bluuebunny/crossref_metadata_2025_split huggingface dataset:
QOLP-03. OBSERVATIONS OF COMPLEMENTARY CANNABIS THERAPY IN MALIGNANT GLIOMA PATIENTS
Authors: Blondin Nicholas 
Published: November 2021

Abstract

INTRODUCTION
As of 5/15/2021, medical marijuana programs exist in 37 states, and marijuana is legal for recreational use in 17 states. In Connecticut, the CT Medical Marijuana Program (MMP) was created in 2012 and I began certifying my patients with malignant glioma (brain cancer) for the program in 2014. I now provide data on my experience with complementary cannabis therapy.

PART 1
Between 9/1/2014 and 6/1/2018, 23 patients with malignant glioma were registered in the CT MMP and received a card. Of these 23 patients, 15 patients took a daily cannabis oil supplement for at least 6 months during their treatment, and 7 patients used cannabis products only as needed. 3 patients are still alive, all in the daily cannabis oil group (41, 54 and 77 months). The median overall survival in the daily group was 22.0 months, versus 16.9 months in the as needed group.

PART 2
Since 9/1/2014, 71 patients with malignant glioma were certified for the CT MMP. Of these 71 patients, 15 did not complete the patient registration process and did not receive a card for the MMP. As of 5/15/2021, of the 56 registered patients, there are 20 Active patients and 36 Inactive patients. Regarding the Inactive patients, 29 have died and 7 are alive but did not renew their card. Amongst Active patients, 4 are currently taking a daily cannabis oil supplement as a complementary therapy, and 16 are currently using cannabis products only as needed for symptoms. The 4 patients employing complementary therapy currently have a survival of 8, 31, 33, and 35 months.

CONCLUSION
In my experience, complementary cannabis treatment is well tolerated in malignant glioma patients, and can provide significant palliative benefit to treat insomnia and nausea. Serious adverse events attributed to cannabis products, or decreased survival, have not been observed.
QOLP-04. THE KETOGENIC DIET PLUS STANDARD CARE FOR RECENTLY DIAGNOSED GLIOBLASTOMA: A PHASE 1 SAFETY AND FEASIBILITY TRIAL
Authors: Hu Jethro , Amaral L J , Gresham Gillian , Nelson Thomas , Welborn Amelia , Lockshon Laura , Tighiouart Mourad , Kim Sungjin , Noorvash Brandon , Mack Alexandra , Rudnick Jeremy , Phuphanich Surasak , Irwin Scott , Freedland Stephen 
Published: November 2021

Abstract

INTRODUCTION
There is abundant interest in the potential therapeutic and supportive role of a ketogenic diet (KD) for glioblastoma patients. We conducted a single-arm phase 1 trial to assess the safety and feasibility of KD plus standard-of-care (SOC) in glioblastoma patients (NCT03451799).

METHODS
Adults within 3 months of diagnosis participated in a 16-week intervention of a classic 3:1 KD (grams fat : grams carbohydrate + protein) with dietitian support. Blood glucose and ketone levels were assessed twice daily (Keto-Mojo), with remote monitoring of daily weight and activity (Fitbit). The primary objective was to assess safety (weight stability, CTCAE) and feasibility (maintaining ketosis &gt; 0.3mM for &gt; 50% of study period). Secondary objectives included assessments of progression-free survival (PFS), overall survival (OS), health-related quality of life (HRQOL), and cognition (MoCA).

RESULTS
From 04/2018-02/2021, 14 patients were evaluable: female:male, 8:6, median age 55 years, KPS 80, BMI 24.5. MGMT promoter methylation: 6 present, 7 absent, 1 indeterminate. Adherence to KD was high, with all patients maintaining ketosis ( &gt; 0.3mM) &gt; 50% and 11 patients maintaining ketosis &gt; 85% of study days. Adverse events (&gt; Grade 2) potentially attributable to KD: appetite loss (Grade 2: 2); fatigue (Grade 2: 5); flu-like symptoms (Grade 2: 1); constipation (Grade 2: 5, Grade 3: 1). No patients were removed from study for safety reasons. HRQOL was stable, with improvements in role function (not statistically significant). MoCA score improved in 10/14 patients. Median PFS and OS from KD initiation were 11.7 and 29.1 months, respectively.

