bluuebunny/crossref_metadata_2025_split huggingface dataset:
QLTI-12. COST ANALYSIS OF EMERGENCY PROCEDURES FOR BRAIN TUMORS – WHEN YOU CAN WAIT
Authors: Campos Paiva Aline Lariessy , Araujo João Luiz Vitorino , Lovato Renan Maximillian , de Oliveira Jean Gonçalves , Veiga José Carlos Esteves 
Published: November 2024

Abstract

BACKGROUND
Neurosurgery is expensive and requires advanced technology to achieve the best outcomes, especially for brain tumors. Generally patients are prepared during consultations for a brain tumor surgery, with anesthesiology, cardiology, neuropsychology and other specialties evaluations. Ideally, the hospitalization is planned before and patient is admitted only when is in good conditions. However some patients with brain tumors are evaluated in emergency department and sometimes require urgent procedures.

OBJECTIVE
This study aimed to estimate the direct cost of specialized care for adult neuro-oncological patients considering previous scheduled procedures versus urgent surgeries and another factors that may impact decision about nonelective procedures.

METHODS
This observational economic analysis describes the direct cost of care of neuro-oncological patients in Santa Casa de São Paulo, Brazil. Only adult patients with a common primary brain tumor were included.

RESULTS
The global mortality rate considering all patients were 12.7% and 92.3% of them occurred in nonelective procedures. Also these patients had a greater infection rate and period of hospitalization. Because of this we reviewed when a patient with brain tumor really need an urgent procedure. Despite several patients are initially diagnosed through ER investigation, probably the majority could be compensated through ambulatory consultations and after admitted with better conditions. Situations in which emergency surgery are required include acute hydrocephalus and non-compensated intracranial hypertension.

CONCLUSIONS
These patients usually have difficulty access to neurosurgical evaluation and so, only look for health assistance when the disease cause severe disability. Emergency surgeries were associated with an increased rate of infections and mortality. The findings of this study could be used by policymakers for resource allocation and to perform economic analyses to establish the value of neurosurgery in achieving global health goals. severe disability. KEY WORDS: costs; brain tumor; emergency; infections
QLTI-18. TREATMENT AND OUTCOMES OF FRAIL PATIENTS WITH NEWLY DIAGNOSED HIGH-GRADE GLIOMAS: SHOULD WE CONSIDER CHANGING OUR TREATMENT APPROACH?
Authors: Sielski Neil , Reiner Anne , Schaff Lauren , Imber Brandon , Pike Luke , Carver Alan , Pentsova Elena 
Published: November 2024

Abstract

BACKGROUND
Patients with newly diagnosed high-grade glioma (HGG) and low Karnofsky Performance Status (KPS) often face challenges in receiving cancer-directed therapy. They are excluded from prospective trials, limiting the chance of developing novel therapeutic approaches.

METHODS
We retrospectively reviewed charts of patients with functional debility and newly diagnosed HGG who received radiotherapy (RT) while admitted to the inpatient service at Memorial Sloan Kettering between 2013 and 2023. Multivariable analyses were performed which associated patient demographics, KPS, histology, genetic and molecular pathology, RT duration and dose, chemotherapy, palliative/supportive care consultation, and advanced care planning documentation with overall survival (OS) and discharge location, separately.

RESULTS
Fifty-four patients were identified; median age was 68 years (range:21-86) and 28 (52%) were women. Median KPS was 50 (range:30-70). Per WHO 2021 criteria, 47 (87%) were glioblastoma, IDH wild-type and 7 (13%) were HGG not otherwise specified, diagnosed by biopsy in 30 (56%), subtotal resection in 23 (43%), and gross total resection in one. MGMT promoter methylation was performed in 39/54 and was hypermethylated in 15 (38%). All patients received RT and 52 (96%) with concurrent temozolomide; 47/54 (87%) completed planned RT, with the median dose of 4,005 cGy in 15 fractions. 13 (24%) received bevacizumab. The median length of stay (LOS) was 29 days (range:20-65). Only 17 (31%) had palliative care consultation prior to discharge. The median OS (mOS) from the last radiation treatment was 4.21 months (95% CI: 2.73, 6.63). In multivariable Cox and logistic regression, respectively, lower KPS remained the sole factor significantly associated with increased risk of death (p=0.004) and decreased chance of return home (p=0.040).

