bluuebunny/crossref_metadata_2025_split huggingface dataset:
P22.16.A THE EXPERIENCE OF LIVING WITH MALIGNANT MENINGIOMA
Authors: Maier A D , Nordentoft S , Mathiesen T , Guldager R 
Published: October 2024

Abstract

BACKGROUND
Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1-3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis.

MATERIAL AND METHODS
This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke’s guidelines.

RESULTS
Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals.

CONCLUSION
We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients’ identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.
P22.17.B THE NEURO-ONCOLOGICAL CAREGIVER ROLES AND RESPONSIBILITIES - A QUANTITATIVE SURVEY
Authors: Smith V R , Kjærgård S S , Piil K 
Published: October 2024

Abstract

BACKGROUND
In Denmark, cancer treatment is increasingly offered on an outpatient basis. This adds a responsibility on the caregivers, who often handle treatment agreements, provide 24/7 care, and offer practical support within the home environment. Especially, caregivers of individuals with brain cancer due to the disease’s unique characteristics, including cognitive and physical alterations. Qualitative exploration of the caregiver role has been undertaken, but there remains a notable absence of quantitative measurements regarding the burden faced by neuro-oncological caregivers. Therefore, this study aimed to quantitatively investigate the impact of caregiving on individuals caring for brain cancer patients.

MATERIAL AND METHODS
A cross-sectional study was conducted. The questionnaire used was the validated and standardized questionnaire “Caregiver roles and responsibilities scale” (CRRS). It consists of 51 questions grouped into 6 core areas: Support and Impact, Lifestyle, Emotional Health and Well-being, Self-care, Financial situation, and Work and Career. Responses are scored on a 5-point Likert scale ranging from 0 (“not at all”) to 4 (“very much”). The CRRS questionnaire has an official scoring guideline that calculates a score ranging from 0-152, in which 0 accounts for the most burdened, and 152 the least burdened. However, there isn’t a specific cut-off score to indicate when the CRRS score should raise concern. The questionnaire was distributed for two weeks to all caregivers attending the neuro-oncology outpatient clinic at Rigshospitalet.

RESULTS
Included were 27 primary caregivers (out of 30 eligible). 64% were female, and age was categorized in under 65 (younger) and over 65 (older); with a range from 39 to 80 years old. Data indicated that the younger caregivers (CRRS score = 87), those being in the initial 6 months of the disease (CRRS score = 85), and those receiving minimal to no practical assistance from family and friends (CRRS score = 90) were at a higher risk of burden, compared to those being older (CRRS score = 103), in the stage of 12-24 month post-diagnose (CRRS score = 106) and who received moderate to substantial support (CRRS score = 101). 18% of women rated their physical health as impaired to a large degree due to the patient’s disease, and none of the men noted this.

CONCLUSION
The CRRS questionnaire could serve as a valuable screening tool to identify the specific support required by individual caregivers. The study indicates that female caregivers under the age of 65, particularly within the initial 6 months of the disease onset, and those lacking practical support from friends and family, tend to experience elevated levels of burden. The study’s findings do not specify the frequency or timing for administering the CRRS questionnaire as a screening tool, initial steps could involve integrating the screening process within the first six months of caregiving.
P22.18.A THE SEVERITY OF ANXIETY AND DEPRESSION SYMPTOMS AND QUALITY OF LIFE IN PATIENTS WITH LOW-GRADE GLIOMAS
Authors: Olejnik A , Bala A , Dziedzic T , Marchel A , Kunert P 
Published: October 2024

Abstract

BACKGROUND
Depression, anxiety, and reduced quality of life are frequent problems in patients with brain tumors. Objective of the current study was to examine quality of life level and its correlation with different clinical and demographic factors among patients diagnosed with Low Grade Gliomas (LGG).

MATERIAL AND METHODS
The study involved 55 individuals with a possible diagnosis of low-grade glioma based on MRI examination. The final analysis included only the data collected from 48 patients whose diagnosis of LGG was confirmed by histological and genetic examination, as well as 48 demographically matched healthy control individuals. Before the surgical procedure, when neither the histological nor the genetic diagnosis had been established, each patient filled out a questionnaire to ensure the outcomes would not be affected by this information. The Hospital Anxiety and Depression Scale (HADS), the World Health Organization Quality of Life questionnaire (WHO-QoL-BREF), and a demographic-clinical questionnaire were used in the study.

RESULTS
Intergroup comparisons indicated that patients with LGG reported a lower quality of life than healthy individuals (p &lt; 0.05). According to the HADS scale responses, patients with LGG experienced significantly more severe depression and anxiety symptoms, than healthy individuals (p &lt; 0.001). Correlational analysis revealed a significant negative correlation between almost all subscales of quality of life and the severity of depression symptoms: QoL - physical scale (p &lt; 0.05), QoL - psychological scale (p &lt; 0.05), QoL - social scale (p &lt; 0.05). Additionally, older patients reported a poorer quality of life compared to younger patients. The gender of the participants did not correlate with the quality of life.