CONCLUSION
Our findings suggest that a supervised KD plus SOC is safe and feasible in glioblastoma patients. KD was well-tolerated with encouraging trends in HRQOL and cognition. PFS and OS in this small trial compare favorably to historical control. A multicenter phase 2 trial powered to assess efficacy is planned.
QOLP-05. HEALTH-RELATED QUALITY OF LIFE IN LOW-GRADE GLIOMA SURVIVORS 26 YEARS AFTER DIAGNOSIS
Authors: Boele Florien , Reijneveld Jaap , Hamer Philip de Witt , van Thuijl Hinke , Wesseling Pieter , Lagerwaard Frank , Taphoorn Martin , Kouwenhoven Mathilde , Snijders Tom , Douw Linda , Klein Martin 
Published: November 2021

Abstract

BACKGROUND
Patients with low-grade gliomas (LGGs) often survive for many years, yet little is known about patients’ health-related quality of life (HRQOL) in long-term survivorship. We previously investigated HRQOL in LGG patients diagnosed on average 6 years prior to assessment (T1, N=195) with a follow-up in stable patients on average 12 years after diagnosis (T2, N=65). We present a final follow-up of LGG survivors (T3), now decades after diagnosis.

METHODS
Patients completed questionnaires to assess HRQOL (Short Form-36 Health Survey; EORTC-BN20), fatigue (Checklist Individual Strength (CIS)), and depressive symptoms (Center for Epidemiological Studies-Depression Scale (CES-D)). Changes over time (T1-T2-T3) on group level and participant level were assessed.

RESULTS
Of the 65 patients approached, 18 (27.7%) were deceased, 3 (4.6%) experienced tumour progression to WHO III, 7 (10.8%) declined, and 3 (4.6%) could not be contacted. Thirty-four patients (52.3%) participated (missing HRQOL data N=2; N=32 included in analysis). Survivors were M=52.0 (sd=11.3) years old and diagnosed M=26.2 (sd=3.7, range:19-35) years prior. On group level, a statistically significant (but not clinically relevant) improvement in mental health (p=0.049), and a clinically relevant (but not statistically significant) decline in emotional role functioning was found. Minimal detectable change in HRQOL scale scores over time was observed in individual participants (28.1% only improvement; 25.0% only decline; 21.9% both improvement and decline) with 25.0% remaining completely stable. At T3, 25.0% and 53.1% of survivors scored above the cut-off for high risk of depression (≥16 CES-D) and severe fatigue (≥35 CIS), respectively.

CONCLUSION
In LGG survivors, assessed decades after diagnosis and treatment, HRQOL does not appear to be greatly impacted during survivorship. However, depressive symptoms and fatigue remain relatively common. Findings can help inform patients, their families, and clinicians and can serve as a benchmark for treatment trials evaluating interventions that can have very long-term effects.
QOLP-07. EXPLORING CALM IN PATIENTS WITH HIGH-GRADE GLIOMA
Authors: Loughan Ashlee , Willis Kelcie , Lanoye Autumn , Braun Sarah , Rodin Gary , Davies Alexandria , Svikis Dace , Mazzeo Suzanne , Thacker Leroy , Malkin Mark 
Published: November 2021

Abstract

BACKGROUND
Patients with high-grade glioma report substantial psychological distress, yet are frequently excluded from psycho-oncology research. Managing Cancer and Living Meaningfully (CALM) is an expressive-supportive psychotherapy designed to address the inevitable challenges that patients with advanced cancer face. CALM was shown in a large randomized controlled trial to reduce depression and death-related distress, but brain cancer was an exclusion criterion.