CONCLUSION
In our patient cohort, treatment was associated with prolonged LOS and poor outcomes. A clinical trial should be considered to evaluate shorter RT courses and early palliative care consultation in this patient population.
QLTI-19. PEDIATRIC NEURO-ONCOLOGISTS NAVIGATING AN ADULT WORLD: A TALE OF TWO CENTERS
Authors: Gampel Bradley , Nasany Ruham Alshiekh , Hill Colin , Kushnirsky Marina , Tejera Dalissa , Muniz Thiago , De La Fuente Macarena , Bennett Julie 
Published: November 2024

Abstract

BACKGROUND
Adolescent and Young Adult Neuro-Oncology(AYA-NO) patients are a distinct cohort with an overlap of tumors found in childhood and adulthood. For adult patients with pediatric-type Central Nervous System tumors, optimal work-flow to manage these patients is unclear.

METHODS
We examine the work-flow of pediatric neuro-oncologists starting AYA-NO clinics within two high volume adult institutions: the University of Miami(Florida, USA) and the Princess Margaret Cancer Centre(Toronto, Canada).

RESULTS
Over 18 months, the AYA-NO clinics managed 167 patients total with several key differences emerging in both institutions between the pediatric and adult work-flows. Adult providers commonly have neurology backgrounds, while pediatric providers mostly have hematology/oncology backgrounds. In pediatrics, providers typically meet the patient inpatient before pathology results, adult providers meet their patients in outpatient settings once histopathology results are available. Outpatient management in pediatric oncology centers typically includes labs, infusion centers, provider rooms, and social workers in one area while adults, due to the larger volume, have these services on separate units. Chemotherapy related differences included the primary provider for inpatient admissions and the emphasis of adult institutions on outpatient administration when feasible. Psychosocial factors such as the variety of caregivers, increased opportunity for patient autonomy in decision-making, and the increased fragmentation in care magnifies the importance of providers forming a strong rapport with AYA-NO patients. End of life care is vastly different including the inability for adult patients to receive palliative treatment in hospice care and the availability medically-assisted death.

CONCLUSION
Pediatric neuro-oncologists building AYA-NO workflows within adult settings can provide unique expertise for AYA-NO patients with pediatric-type tumors. Growing AYA-NO clinics can benefit from allocating AYA CNS specific resources such as chemotherapy/targeted therapy provider education, a dedicated hospital/clinic space, chemotherapy nursing, a care coordinator, and a social worker with experience treating this patient population.
QOL-03. CAREGIVER PROGRAM IN NEURO-ONCOLOGY: UCSF EXPERIENCE CARING FOR MORE THAN 4,000 CAREGIVERS OVER THE LAST 10 YEARS
Authors: Taylor Jennie , Page Margaretta , Almaraz Eduardo Rodriguez , Vo Anh Huan , Velasco Candice , Angelo Desiree , Demayo Cherrie , Chang Susan 
Published: November 2024

Abstract

BACKGROUND
Caregivers of patients with primary brain tumors are at high risk for distress as they navigate caring for their loved one with both a cancer diagnosis and neurologic disorder. The UCSF Gordon Murray Neuro-Oncology Program, the first of its kind, addresses caregiver needs and is fully integrated into clinical care, providing personalized care and programming to address common challenges and foster resilience. The Program includes a nurse, administrator, and social worker. Referrals occur at the initial clinic appointment; from clinical staff; and caregivers of patients with GBM receive proactive outreach. Dedicated programming provides educational materials around common concerns and building community through support groups, annual retreats and family camp. We report our practical experience of the Program serving over 4,000 caregivers.

METHODS
Total number of individual caregivers were included from 01/2014 – 12/2023. Detailed demographics were extrapolated during clinical interviews from a subset. Caregiver concerns and interventions were extracted from the medical records between 01/2017 – 12/2023.

RESULTS
The Program serves an average of 400 caregivers and 800 encounters annually. Demographics revealed 66% females; 77% between 41-64 years of age; 60% spouse; 89% working full time; and 30% with children at home. The most common concerns were informational (42%), followed by emotional (25%), and practical (23%). Examples of informational concerns included desire for resources, understanding treatment plan/side effects, and patient behavioral changes. Emotionally, they feel overwhelmed, uncertain, and sad. Practical concerns included physically caring for patients and issues around medical insurance, disability, and finances. Most common intervention was providing emotional support (40%).

