dilantin (10.9% vs 5.0%; p=0.022). Primary tumor patients were less likely to seize postoperatively compared to recurrent tumor patients (9.7% vs 19%; p=0.016). Patients presenting with seizure as chief complaint (12.1% vs 5.1%; p=0.025) and those with >20% of Chromosome 10 deletion were more likely to have seizures postoperatively (12.4% vs 6.1%; p=0.0029). Risk factors for postop seizures for newly-diagnosed patients included subtotal resection versus gross total resection (28.0% vs 7.1%; p=0.022). Risk factors for postop seizures for recurrent patients were >5% EGFR amplification (23.5% vs 5.8%; p=0.0021) and hyponatremia within mean 2.5 days (IQR 0–1) after surgery (20.8% vs 7.1%; p=0.035). CONCLUSION We identified several risk factors for postoperative seizures in glioblastoma patients, most of which were clinical (seizure as chief complaint, the antiepileptic chosen for prophylaxis, and extent of resection), while some were molecular and linked to genes whose products have demonstrated links to epileptogeneicity (Chromosome 10, EGFR). These findings may assist physicians in detecting glioblastoma patients that are at higher risk for postoperative seizures and in providing prophylaxis to reduce morbidity.

INTRODUCTION Aims of awake surgery are considered as maximum resection and functional preservation for postoperative quality of life (QOL). However, any studies have not been focused on the fundamental hypothesis that preservation of brain functions contributes to patient’s QOL. In this study, we investigated postoperative QOL and its related factors to reveal contribution of awake surgery for maintaining QOL. METHODS A total of 63 patients who underwent awake surgery were studied. Several kinds of neuropsychological/neurological tests and SF-36 to assess QOL were performed at 6-month postoperatively. In SF-36, 3-component scores, including physical, mental, and role/social component were calculated and they were compared with healthy volunteers. Additionally, their background factors were collected from medical records. Then, influenced background and functional factors to QOL were analyzed using multiple regression analysis. Moreover, voxel-based lesion symptom (VLSM) analyses were performed to investigate relationship between resected regions and QOL. RESULTS Though physical and mental QOL scores were almost equivalent to healthy volunteers, role and social component score (RCS) were significantly declined (36.7, < .0001). Using multiple regression analysis, RCS significantly related to reinstatement among several background factors (p=0.0038). Until postoperative 6 months, 71.6% returned to professional work. Moreover, RCS correlated significantly with working memory, language, and motor function among several brain functions (p=0.019, 0.0028, 0.010, respectively). In the VLSM analysis, patients who resected following regions showed significantly low RCS; the left inferior frontal and superior to middle temporal gyri which relate to language; and right supplementary motor area and cingulate cortex which are involved in motor control or working memory. CONCLUSIONS The important factors to maintain QOL are reinstatement and preserving brain functions including language, motor, and working memory. This suggests that awake surgery aiming for preserving these functions is a benefit for postoperative QOL.

Given the high prevalence of neurobehavioral symptoms such as depression, fatigue, and cognitive dysfunction in patients with gliomas, it is critical to regularly screen for these symptoms at each oncology visit. The current study evaluated the validity of the UCLA Neuro-Oncology Program Psychosocial Patient Screening Form (PPSF) to measure depression, fatigue, and cognitive complaints in a sample of 22 patients enrolled in a study observing neurocognitive and psychosocial change in long-term survivors. Patients were asked to complete the PPSF at regular clinical visits, and this data was retrospectively reviewed. The PPSF consisted of the Patient Health Questionnaire-2 (PHQ-2) and options to endorse experiencing more fatigue, as well as significant memory, speech, attention, or thinking difficulties. At the most recent visit, patients also completed a validated psychosocial assessment that included the Beck Depression Inventory-II (BDI-II), Multidimensional Fatigue Symptom Inventory-Short Form (MFSI-SF), and Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog). Endorsement of recent depressive symptoms, increased fatigue, and elevated cognitive difficulties on the PPSF at the most recent visit were found to be significantly correlated with abnormal mean scores on the BDI-II (M= 22.5, SD= 11.24, t= -3.47, p= 0.003), MFSI-SF (M= 26.08, SD= 15.51, t= -2.34, p= 0.029), and perceived cognitive abilities subscale of the FACT-Cog (M= 5, SD= 2, t= 4.642, p= 0.00), respectively. Abnormal scores on the MFSI-SF and FACT-Cog were also significantly correlated with endorsement of fatigue and cognitive complaints at any previous visit. Although other measures of screening for depression, fatigue, and cognitive complaints exist, the PPSF is effective in providing immediate, clinically significant information to the clinician for comprehensive patient care. The PPSF should be utilized to capture and address psychosocial changes and facilitate a deeper understanding of the effects of treatment on glioma patients.

