bluuebunny/crossref_metadata_2025_split huggingface dataset:
QOLP-08. UTILIZING STAKEHOLDER ENGAGEMENT TO DEVELOP A MINDFULNESS-BASED INTERVENTION FOR PATIENTS WITH GLIOBLASTOMA (GBM) AND THEIR CAREGIVERS
Authors: Donovan Laura , Driver Aurelia , Wilkie Martha , Morris Jessica , Hillyer Grace 
Published: December 2020

Abstract

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.
QOLP-15. QUALITATIVE STUDY OF DIFFERENTIAL QUALITY OF LIFE (QOL) IN SUPRASELLAR MENINGIOMA PATIENTS TREATED VIA ENDOSCOPIC ENDONASAL APPROACH VERSUS OPEN CRANIOTOMY
Authors: Khalafallah Adham , Fung Shirley , Kozachik Sharon , Valappil Benita , Shaar Hussam Abou Al , Wang Eric , Zenonos Georgios , Snyderman Carl , Gardner Paul , Gallia Gary , Rowan Nicholas , Mukherjee Debraj 
Published: December 2020

Abstract

BACKGROUND
The optimal surgical treatment of suprasellar meningiomas remains controversial. While successful surgery has historically been measured by extent of tumor resection (EOR), surgeons must also balance tumor- and patient-specific characteristics with quality of life (QoL) outcomes when considering either an open craniotomy or endoscopic endonasal approach (EEA).

METHODS
We conducted 28 in-depth individual interviews with patients diagnosed with suprasellar meningioma and treated via EEA (n=14) or craniotomy (n=14). We used a structured interview script and the transcribed interviews were independently coded by two researchers. Consensus was used to identify themes and domains of interest.

RESULTS
The overall sample (80% between 40-69 years old, 70% female, and 82% white) was largely similar between craniotomy and EEA cohorts. Tumor volumes were not different between both cohorts (p=0.2), with a combined average of 4.4 cm3 (standard error ± 0.7). Suprasellar meningiomas caused a wide range of symptoms with 21 concepts elicited. The most frequently endorsed concepts were “Vision” (n=22), “Headaches” (n=11), “Fatigue” (n=11), “Cognitive Symptoms” (n=10), “Pituitary Dysfunction – including Trouble Sleeping and Frequent Urination” (n=9), “Sinus Problems” (n=7), and “Personality Changes” (5). Both surgical approaches demonstrated improvements in vision (69.2% EEA, 66.7% craniotomy) and headaches (100% EEA, 80% craniotomy). Compared to EEA, craniotomy yielded a longer list of complications (3 vs.14) and surgery-specific symptoms (9 vs.16). More craniotomy patients reported having negative emotions (5 vs.1), new depression and anxiety (6 vs.1), financial difficulties (3 vs.1), and reduced desire/ability to pursue fun activities (12 vs.7) after surgery relative to EEA counterparts.

CONCLUSION
Suprasellar meningiomas can be debilitating with significantly impact on patients’ health and QoL. Our findings demonstrate differential effects upon patients’ post-operative QoL associated with type of surgery. Our findings support the need for measuring patient-centered, disease-specific QoL outcomes in patients undergoing craniotomy versus EEA for suprasellar meningioma resection.
QOLP-18. A CALL TO ACTION: DEATH ANXIETY IN NEURO-ONCOLOGY
Authors: Loughan Ashlee , Husain Mariya , Willis Kelcie , Braun Sarah , Brechbiel Julia , Aslanzadeh Farah , Kovalchick Laurel 
Published: December 2020

Abstract

BACKGROUND
Patients with primary brain tumors (PBT) are at increased risk for psychological distress given the certainty of tumor progression, lack of curative treatments, and poor prognoses. A specific type of distress, death anxiety, was recently identified as an area of concern among neuro-oncology patients. However, researchers have yet to fully examine the prevalence or risk-factors of death anxiety in this population, and, importantly, what evidence-based treatments may be available to alleviate symptoms.

METHODS
Adult PBT patients (N=81) completed validated questionnaires on symptoms of death anxiety, generalized anxiety, and depression. Item-level frequencies were run to determine prevalence rates. Analyses were then conducted (t-tests, ANOVAs, Pearson correlations, regressions) to determine whether certain demographic, disease-related variables, and/or symptoms of psychological distress put patients at higher risk for death anxiety. Literature on evidence-based treatment options was also reviewed.

RESULTS
Over half (50-64%) of our sample endorsed items related to fear of death, distressing thoughts about death, and fear of the future, with 35% scoring above the cut-off for death anxiety. Predictors of death anxiety included generalized anxiety symptoms, bilateral or right hemisphere tumor, and female gender (r2=0.367; F(3,77)=16.488, p&lt; .05). Younger age, lower grade tumors, and heightened depressive symptoms were associated with higher death anxiety (p&lt; .05). While interventions to reduce distress in advanced cancer populations are available, most have purposely excluded neurological cancers, thus limiting their generalizability in neuro-oncology.