CONCLUSIONS
Caregivers of patients with primary brain tumors are at high risk of distress and have unique needs. Our practical 10 year experience of a dedicated, fully integrated, caregiver program highlights real world concerns of caregivers and identifies opportunities to develop tailored interventions to address these needs.
QOL-04. THE UNDER-UTILIZATION OF PALLIATIVE CARE SERVICES BY PATIENTS WITH GLIOBLASTOMA HIGHLIGHTS THE IMPORTANCE OF DISCUSSIONS AROUND PALLIATIVE CARE: A CROSS-SECTIONAL STUDY WITH CARE PARTNERS OF PATIENTS WITH GBM RECRUITED FROM FACEBOOK SUPPORT GROUPS
Authors: Robbins Lauren , James Elizabeth , Ennis Samantha , Wallace Marlee , Vreeling Anna , Lutz Barbara , Minns Laurie 
Published: November 2024

Abstract
Glioblastoma (GBM) is a terminal brain cancer that has a rapid onset and results in symptoms such as headaches, vomiting, seizures, anxiety, depression, agitation, speech impairment, memory impairment, infections, brain bleeds, mobility changes, changes in sleep patterns, and cognitive changes. Palliative care helps patients diagnosed with an incurable or chronic disease manage physical, social, and psychological symptoms and has been shown to increase survival for patients with cancer. Previous data of former care partners of patients with GBM indicated only 30% of patients used palliative care whereas 90% used hospice. To better understand the reasons for underutilization of palliative care patients with GBM, 38-question survey about the use of palliative care, type of medical center where treatment occurred, and discussions with care team members about palliative care was given to current care partners recruited from Facebook support groups in February 2024. Inclusion criteria: current primary care partner of a patient with GBM, over the age of 18, and willing to participate (IRB exempt; H24-0393). The care partner was excluded if their patient was no longer living. Of the 77 current care partners, 56 reported they did not use palliative care as part of their care team. The use of palliative care was similar among care facilities (community hospital, major medical center, university hospital, brain tumor center). When care team members discussed palliative care with patients and their care partners (n=21), 71% of the dyads used palliative care. When care team members did not discuss palliative care (n=56), the use of palliative care was much lower at 7%. Interestingly, 55% of respondents reported they would benefit from knowing more about ways to increase physical and emotional support. This data suggests discussions around palliative care increase the use of palliative care services among patients with GBM and their care partners.
QOL-06. OPTIMIZING NEUROFIBROMATOSIS CARE: A COMPREHENSIVE ECONOMIC EVALUATION OF A SPECIALIZED EXPERTISE CENTER’S IMPACT ON PATIENT OUTCOMES
Authors: Boubekri Sara , Greciet Nicolas , Annani Maria , Rousseau Julien , Labidi Moujahed , Haffaf Zaki El , Boudreau Isabelle , Saliba Issam , de Haan Emma , Tremblay Danny , Lapointe Sarah 
Published: November 2024

Abstract
Neurofibromatosis type 1 (NF1), NF2-related schwannomatosis (NF2) and other schwannomatoses represent a spectrum of genetic disorders characterized by the development of tumors on nerve tissues, profoundly impacting patients’ quality of life and posing complex challenges. Recognizing the imperative for comprehensive care delivery, we undertook to implement a Neurofibromatosis Expertise Center (CE) at the Centre hospitalier de l’Université de Montréal (CHUM), Quebec, Canada. Employing a robust analysis framework, we aimed to assess the economic viability of the CE by quantifying the Quality-Adjusted Life Years (QALYs) gained through centralized multidisciplinary neurofibromatosis care (cost-utility ratio = CAD/QALY gained). Leveraging data from validated questionnaires including the SF-6D, our preliminary analysis revealed significant enhancements in patients’ quality of life across diverse domains, including physical pain, visible cutaneous lesions, cognitive dysfunction, hearing loss, malignancies, psychiatric comorbidities, unemployment, physical disability, and social isolation. Notably, among the respondents (N = 115), patients receiving CE services reported a 12% increase in general health compared to a 25% decline among those without CE services. Moreover, 28% of CE patients reported improved overall health compared to 12% of those without CE services. Using the Work Productivity and Activity Impairment questionnaire (WPAI-GH), we found that cohorts followed in CE for ≥ 1 year (N = 45) experienced less work productivity losses compared to the most recent cohort (N = 32), which presented scores exceeding 6 on a 1-to-10 scale. We hypothesize that the establishment of the CE will yield profound improvements in patient health outcomes and alleviate financial strains on the Ministère de la Santé et des Services Sociaux du Québec (MSSS). Therefore, our next steps include discussing a strategy for funding application to the MSSS to ensure the accessibility of necessary care for patients. Continuing data collection and analysis will also provide a more comprehensive overview of patient characteristics and needs.
QOL-11. GBM PATIENTS CONTINUE TO FACE BARRIERS TO PERSONALIZED AND COMPREHENSIVE CARE THAT MAY IMPACT LONGEVITY AND QUALITY-OF-LIFE
Authors: Ostrum Quinn T , Iwamoto Fabio M , Nayak Lakshmi , Duprey Kelli , Pilkington Ed , Ellen Jacob , Robles David 
Published: November 2024