INTRODUCTION Glioblastoma is the most common primary malignant brain tumor, with an annual incidence of 3–4 new cases per 100,000 people. Despite advances in chemotherapy, radiotherapy, and surgical interventions, prognosis remains poor. Aims of treatment for life-limiting diagnoses should extend beyond increasing survival time to include palliation of symptoms and promotion of quality of life. Here we describe patient-reported symptoms both early and late in the glioblastoma treatment trajectory, as well as their associated interference with daily life. METHODS Fifty patients with newly diagnosed glioblastoma were recruited between September 2015-March 2018. Demographic and clinical information was collected from medical records. Patients also completed the brain tumor-specific MD Anderson Symptom Inventory (MDASI-BT) approximately every 8 weeks from completion of chemoradiation through cessation of active disease treatment. Both individual and categories of related symptoms reported in the initial two (early treatment) and final two (late treatment) MDASI-BT assessments were examined for symptom frequency, severity, and relationships between symptom severity and interference with daily life. Patients still receiving treatment or who completed < 4 total MDASI-BT assessments were excluded from the analysis. RESULTS The most commonly reported symptoms were often, but not always, consistent with the symptoms rated as most severe. This was true for individual symptoms as well as categories of symptoms. The most common/severe symptoms also changed from early to late treatment. Overall symptom burden was positively correlated with symptom interference in daily life (r=0.67, p< 0.0001). Regression analysis identified different symptoms as predictors of interference in early as opposed to late treatment, and these predictors did not necessarily align with the most common/severe symptoms. CONCLUSION Symptom experience for patients with glioblastoma is complex and dynamic. Attention to symptom trajectories for patients with glioblastoma may direct approaches to assessment, early identification, and symptom management, thus promoting better quality of life.

BACKGROUND GBM is an aggressive cancer with poor prognosis. We explored impact of disease on caregivers by characterizing caregiver burden and QOL associated with patient characteristics. METHODS Primary caregivers of living adult GBM patients with cognitive dysfunction completed a GBM-specific caregiver burden survey and the validated Caregiver Quality of Life Index–Cancer Scale (CQOLC). Patient data were abstracted from medical records (7/2018-4/2019). Patient characteristics were compared between highest and lowest tertile of CQOLC scores (range 0–140); higher scores suggest better QOL. RESULTS There were 140 patient-caregiver dyads enrolled in the study. Mean patient age was 57 years (range 24–63); majority white males (62.9%), unifocal lesion (90%) and normal activity level at diagnosis. Forty-percent had methylated MGMT promoter status. Caregivers were mostly white (61.4%), college-educated female spouses of similar age; 87.8% were caregiving for >6 months. Median CQOLC score was 82 (tertiles: < 76 and >92). More caregivers in the lowest vs highest CQOLC tertile reported ‘not employed due to caregiving’ (52.4% vs 12%, P< 0.01), ‘changes in patients’ personality’ (73.3% vs 42.6%, P< 0.01), ‘patient memory problems’ (93.5% vs 77.1%, P=0.02), and caring for patient with recurrence treated with ‘chemotherapy other than temozolomide’ ([TMZ], 27.7% vs 8.3%, P=0.01). There was > 10% difference in proportion of caregivers in the lowest vs highest CQOLC tertile for the following patient characteristics: largest lesion in right temporal lobe at baseline and partial resection at initial treatment. Conversely, there was > 10% difference in the highest vs lowest CQOLC tertile for Karnofsky score (> 80), largest lesion in right frontal lobe at baseline, surgical clean margins, TMZ for initial treatment, and surgery for recurrence. CONCLUSION Unemployment, patient personality/memory changes, and chemotherapy other than TMZ use had significant impact on caregiver burden/QoL. This may help identify caregivers to receive support and intervention.