CONCLUSION
Patients with LGG experience a decline in quality of life. Objective neurological deficits, epilepsy, as well as awareness of the cancer diagnosis, may be associated with the occurrence of depressive and anxiety symptoms, such as low mood, loss of interest, difficulties in social functioning. Acknowledging these factors and integrating them into the care of patients with LGG is essential for providing sufficient psychological support and improving their psychological well-being. Further research is necessary to assess the quality of life of patients after surgery, to exclude the impact of stress associated with waiting for the procedure, as well as to assess potential changes in quality of life during the recovery period.
P23.04.A DIZZY, DODDERY AND DISCOMBOBULATED: EXPLORING SYMPTOMS OF DIZZINESS AND IMBALANCE IN VESTIBULAR SCHWANNOMA TREATABLE WITH SRS AT A TERTIARY CANCER CENTRE
Authors: Jethwa J , Williams L , Davenport S , Adonis A 
Published: October 2024

Abstract

BACKGROUND
Vestibular schwannoma (VS), a brain tumour of the vestibulocochlear nerve, causing auditory and vestibular symptoms. Dizziness and associated fatigue, cognitive changes and anxiety are shown to have the biggest impact on quality of life and ability to work. The National Institute for Health and Care Excellence (2021) and Tessa Jowel Brain Cancer Mission (2024) recommend patients with brain tumour have early and ongoing access to specialist therapy assessment and rehabilitation. However, assessment of vestibular symptoms is not included in VS guidelines, nor is it included in routine assessment for those with VS at The Royal Marsden Hospital (RMH). Consequently, symptom burden for those with VS is unclear at RMH. Without a defined rehabilitation pathways, this affects equity of access to vestibular rehabilitation locally. The aim of this study was therefore to understand vestibular symptoms in VS, describe the patient profile, and identify improvements to local VS services.

MATERIAL AND METHODS
An observational study assessed vestibular function in VS using a symptom questionnaire, Dizziness Handicap Inventory, oculomotor examination and MiniBESTest. Case-note audits identified demographics, frequency of rehabilitation referral, and rehabilitation waiting times.

RESULTS
Vestibular symptoms (dizziness, oculomotor impairment, and imbalance) and secondary symptoms (anxiety, fatigue and cognitive changes) were frequent. The majority caused mild or moderate functional impact on work or recreation. Rehabilitation need correlated significantly with a DHI score &gt;20 combined with moderate-severe functional impact. Rehabilitation waiting times significantly improved with early physiotherapy assessment. Patients reported many benefits of physiotherapy as part an MDT clinic. RMH VS population was older than the catchment population. There was no gender or race difference.

CONCLUSION
Vestibular symptoms are common and impactful in VS. Prevalence of secondary symptoms appear common and warrant formal investigation. Vestibular symptoms, secondary symptoms, and the functional impact of these should be assessed as standard practice and included in future guidelines. A DHI score &gt;20 combined with moderate/severe functional impact identified rehabilitation need, but should not replace physiotherapy as part of MDT clinic. Demographic findings showing no difference in VS incidence according to race are contrary to previous findings of increase incidence in Caucasian populations.
P23.06.A LONG-TERM OUTCOMES OF RADIOTHERAPY FOR SKULL BASE AND NECK PARAGANGLIOMAS
Authors: Alonso Becerra M , Lucas Calduch A , Macià Garau M , Garcia Exposito N , Lozano Borbalas A , Plans Ahicart G , Rosselló Gómez A , Fernández Coello A , Vidal Sarro N , Modolell Farré I , Sancho Kolster I , Majós Torró C , Pons Escoda A , Simó Parra M , Velasco Farga R , Cifré Serra P , Bruna Escuer J , Álvarez Renuncio A , Lin Y , Martínez Ávila L , Moretti M , Ruiz Domínguez M , Martín González L , Balcells Quintana C 
Published: October 2024

Abstract

BACKGROUND
Management of skull base and neck paragangliomas remains controversial, with treatment options including observation, surgery, embolism, and radiotherapy, either alone or in combination, depending on tumor size and patient comorbidities. Surgical interventions, including embolism, can risk complications involving lower cranial nerves and bleeding, which is a significant downside for benign tumors. Radiotherapy has been described as a feasible option for growing or symptomatic unresectable paragangliomas, providing both local control and minimal side effects.

MATERIAL AND METHODS
A retrospective analysis was conducted on patients undergoing radiotherapy, with or without previous approaches, at our institution.