METHODS
In this ongoing ORBIT Model Phase Ib Refine trial, 10 adults with high-grade glioma and heightened distress (PHQ/DADDS) participated in CALM. Feasibility and acceptability were assessed based on established metrics, satisfaction was explored by surveys and exit-interviews, and preliminary efficacy of reducing distress was analyzed by pre to post-CALM paired t-tests; effect sizes estimated using Cohen’s d.

RESULTS
Of 11 patients referred and screened, 10 enrolled in the study (91% enrollment rate; 70% GBM; 70% female; M age =55yrs). Reasons for withdrawal was disinterest in intervention topics (n=2). Eight patients completed baseline assessments and at least one CALM session. To date, seven have completed treatment. Retention is 63%, with one participant still in active treatment. No adverse events were determined to be study-related. Perceived benefit was high (4.8/5), and all participants reported they would recommend program to others. Pre- to post-CALM analyses show medium-to-large effects on reducing depression (d=1.2), anxiety (d=.74), and death-related distress (d=.54). Small effects were seen for quality-of-life improvement (d=.26). Fear of cancer recurrence worsened (d=.75).

CONCLUSIONS
Preliminary data suggests that CALM is both feasible and acceptable in adult patients with high-grade glioma. Enrollment and retention rates were adequate. Patients reported high benefit and recommendation to others. Depression, generalized anxiety, and death-related distress all improved with medium-to-large effects, suggesting CALM may be a promising intervention for high-grade glioma patients as they navigate the challenges of brain cancer. Adjunctive treatment may be necessary to address fear of cancer recurrence.
QOLP-08. THE LANDSCAPE OF EPILEPSY ASSOCIATED WITH DIFFUSELY INFILTRATIVE GLIOMAS
Authors: Drumm Michael , Templer Jessica , Bushara Omar , Unruh Dusten , Walshon Jordain , Javier Rodrigo , McCortney Kathleen , Burdett Kirsten , Kurz Jonathan , Swanson Geoff , Horbinski Craig 
Published: November 2021

Abstract
Seizures are among the most prevalent co-morbidities associated with glioma, and pose a serious threat to patients. Our prior work showed that IDH mutation (IDHmut) was associated with much greater seizure frequency at the time of initial glioma diagnosis. However, less is known about the variables that contribute to seizure risk throughout the course of disease. We therefore collected data from 247 patients with grade 2–4 glioma, and determined seizure risk using Kaplan-Meier survival probabilities and multivariable cox regression analyses. Median follow-up of IDH wildtype (IDHwt) and IDHmut glioma patients was 15 months and 36 months, respectively. Incidence of pre-operative seizures for IDHwt and IDHmut patients was 75/168 (45%) and 60/79 (76%), and incidence of post-operative seizures was 70/168 (42%) and 43/79 (54%), respectively. Patients who had a pre-operative seizure had a shorter time to their first post-operative seizure than patients who never had a pre-operative seizure in both IDHwt (P&lt; 0.0001) and IDHmut (P= 0.039) cohorts. Among IDHmut glioma patients, those with subtotal resections developed post-operative seizures faster (median time to first seizure= 9.9 months) than those with gross-total resections (median not reached) (P= 0.0005), but a similar pattern was not observed in IDHwt glioma patients (P= 0.20). Those with IDHmut astrocytomas more quickly developed post-operative seizures (median= 11.1 months), compared to those with IDHwt astrocytomas (24.9 months) or IDHmut oligodendrogliomas (median not reached) (P= 0.033). Tumor progression closely followed post-operative seizures in patients with IDHwt gliomas when either their first post-operative seizure occurred longer than 6 months following resection, or when their post-operative seizures worsened in quality. These data suggest the best predictors of post-operative seizures are as follows: the presence of pre-operative seizures; extent of surgical resection; IDHmut status. These data will help clinicians better manage glioma patients by identifying those at greatest risk of seizures.
QOLP-12. ILLNESS UNDERSTANDING AND PERCEPTIONS ABOUT PROGNOSIS IN PATIENTS WITH MALIGNANT GLIOMAS AND THEIR CAREGIVERS
Authors: Rhee John , Mesa Michelle , Kaslow-Zieve Emilia , Traeger Lara , El-Jawahri Areej , Temel Jennifer , Forst Deborah 
Published: November 2021