Information is limited on the impact of glioblastoma (GBM) on patient employment and caregiver time commitments. This observational multisite study evaluated the impact of GBM on patients’ employment and on caregivers’ ability to work and perform daily activities. A total of 180 adults diagnosed with GBM and their caregivers were stratified across 4 groups representing specific stages in the disease course: Group 1=newly diagnosed; 2=postradiation; 3=stable disease; 4=recurrence. We assessed the impact of GBM on employment status and self-reported cognitive function in patients (EORTC QLQ-C30) and in caregivers (Work Productivity and Activity Impairment Questionnaire). Prior to diagnosis, 64% of all patients (74% < 65 years old) were employed, while only 22% (26% for those < 65 years old) were employed after diagnosis. Though not reaching significance, newly diagnosed patients and those with stable disease reported higher mean cognitive function scores (72.0 and 71.9) than other groups (61.1 and 61.3; P=0.227). At study enrollment, 56% of all caregivers were employed, while 41% had left their jobs to care for their patients. The impact on caregiver work productivity varied with a higher percentage of caregivers of newly diagnosed patients and those with recurrent disease missing work (45% and 24%, respectively) and experiencing work impairment (54% and 36%, respectively) than the other groups (P< 0.05). Forty-one percent of caregivers of newly diagnosed patients to 25% of patients with stable disease reported impairment of daily activities. GBM had a significant impact on patient and caregiver employment from the time of diagnosis. High cognitive burden among patients might have impacted their employment. Overall work and activity impairment for caregivers was evident in all groups with a notable impact at the time of first diagnosis and recurrence of disease. Future studies will explore the impact of these findings in a longitudinal cohort.

Germ cell tumor (GCT) is a juvenile tumor, completely cured by adequate treatments, including radiation therapy and chemotherapy. However, survivors require continuous medical treatment mostly due to hypopituitarism, and several issues could be observed during follow-up. In the present report, we analyzed medical records of long-term GCT survivors, retrospectively, and make the issues clear. Of ninety-three, 82 GCT patients with several medical and social information are included in the analysis. Median follow-up time is 11.95 years, and 47 patients followed more than ten years. Fifteen deaths are recorded, and 8 are tumor-progression, and 7 are treatment-related long-term events, including four subsequent gliomas, one cerebral vascular disease, one renal cancer, and one sudden death. Seven survivors developed subsequent malignancy, and all lived more than 19 years and received more than 50Gy of irradiation. The overall survival rate is gradually decreasing more than ten years follow-up, such as 10-, 15- and 25-years survival are 92.3, 87.7 and 73.3%, respectively. Long-term follow-up also clarified several social issues. Forty-two of 50 adult survivors had a job after the treatments, but only thirty-four (70.8%) are still working. Of note, only nine (18.8% of adults) survivors got married. All four women require any hormone replacement, while only one of 4 men requires the replacement. Long-term follow-up of GCT survivors revealed subsequent malignancy and social problems. Recent attempt to decrease radiation dose and to give adequate hormone replacement might overcome these problems. Clinicians still observed GCT patients closely.

INTRODUCTION The risk of venous thromboembolism (VTE) remains high for patients with glioblastoma (GBM) throughout the disease trajectory. Our previous work demonstrated the Khorana scale lacks specificity in this population. We therefore constructed, and attempted to validate a predictive model specific for the development of VTE during adjuvant chemotherapy in glioblastoma patients. METHODS A prior study of GBM patients treated at MD Anderson (MDACC) during the years 2005–2011 found from a multivariate analysis that male sex, BMI ≥ 35, KPS ≤ 80, and steroid therapy were significantly associated with the development of VTE. A predictive model from the MDACC cohort was created using these risk factors, and we attempted to validate the model in an independent cohort of GBM patients treated at Henry Ford from 2010–2015. RESULTS To develop the model 315 patients from the MDACC cohort were randomly divided into two parts: training (75% of data) used for model building, and validation (25% of data) used for model validation. Using the predictive model, the MDACC validation cohort found 80% sensitivity and 80% specificity. We then validated the model in the Henry Ford cohort of 190 GBM patients of which 50 developed a VTE. In the external validation set, the predictive model was found to have a sensitivity = 78% and specificity = 49.3% (Fisher test p-value = 0.0008). CONCLUSIONS Our predictive model for the development of VTE during adjuvant chemotherapy in GBM patients retained high sensitivity in an external data set, however high specificity was lost. While the specificity in our model was higher than in previous studies examining the Khorona scale in GBM patients, further refinement to improve the models reliability to correctly identify people who will not later develop a VTE may be helpful.