CONCLUSION
The proportion of PBT patients who endorsed death anxiety aligns with other advanced cancer populations. However, item-level analysis suggests heightened concern in neuro-oncology and a need for targeted intervention. Moreover, specific demographic, disease-related, and psychological distress variables put certain PBT patients at increased risk. These findings highlight the need for routine screenings and monitoring, as well as inclusion of neuro-oncology patients in evidenced-based treatment trials for reducing distress, specifically death anxiety.
QOLP-20. A FEASIBILITY STUDY UTILIZING MINDFULNESS MEDITATION DURING CONCOMITANT CHEMORADIATION IN MALIGNANT GLIOMA PATIENTS: HEALTH-REPORTED QUALITY OF LIFE (HRQOL) RESULTS
Authors: Randazzo Dina , Buckley Evan , Herndon James , Cort Nicole , Affronti Mary , Lipp Eric , Desjardins Annick , Johnson Margaret , Landi Daniel , Ashley David , Friedman Henry , Glass Oliver , Porter Laura , Peters Katherine 
Published: December 2020

Abstract

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.
QOLP-21. A PRELIMINARY REPORT ON QUALITY OF LIFE AND SEXUAL FUNCTION IN BRAIN CANCER PATIENTS
Authors: Boccia Maria , Anyanda Elizabeth , Fonkem Ekokobe 
Published: December 2020

Abstract
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.
QOLP-23. PHASE II RANDOMISED PLACEBO-CONTROLLED DOUBLE-BLIND STUDY OF ACETAZOLAMIDE VERSUS PLACEBO FOR CEREBRAL OEDEMA IN RECURRENT AND/OR PROGRESSIVE HIGH-GRADE GLIOMA REQUIRING TREATMENT WITH DEXAMETHASONE
Authors: Agar Meera , Nowak Anna , Hovey Elizabeth , Barnes Elizabeth , Simes John , Vardy Janette , Wheeler Helen , Leonard Robyn , Hall Merryn , Tim Evonne , Spyridopoulos Desma , Sim Hao-Wen , Lwin Zarnie , Dowling Anthony , Harrup Rosemary , Jennens Ross , Kichenadasse Ganessan , Dunlop Tracey , Gzell Cecelia , Koh Eng-Siew 
Published: December 2020

Abstract

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.
QOLP-25. BASELINE QUALITY OF LIFE BURDEN IN PATIENTS WITH CENTRAL NERVOUS SYSTEM (CNS) TUMOURS TREATED WITH PENCIL BEAM PROTON THERAPY AT INDIA’S FIRST PROTON THERAPY CENTRE
Authors: Jalali Rakesh , Chilukuri Srinivas , Kumar Roopesh , Nangia Sapna , Panda Pankaj Kumar 
Published: December 2020

Abstract
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 (&gt; 50 years) had poorer global score (p &lt; 0.05). Patients with lower performance status (KPS &lt; 70) had a lower global QOL (KPS &gt; or = 80 vs. &lt; or= 70; 42 vs. 75; p &lt; 0.05) including in all histological types of high-grade gliomas (HGG) (HGG vs. LGG; 67 vs. 59; p &lt; 0.05). Patients undergoing re-irradiation had poorer global score as compared to ones who had not received any radiation previously (p &lt; 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.
QOLP-26. USE OF MEDICAL ASSISTANCE IN DYING (“DEATH WITH DIGNITY”) IN WASHINGTON STATE PATIENTS WITH BRAIN TUMORS.
Authors: Graber Jerome , Sofie Kaite , Taylor Lynne 
Published: December 2020

Abstract
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 &lt; 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.
QOLP-27. USE OF THE NEURO-QOL COGNITIVE FUNCTION SHORT-FORM AS A TOOL FOR ASSESSING PATIENT-PERCEIVED NEUROCOGNITION FOLLOWING RADIOTHERAPY
Authors: Choi Sung , Kowalski Emily , Khairnar Rahul , Mishra Mark 
Published: December 2020

Abstract
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 &gt; 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 &gt;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.
QOLP-28. PREOPERATIVE SLEEP DISTURBANCE AND ITS ASSOCIATION WITH QUALITY OF LIFE IN ADULT BRAIN TUMOR PATIENTS
Authors: Chen Pin-Yuan , Chiu Hsiao-Yean , Lin Pei-Ching 
Published: December 2020

Abstract

BACKGROUND
Sleep disturbances are common complaints in adult brain tumor patients and impact their quality of life profoundly. The prevalence and pattern of preoperative sleep disturbances are still unknown.

MATERIAL AND METHOD
There were 36 adult patients with primary brain tumors who were recruited before craniotomy. All participants completed a battery of questionnaires, including the Athens Insomnia Scale, Epworth Sleepiness Scale, Pittsburgh Sleep Quality Index, Brief Fatigue Inventory, Hospital Anxiety, and Depression Scale, Morningness-Eveningness Questionnaire, and EORTC-QLQ-BN20. Actigraphy was put on a non-dominant wrist for obtaining objective sleep parameters, such as the dichotomy index.

RESULT
The prevalence of preoperative insomnia, poor sleep quality, excessive daytimes sleepiness, and circadian disruption were all high but similar between benign and malignant brain tumor groups. Patients with glioma had poorer quality of life. Insomnia was the only sleep disturbance that significantly associated with quality of life in a multivariate linear regression modal.

CONCLUSION
Sleep disturbances are common in adult brain tumor patients. Insomnia worse the quality of life of these patients. A further longitudinal investigation of sleep disturbances and quality of life in brain tumor patients is worthful.