Abstract

BACKGROUND
Malignant gliomas (MG) are incurable tumors with limited survival. Prognostic awareness is essential for informed decision making, but patients’ and caregivers’ perceptions about their illness and prognosis are not well understood.

METHODS
We conducted a prospective, single-institution study in patients with newly diagnosed MG and their caregivers, following the outpatient visit in which their neuro-oncologist disclosed pathology results and discussed treatment options. Participants (patients and caregivers) completed the Prognosis and Treatment Perceptions Questionnaire to assess information preferences, treatment goals and prognostic understanding.

RESULTS
Of patients approached, 82% (14/17) were eligible and enrolled in the study. The majority of patients were male (9/14, 64%), median age 60 years (range 26-76) and had a glioblastoma (11/14, 79%). Most caregivers were female (8/11, 73%) and married to the patient (7/11, 64%). The majority of patients said their cancer was curable (10/13, 77%, one patient did not answer), while only 3/11 caregivers (27%) said the patient’s cancer was curable. Furthermore, 7/13 patients (54%) and 8/11 caregivers (73%) reported that their oncologist said their cancer was not curable, and the remainder (6/13 patients, 46% and 3/11 caregivers, 27%) said the oncologist “did not say” whether it was curable. Most patients (10/14, 71%) and caregivers (8/11, 73%) expressed a tendency to focus on the best-case scenario in response to information from their oncology team about their cancer.

CONCLUSION
Although most patients with MG and their caregivers acknowledged being told that their cancer was incurable, the majority of patients reported that their cancer was curable. Patients and caregivers often reported focusing on the best-case scenario regarding their cancer. Further investigation is warranted to explore strategies to support patients and caregivers learning about their incurable cancer.
QOLP-22. THE PSYCHO-ONCOLOGICAL BURDEN OF PATIENTS WITH AGGRESSIVE MENINGIOMA – RESULTS FROM A RETROSPECTIVE CROSS-SECTIONAL STUDY
Authors: Jungk Christine , Raedel Madlen , Mattern-Tremper Julia , Warta Rolf , Herold-Mende Christel , Unterberg Andreas 
Published: November 2021