With a bleak prognosis for malignant glioma, maintaining quality of life (QoL) and decreasing distress of the patient are important in the clinical care of the patient. Mindfulness meditation is a mind-body therapy that has been recently investigated in the oncology field as a non-pharmacological strategy to ameliorate cancer symptoms and to improve QoL. This practice has not been studied in the primary brain tumor population. We initiated a pilot study among newly diagnosed brain tumor patients with the hypothesis that mindfulness meditation practice may benefit the patient by decreasing stress and anxiety and provide a means to cope with their new diagnosis. The specific aim of this pilot study is to determine the feasibility of a mindfulness meditation program to this population during standard of care chemoradiation and to determine whether it merits additional research in a subsequent trial. The intervention consists of six weekly one hour telephone-based mindfulness sessions followed by one in- person mindfulness session consisting of: mindfulness and healing, understanding stress, abiding in kindness, working with difficult emotions, finding peace, going forward and living fully. Subjects are provided with downloadable guided meditations. We plan to enroll fifteen newly diagnosed WHO grade III or IV malignant glioma subjects prior to their 6 week chemoradiation course. We will determine the percentage of subjects approached vs enrolled, number of sessions that each subject attends, completion of study questionnaires and satisfaction of the subjects. QoL surveys include: Functional Assessment of Cancer Therapy- Brain, Functional Assessment of Cancer Therapy- Cognitive Function, Pittsburgh Sleep Quality Index, Functional Assessment of Chronic Illness Therapy-Fatigue and the Five Facet Mindfulness Questionnaire – short form. 13 subjects have been approached and 8 signed consent over a two-month period. We will provide final study results at time of presentation.

INTRODUCTION The impact of treatment on both the quality and the quantity of life, i.e. the ‘net clinical benefit’, should be considered to facilitate shared decision making. Two methods that combine survival and health-related quality of life (HRQoL) data: Quality Adjusted Effect Sizes (QASES) and Joint Modelling (JM) were applied to gain insight in the net clinical benefit. METHODS The net clinical benefit in one RCT (EORTC 26951 comparing radiotherapy (RT) + PCV chemotherapy versus RT alone) was calculated as a proof of concept for other trials. With the QASES method, effect sizes for differences in survival and HRQoL between treatment arms were calculated. JM allows simultaneous modeling of a longitudinal outcome (HRQoL), and a time-to event outcome (survival). HRQoL scales/items that were selected for primary analysis in the main study were also selected for this analysis: fatigue, global health, social functioning, communication deficit, seizures, physical functioning, and nausea/vomiting. RESULTS 288/386 patients completed baseline HRQoL forms and were included in the analysis. Overall survival (OS) was significantly longer with combined treatment (42.3 vs. 30.6 months). The percentage of patients who experienced a clinically relevant deterioration (≥10 points) in nausea/vomiting, fatigue, social functioning and global health up to one year after treatment compared to baseline was larger in the RT+PCV arm. QASES corresponded to a reduction in the median OS difference from 9.7 months up till 5.5 months, given equal weights to OS and HRQoL. JM analyses resulted in a theoretical loss of treatment effect in OS of 2–6% when adjusting for HRQoL. CONCLUSION Both methods showed that adjusting for the impact of treatment on a relevant HRQoL parameter reduced the survival benefit in the experimental treatment arm compared to standard treatment arm. Applying these methods may facilitate communicating the impact of treatment to patients in clinical practice.

INTRODUCTION Malignant glioma (MG) patients often experience chemotherapy-induced nausea and vomiting (CINV). Olanzapine has recently been added to national anti-emesis guidelines for patients on moderately/highly emetogenic chemotherapy. In this retrospective study, we investigated the use of olanzapine for refractory-CINV (R-CINV) in MG patients. METHODS In this chart review, we queried adult MG patients with KPS ≥ 70 who received olanzapine from January 2019-March 2020. Patients were included if they were prescribed olanzapine for CINV. Data on nausea/vomiting improvement, olanzapine dosing/schedule, number of refractory anti-emetic trials, concomitant corticosteroid use, and demographics were collected. RESULTS We identified 21 MG patients who were prescribed olanzapine, with 9 of those patients receiving olanzapine specifically for CINV. Seven patients had WHO grade IV glioma, and 2 patients had anaplastic astrocytoma (WHO grade III). Five of 9 patients (55.6%) were male, all were Caucasian and median age was 54 years. Patients tried an average of 3 anti-emetics prior to initiating olanzapine for R-CINV. Only one patient was taking concomitant corticosteroids; which is not in concordance with national anti-emesis guidelines. Four of 9 patients (44.4%) achieved control of R-CINV with olanzapine. The olanzapine dose and key biomarkers (IDH-status, MGMT promoter methylation) were similar between those experiencing R-CINV and those without symptoms. CONCLUSIONS In this study, we find that approximately half of patients with R-CINV achieved improved nausea and vomiting control with the addition of olanzapine. The lack of corticosteroid use for anti-emesis in MG continues to make this population challenging to manage. The relatively high success rate in patients that had failed, on average, 3 anti-emetics, suggests that olanzapine may be a potent addition to the anti-emetic toolkit for MG patients. These results inspire further large-scale research to validate this observation and define the optimal role for olanzapine in treating R-CINV in MG patients.