Abstract
We assessed the quality and accessibility of healthcare services provided to Glioblastoma (GBM) patients across the United States through an online survey distributed among the OurBrainBank community and partners and promoted on social media. A total of 297 patients or caregivers completed the survey (85% caregivers; 15% GBM patients). Median age at diagnosis was 57, lower than the national average of 64. 78% of our respondents described having some college education, and 69% had commercial insurance. Preliminary results revealed that 69% were informed about tumor testing. Among those informed, 64% did not have any molecular testing beyond initial diagnostic tests. For all respondents, 65% were not informed about storing tissue for future testing, and 79% reported not having their tissue stored for possible treatments or clinical trial qualification. Additionally, 52% reported no discussion of seeking a second opinion, and 64% reported not being offered enrollment in any clinical trial. Overall, people living with GBM face significant barriers to achieving comprehensive and personalized care. Lack of tumor testing and storage present missed opportunities for future access to emerging therapies that could improve individual outcomes. Over half of patients had no discussion about seeking a second opinion and were not offered enrollment in clinical trials, highlighting significant barriers to accessing life-extending or quality-of-life (QOL) improving treatments. Compared to the general population affected by GBM, survey respondents represented a disproportionately young and urban population, suggesting potential bias in who is able to respond to the survey. This may underestimate the challenges faced by patients with additional barriers. We are implementing strategies to reach a more geographically diverse participant group, particularly in rural areas. Ongoing targeted recruitment will further elucidate barriers to patient-centered care in GBM, with the potential for significant improvements in survival and QOL.
QOL-12. ELECTRONIC ASSESSMENT OF QUALITY OF LIFE IN GLIOBLASTOMA PATIENTS USING THE EORTC-QLQ-C30/ EORTC-BN20 AND THE PROMIS SYSTEM IN CLINICAL PRACTICE
Authors: Walbert Tobias , Schultz Lonni , Snyder James Matthew , Mohn Josh D 
Published: November 2024

Abstract

BACKGROUND
Patient reported outcomes are essential to guide patient-care and to maintain quality of life. We aim to further assess feasibility of computer adaptations of the Patient-Reported Outcomes Measurement Information System (PROMIS) questionnaire in the clinical setting and compare it with outcomes of the EORTC- QLQ-C30 and EORTC-BN20 questionnaires.

METHODS
Newly diagnosed patients with GBM were enrolled to assess feasibility. The PROMIS modules were selected to reflect the HRQoL domains assessed in the EORTC- QLQ-C30 and EORTC-BN20 questionnaires. PROMIS modules selected included anxiety, depression, fatigue, physical function, sleep disturbance, sleep-related impairment, social satisfaction role, applied cognitive ability and global health. EORTC instruments as well as PROMIS was answered to patients in the outpatient setting. Descriptive analysis was performed

RESULTS
43 patients with 124 PROMIS/EORTC responses were included in this analysis. 31 patients completed the survey prior to or within 14 days of start of radiation, 12 patients completed a survey outside of the radiation window, and a total of 60 completed surveys were obtained between both patient groups. The median times to complete the EORTC-QLQ-C30 and the EORTC-BN20 surveys were 4.77 (range=2.05-18.6) and 2.63 (range=1.17- 24.83) minutes respectively. For the PROMIS instruments except global health, the median times to complete different modules ranged from 0.6- 1 minute (range= 0.15-7.77). For global health, the median time was 2.35 minutes (range= 1.02-21.12). Average time to complete all PROMIS questions was 8.65 minutes (range=3.32-66.01).

CONCLUSIONS
Real-time prospective assessment of the EORTC tools is similar to the PROMIS measures. While most response times were short, the ranges suggest that select patients might struggle. Patients were offered to participate online from home for convenience, but low computer literacy, limited internet access and burden of disease might limit participation.
QOL-15. PATIENT-REPORTED PHYSICAL HEALTH-RELATED QUALITY OF LIFE PREDICTS SHORT-TERM POSTOPERATIVE OUTCOMES IN A HETEROGENEOUS COHORT OF BRAIN TUMOR PATIENTS
Authors: Chakravarti Sachiv , Kuo Cathleen , Kazemi Foad , Oak Atharv , Lucas Calixto-Hope , Croog Victoria , Kamson David , Schreck Karisa , Holdhoff Matthias , Bettegowda Chetan , Mukherjee Debraj 
Published: November 2024