Abstract
Despite the perception of meningioma as a benign disease, up to 35% of patients experience a clinically aggressive course with debilitating treatment and poor outcome. In contrast to the growing interest in novel therapies, the impact on health-related quality of life (HRQoL) is still understudied. Here, we analysed the psycho-oncological burden of patients with aggressive meningioma. Our institutional cohort was searched for meningioma patients with surgery as first intervention and HRQoL was assessed retrospectively at one time point with standardized self-assessment questionnaires (HADS-D, EORTC-QLQ-C30). Aggressive meningioma was defined as WHO grade 2 or 3 or recurrence of a WHO grade 1 meningioma within 5 years after index surgery. Results were correlated with demographic, tumor- and treatment-related factors by multivariate linear regression and compared to internal control patients (WHO grade 1 meningioma, no recurrence within the first 5 years). 400 out of 653 patients returned the questionnaires (62%). Of those, 95 patients (24%) were classified as aggressive meningioma while 305 patients served as internal control. Patients with and without aggressive meningioma differed with regard to sex (p=0.019), age (p=0.015), extent of resection (p&lt; 0.0001) and adjuvant radiotherapy (p&lt; 0.0001) at index surgery and KPS at 1st follow-up (p=0.037). 34% and 24% of aggressive meningioma patients were screened positive on the anxiety and depression subscales of HADS-D as opposed to 33% and 23% of internal controls (not significant). Aggressive meningioma patients fared significantly worse on most of the function scales of QLQ-C30 (QL: p=0.004; PF: p=0.049; RF: p=0.003; CF: p=0.01; SF: p=0.018) and reported more financial difficulties (FI: p=0.015). In multivariate regression analysis, female sex, KPS at 1st follow-up &lt; 70 and aggressive meningioma were independent factors of impaired HRQoL. This cross-sectional analysis demonstrates that HRQoL is impaired in aggressive meningioma patients who should be screened and treated for their psycho-oncological needs.
QOLP-28. COMPARING KNOWLEDGE OF AND BELIEFS ABOUT PALLIATIVE CARE AMONG NEURO-ONCOLOGY PATIENTS, CAREGIVERS, PROVIDERS AND A NATIONALLY-REPRESENTATIVE U.S. SAMPLE
Authors: Johnson Margaret , Khasraw Mustafa , Kim Jung-Young , Cort Nicole , Herndon James , Ramirez Luis , Lipp Eric , Landi Daniel , Desjardins Annick , Friedman Henry , Ashley David M , Affronti Mary , Casarett David J , Peters Katherine B 
Published: November 2021

Abstract

INTRODUCTION
There is increasing recognition that palliative care (PC) can benefit patients with advanced cancers. However, early referral to PC is not yet a reality for patients diagnosed with a primary brain tumor. We hypothesize that lack of knowledge and/or misperceptions regarding PC by patients, caregivers, or their providers remain barriers.

METHODS
This is an IRB-exempt, one-time QR-accessible REDcap questionnaire administered to patients, caregivers, and providers at the Preston Robert Tisch Brain Tumor Center between September 2020 and May 2021. We administered 9 questions regarding knowledge and beliefs about PC from the Health Information National Trends Survey 5, Cycle 2: results of this nationally representative U.S. sample are publicly available and used for comparison.

RESULTS
We had 141 survey respondents: 25 providers, 59 patients, and 57 caregivers. The median patient and caregiver ages were 49 (21-74) and 50 years (24-73), respectively. Caregivers were more likely female (55.2 %) and identified as a spouse or domestic partner (58.2%). Providers, were equally distributed by years of experience. Compared to patients and caregivers, providers reported more baseline knowledge of PC (p&lt; 0.0001, p&lt; 0.0001) and better understood the role of PC in pain/symptom management (p=0.0038, p=0.0087) and social/emotional support (p=0.0044, p=0.0279). Interestingly, most providers (76.0%) disagreed with the statement “the goal of palliative care is to give patients more time at the end of life.” Compared to a general U.S. sample (n=1,162) our patients (n=39) were better informed in only 2 of 9 questions. Whereas, caregivers (n=48) were better informed in 6 of 9 questions.

CONCLUSION
Neuro-oncology providers were knowledgeable, but a minor gap in understanding the goal of PC was identified. Caregivers were overall more knowledgeable than patients. However, Neuro-oncology patients, had similar knowledge and beliefs compared to a nationally representative sample. PC interventions should prioritize filling knowledge gaps for Neuro-oncology patients.
RTID-05. THE MULTI-ARM GLIOBLASTOMA AUSTRALASIA (MAGMA) TRIAL
Authors: Kong Benjamin , Sim Hao-Wen , Koh Eng-Siew , Gan Hui , Barnes Elizabeth H , Yip Sonia , Nowak Anna K , Lau Peter , Cuff Katharine , Khoo Eric , Lwin Zarnie , Cooper Adam , Dowling Anthony , Linton Anthony , Harrup Rosemary , Dunlop Tracey , Hovey Elizabeth , Parkinson Jonathon , Jeffree Rosalind , Hall Merryn , Tu Emily , Andrew Diana , Simes John , Gedye Craig 
Published: November 2021

Abstract

BACKGROUND
Survival outcomes for patients with newly diagnosed glioblastoma have not changed significantly since the introduction of concurrent temozolomide with post-surgical radiation followed by adjuvant temozolomide.