BACKGROUND Early access to palliative care is a critical component of treating patients with advanced cancer, particularly for glioblastoma patients who have low rates of survival despite optimal therapies. Additionally, there are unique considerations for primary brain tumor patients given the need for management of headaches, seizures, and focal neurological deficits. METHODS We conducted a survey of 109 physicians in Sub-Saharan Africa in order to determine level of understanding and skill in providing palliative care, types of palliative care therapies provided, role of cultural beliefs, availability of resources, and challenges faced. Demographic data including age, gender, and prior training was collected and analyzed using ANOVA statistical testing. RESULTS Among the participants, 48% felt comfortable in providing palliative care consultations, 62% have not had prior training, 52% believed that palliative care is only appropriate when there is irreversible deterioration, 62% expressed having access to palliative care, 49% do not have access to liquid opioid agents, 50% stated that cultural beliefs held by the patient or family prevented them from receiving, palliative care, and 23% stated that their own beliefs affected palliative care delivery. Older providers (age > 30) had a clearer understanding of palliative care (p = 0.004), were more comfortable providing consultation (p = 0.052), and were more likely to address mental health (p < 0.001). CONCLUSIONS Palliative care delivery to glioblastoma patients in Sub-Saharan Africa is often delayed until late in the disease course. Barriers to adequate palliative care treatment identified in this survey study include lack of training, limited access to liquid opioid agents, and cultural beliefs. Challenges most often identified by participants were pain management and end-of-life communication skills, but also included patient spirituality and psychological support, anxiety and depression, terminal dyspnea, ethics, and intravenous hydration and non-oral feeding.

INTRODUCTION Clinical trials have demonstrated that the use of low intensity alternating electric fields, known as Tumor Treating Fields (TTFields), via the Optune™ device extends overall survival times in patients with glioblastoma when combined with standard chemotherapy. In addition to survival time, quality of life (QOL) is an important factor in treatment decisions for life-limiting diagnoses. Examinations of the impact of TTFields on QOL have yielded mixed RESULTS: Here, we describe patient-reported symptoms in patients with glioblastoma undergoing treatment with TTFields and compare symptom burden and associated interference with daily life to that of a historic non-TTFields cohort. METHODS Patients with primary glioblastoma who chose treatment with the Optune™ device were prospectively enrolled and asked to complete the brain tumor-specific MD Anderson Symptom Inventory (MDASI-BT) approximately every 8 weeks through cessation of active disease treatment. MDASI-BT assessments were examined for symptom frequency, severity, and relationships between symptom severity and interference with daily life. These results were also compared with a matched cohort of patients who did not chose TTFields treatment and completed MDASI-BT assessments as part of a previous study. RESULTS The most commonly reported symptoms for Optune™ users were fatigue, sleep disturbance and speaking/word finding. Fatigue and sleep disturbance were also among the symptoms rated as most severe, along with feeling drowsy/sleepy. Interference with general activities and overall enjoyment of life as both were reported as both the most common and most severe impacts on daily life. When compared with historic data from non-Optune™ users at the same point in treatment, we found no difference in either symptom burden (p=0.48) or interference scores (p=0.72). CONCLUSION Attention to both survival benefit and symptom experience related to treatment options can inform patient decisions and direct approaches to symptom management as well as improved QOL.