Abstract
Patient-reported outcome measures (PROMs) are increasingly used to assess patients’ perioperative health. The PROM Information System 29 (PROMIS-29) is a well-validated global health assessment instrument for patient physical health, though its utility in cranial neurosurgery is unclear. To investigate the utility of preoperative PROMIS-29 physical health (PH) summary scores in predicting postoperative outcomes in brain tumor patients. Adult brain tumor patients undergoing resection at a single institution (January 2018-December 2021) were identified and prospectively received PROMIS-29 surveys during pre-operative visits. PH summary scores were constructed and optimum prediction thresholds for length of stay (LOS), discharge disposition (DD), and 30-day readmission were approximated by finding the Youden index of the associated receiver operating characteristic curves. Bivariate analyses were used to study the distribution of low (z-score≤-1) versus high (z-score&gt;-1) PH scores according to baseline characteristics. Logistic regression models quantified the association between preoperative PH summary scores and post-operative outcomes. A total of 157 brain tumor patients were identified (mean age 55.4±15.4 years; 58.0% female; mean PH score 45.5 + 10.5). Outcomes included prolonged LOS (24.8%), non-routine discharge disposition (37.6%), and 30-day readmission (19.1%). On bivariate analysis, patients with low PH scores were significantly more likely to be diagnosed with a high-grade tumor (69.6% vs 38.85%, p=0.010) and less likely to have elective surgery (34.8% vs 70.9%, p=0.002). Low PH score was associated with prolonged LOS (26.1% vs 22%, p&lt;0.001), nonroutine discharge (73.9% vs 31.3%, p&lt;0.001) and 30-day readmission (43.5% vs 14.9%, p=0.003). In multivariate analysis, low PH scores predicted greater LOS (odds ratio [OR]=6.09, p=0.003), nonroutine discharge (OR=4.25, p=0.020), and 30-day readmission (OR=3.93, p=0.020). The PROMIS-29 PH summary score predicts short-term postoperative outcomes in brain tumor patients and may be incorporated into prospective clinical workflows.
QOL-24. NEUROLOGIC AND NEUROCOGNITIVE OUTCOMES AMONG SURVIVORS OF INFANT-TYPE HEMISPHERIC GLIOMA (IHG)
Authors: Bagchi Aditi , Hanzlik Emily , Chiang Jason , Lensing Shelly , Bryndziar Martina , Ashford Jason , Singh Anjali , Khan Raja B , Gajjar Amar , Robinson Giles W , Onar-Thomas Arzu , Conklin Heather M 
Published: November 2024

Abstract

IHGs are large, hemorrhagic cerebral tumors associated with hydrocephalus, increased intracranial pressure, and herniation. Commonly diagnosed during early infancy, children with IHGs have an approximately 90% chance of overall survival when treated with surgery, chemotherapy, and, more recently, molecularly targeted therapies. However, there is limited understanding of long-term quality-of-life following treatment. Our study investigated long-term neurological and neurocognitive outcomes among IHG survivors. The medical database was reviewed for neurological sequelae and neurocognitive outcomes (intelligence [IQ], adaptive function, academic readiness) for 21 survivors. Median age of diagnosis and last follow-up were 0.8 (0.0-4.4) and 10.3 (4.8-17.6) years, respectively. Sixteen patients (76%) experienced atleast one neurological sequelae: 38% (8/21) had paresis/plegia; 24% (5/21) had spasticity, 26% (5/19) had abnormal speech, and 57% (12/21) had a long-term seizure disorder. Nine patients diagnosed with IHG at &lt; 0.5 years had significantly higher rates of dysarthria (p = 0.019) and seizure disorders (p = 0.035) in follow-up in comparison to patients diagnosed at 0.5-1 year (n=4) and &gt;1 year (n=8). Neurocognitive outcomes were available for 19 patients at a median of 6 years after diagnosis. Median IQ for the entire cohort was 68.0 (47.0-114.0), compared to normative expectations of 100 (SD = 15), with younger age at diagnosis associated with lower IQ (r = 0.36). Ten survivors experiencing seizures particularly had worse IQ scores (median 69.4 [47-101]). Survivors also had inferior outcomes in school readiness (median 46.0 [40.0-98.0]), compared to normative expectations of 100 (SD = 15), and adaptive function (median 48.0 [34.0-67.0]), compared to normative expectations of 50 (SD= 10), with younger age at diagnosis associated with lower performance for adaptive function (r = 0.45).

CONCLUSION
Children diagnosed with IHG have a high survival rate but experience substantial tumor-associated and treatment-related long-term morbidity. Future clinical trials should aim for better long-term quality of life for survivors through scientifically driven treatment modification.