METHODS
Multi-Arm Glioblastoma Australasia (MAGMA) is a recently initiated phase III multi-arm, multi-centre randomized trial for patients with newly diagnosed glioblastoma, led by the Australian Cooperative Trials Group for Neuro-Oncology (COGNO), that will concurrently test multiple treatment questions. Initially, a partial factorial design will be implemented to compare the current standard of care with either or both of (1) neoadjuvant temozolomide and (2) aduvant temozolomide continued beyond six months until progression. MAGMA will transition to a multi-arm multi-stage (MAMS) design as additional tratment question are introduced. Treatment allocation to each question will be balanced (1:1) using minimisation over several stratification factors, including study site, age, IDH-mutation status, surgical extent and randomization to the prior treatment question(s). The primary outcome is overall survival. Secondary outcomes include progression-free survival (measured by mRANO), time to first non-temozolomide systemic treatment, clinically significant toxicity as measured by Grade 2/4 adverse events, and health-related quality of life measures. Parsimonious data collection and a streamlined assessment schedule have been incorporated to mitigate the burden of data collection (such as low grade toxicity from temozolomide), and to encourage participation in regional and rural settings. A consortium model has been adopted to foster neuro-oncology expertise and infrastructure and share academic credit and future design opportunities.

PROGRESS
Recruitment commenced in September 2020. To date, 60 patients have been recruited from an initial sample size target of 250 patients for each of these initial two treatment questions. Of these 60 patients, 45 have been randomized in Question 1 (neoadjuvant chemotherapy) whilst 50 randomized in Question 2 (prolonged adjuvant chemotherapy). To date, 14 of the 27 intended sites are open to recruitment.
RTID-06. TRENDS IN INTERNATIONAL INVESTMENT IN CHILDHOOD, ADOLESCENT AND YOUNG ADULT (CYA) BRAIN TUMOR RESEARCH 2006-2018, WITH A FOCUS ON DIFFUSE INTRINSIC PONTINE GLIOMA (DIPG)
Authors: Davies Lynne , Weinstein Amy 
Published: November 2021

Abstract
Organizations funding brain tumor research want to identify gap areas for funding individually or in collaboration and want to better understand existing project focus to maximize new project investments. The International Cancer Research Partnership and the US Coalition Against Childhood Cancer used international research portfolio data to assess the landscape of CYA brain tumor research. From 2006-2018, investment for brain tumor research increased from $13m to $73m, and as a percentage of the CYA portfolio, brain tumor research received the highest percent investment (30%) in 2018. Research into treatment had risen (from $6m to $38m) as had research into biology (from $3m to $19m) - an essential foundation for more future personalized treatments. Given the lifelong impact on survivors it was encouraging that survivorship research investment had also started to increase. While 5-year survival for CYA cancers is now over 80%, survival for Diffuse Intrinsic Pontine Glioma (DIPG) remains very low. To assess capacity for future progress, several indicators were considered. The number of new DIPG projects per year increased from an average of 3 per year (2006-2012) to 11 (2013-2018) and funding increased from $0.5m (2006) to $10m (2018). Also, by 2018, 9 projects included a training component to build future research capacity. The number of laboratories researching DIPG increased from 2 in the US (2006) to 53 institutions in 6 countries (2018). Recent years had seen increased funding for pre-clinical models essential for identifying new targets. Collaborative initiatives such as DIPG-Open and DIPG-All had been funded to collect biological samples and accelerate translation of therapeutics to the clinic. Despite evidence that 5-year survival had improved from 1% to 2%, clearly major advances need to be made in new treatments, and monitoring the funding landscape carefully to make strategic investments will be essential.