BACKGROUND Brain metastasis (BM) is the most common form of brain cancer affecting 20-40% of cancer patients. Advancements in cancer therapy has prolonged survival but BM incidence has increased. BM management requires a multidisciplinary approach to individualize care via an ever-growing sum of surgical, radiation, and systemic therapy options. Consensus is achieved by multidisciplinary tumor board meeting (MTBm). Nevertheless, BM diagnosis predicts poor prognosis. Palliative Care (PC) is essential for proper BM management. Yet, formal PC assessment may not be available for MTBm. We evaluated whether MTBm consensus recommendations were followed. RESULTS Our weekly MTBm discussed 157 BM cases during 2019 (median age: 64 years [range 28-91], male/female: 82/75). The most common primary diagnosis was lung (n=49, 31%), breast (n=24, 15%), melanoma (n=16, 10%). The majority was newly diagnosed BM (n=143, 91%). MTBm recommendations were divided into three not-mutually-exclusive categories: surveillance/workup (n=78, 50%), BM-directed treatment (n=101, 64%) and GOC discussion (n=7, 4%). MTBm recommendations were fully followed in 113 cases (72%), partially in 13(8%), and not followed in 25(16%). Of the 38 patients whose recommendations were partially/not followed, the main reason was transition to hospice/death (n=26, 68%). Of the 101 patients recommended treatment, 68% (n=68) fully followed it, yet 31% (n=21) of them died within 3 months; for those living longer than 3 months (n=47, 69%), median KPS at 3 months was 70 (range 30-90). Of the entire cohort (n=157), only 20 (13%) established consistent PC follow-up (>1 outpatient visit) and 69 cases (44%) transitioned to hospice/died within 6 months, 30 of which (43%) still completed surgery (n=6) or radiotherapy (n=24) within this period. CONCLUSION Periodic assessment of MTBm recommendations is relevant for sensible BM management. Balancing treatment while focusing on QoL in a patient population with limited survival is challenging. PC assessment at MTBm could close this gap.

Patients often consult the internet if they suspect a brain tumor. Migraine and tension type headache have an active prevalence of round 50%. 96% of the general population has had some kind of headache during their lifetime. There are many possible exacerbating factors for precipitating or worsening headache. Consequently headache makes many people suspect a brain tumor. Nowadays when MRI and CT are widely available making earlier diagnosis of brain tumors possible, it has been discovered that in adults headache is rarely the most important or even existing symptom. Nelson and Taylor (1) find headache in 2% of brain tumor patients and Posti et al (2) found it in 20% of glioma patients as presenting symptom but never as a sole symptom. What is the information the patients get on the internet sites? In order to find out the author analyzed 36 webpages concerning headache and brain tumors by brain tumor and cancer societies, Neuro-oncology clinics, University clinics and general health information pages in 4 different languages (Finnish, English, Swedish and German). On 13 of these 36 pages headache was considered the presenting or main symptom. Particularly different cancer and brain tumor societies (8 of 9) explain that headache is the main symptom. On some pages it was concluded that brain tumor patients often have headache but headache patients seldom brain tumors. This is obviously true but does not help patients much. Consequently many of these information sites give patients somewhat vague or even misleading information. This will cause unnecessary anxiety, fear and visits to healthcare. We should strive to make patient information both more clear and more accurate. In order to accomplish this we need more information of the current situation.

BACKGROUND Primary brain tumor patients experience high levels of distress due to their diagnosis and treatment leading to changes in their health-related quality of life (HRQoL). Even with the standard treatment of 6 weeks of radiation with concurrent temozolomide for malignant gliomas, the prognosis remains poor. We sought to provide a new intervention and coping skill for our patients during chemoradiation to alleviate some of their stress and anxiety. Mindfulness meditation is a mind-body therapy used in many other cancer groups which can alleviate stress and improve fatigue, cognition, and sleep. METHODS 15 newly diagnosed malignant glioma subjects started 1-hour weekly phone mindfulness sessions during the 6 weeks of chemoradiation. They completed an in-person mindfulness session and interview upon return to the clinic with a final follow up survey 2 months later. Patient reported outcomes questionnaires were collected at each time point. RESULTS 0/15 subjects completed their post-chemo/in-person visit, and 9 completed their final follow-up surveys 2 months later. Scores for perceived cognition, fatigue, sleep, anxiety, spiritual-well being and mindfulness improved over these time points. Completed HRQoL patient-reported outcome questionnaires with positive trends noted from the mean (SD) post-chemo/in-person visit change from baseline and the follow-up change from baseline were: FACT-Cog perceived Cognitive Impairments subscale 4.11(13.55), 9.14(16.77); FACT-G total -5.48(16.02), 7.02(13.44); FACT-Br total -3.15(24.76), 13.17(23.37); FACIT-F -5(7.68), 0(7.92); and the FACIT-Sp12 -1.38(7.6), 2.17(4.88). Trail making Part A completion times from baseline to follow up decreased over time in 8/9 subjects and 7/9 subjects in Part B. Per the final follow up survey, 7/9 subjects continued their meditation practices after the training sessions and subjectively noted benefits with their stress and anxiety. Conclusion: Despite this small sample size, this mindfulness meditation intervention did positively impact patient-report outcomes of HRQoL in this patient population, thereby larger randomized studies are warranted.