RESULTS
From January 2009 to December 2022, 19 patients with skull base and neck paragangliomas underwent radiotherapy. Median age at treatment was 61 years (range 39-85), being 79% male and 21% female. Eight patients (42%) had been previously treated with surgery (4 patients) or embolization (4 patients). The rest of the patients (58%) were treated only with radiotherapy. Most paragangliomas were jugular (57%), while the remaining were tympanic (16%), jugulotympanic (16%), and carotideal (2%). Depending on the volume of treatment, two modalities of radiotherapy were decided. Most patients (84%, 16 patients) were treated with fractionated stereotactic radiotherapy (FSRT) (50 Gy in 25 fractions), with a median Planning Target Volume (PTV) of 43.1 cm3 (range 4.2 - 157.7). The other group (16 %, 3 patients) received radiosurgery (single dose of 15 Gy), with a median PTV of 1.1 cm3 (range 0.87 - 1.53). Clinical and radiologic outcomes were assessed over a median follow-up of 61 months (range 8-155). Two patients were lost from follow-up. No late toxicities were observed. Symptom relief was achieved in all cases, at least partially. There was no clinical worsening related to radiotherapy at long term follow up. Radiologically, local control was obtained in 94.7% of patients: all lesions remained stable, with no significant shrinkage, except for one paraganglioma treated with FSRT that progressed.

CONCLUSION
Paragangliomas can be successfully treated with radiotherapy, with a high local control probability at long term follow-up, with low acute toxicity and without worsening of previous symptoms.
P24.01.A A UK-WIDE SURVEY OF THE HOLISTIC NEEDS OF SELF-IDENTIFIED CLINICALLY VULNERABLE PATIENTS WITH A NEW DIAGNOSIS OF GLIOMA
Authors: Lorimer C , Jameson M , Thomson A , Ali U , Bulbeck H , Byrne A , Cooper S , Meldrum S , Melhuish S , Mills S , Oberg I , Robson S , Brock J 
Published: October 2024

Abstract

BACKGROUND
A multidisciplinary research group, established by NCRI, identified that research into holistic needs of patients with malignant gliomas and their caregivers remains sparse. A large proportion of patients in this cohort are considered ‘clinically vulnerable’ including older and frail patients. This UK wide survey sought to identify key areas requiring greater research and intervention with a specific focus on the clinically vulnerable subgroup.

MATERIAL AND METHODS
Patients who identified as clinically vulnerable by themselves or their caregiver and had received a diagnosis of glioma were invited via leaflets and social media platforms to respond to a 21 question online survey, hosted by BrainsTrust. Questions focussed on support, information and treatments offered at initial diagnosis. Quantitative and qualitative data was collected and analysed using descriptive statistics and narrative analysis.

RESULTS
The survey received 70 responses; 57 patients, 13 caregivers. 47 female, 23 male. The mean age of respondents was 46 (range 21-76 years). 64% of respondents felt listened to by their medical team, however only 43% of respondents felt they fully understood the information they received in the consultation. Only 29% reported remembering all the information they were given once home, fewer than half (47%) of respondents received written information to take away. 50% respondents felt that all and 33% felt that some of their questions were answered by their medical team. Only 50% of respondents reported being assigned a key worker, and 43% felt they could contact their key worker when they needed. Questions regarding specific needs gave great insight into areas where these needs are not being met; 70% wanted support with fatigue, with 36% actually receiving this, 47% wanted support with memory changes but only 19% received this. 49% of respondents wanted involvement from the neuropsychology team, with 26% receiving this. Conclusion: The results of this survey demonstrate areas where brain tumour care services are not meeting the needs of this self-identified clinically vulnerable patient group. Overall there was no category of need that was fully met which identifies the requirement for consistently structured assessment and intervention.
P24.02.A INSIGHTS FROM A CASE OF TRANSTENTORIAL HERNIATION IN A LEFT ANTERIOR-THIRD PARASAGITTAL MENINGIOMA PRIOR TO SURGERY: A SYSTEMATIC REVIEW AND ILLUSTRATIVE CASE
Authors: Torio J R , Buenviaje V , Meceda E 
Published: October 2024

Abstract

BACKGROUND
Meningiomas account for one-third of all CNS tumors and categorized into three grades by the WHO. While tumor size has been identified as an independent risk factor, surgery has been established as primary treatment. Prior studies have identified links between prognosis and factors like tumor characteristics and patient demographics, yet studies regarding outcomes of patients with pre-operative herniation complicated by socio-economic delays in treatment remains unexplored, prompting our study to investigate this specific population’s outcomes.

MATERIAL AND METHODS
We report a case of a 55-year-old female managed as a case of left anterior third parasagittal meningioma who underwent Bifrontal craniotomy excision of tumor (Simpson I) with resection of anterior third superior sagittal sinus and did a systematic search using MeSH keywords “Meningioma”, “Herniation”, and “Outcomes”. Six studies were included in the final qualitative analysis.

RESULTS
A review of six studies included 75 patients with meningiomas revealed a female predominance (66.7%) and an average age of 52.3 years, with tumors primarily located at the falx (90.67%). Surgical interventions predominantly involved gross total tumor resection (79.45%), yielding favorable outcomes in 83.09% of cases with low morbidity (13.33%) and mortality rates (1.41%), although pre-operative complications such as intratumoral hemorrhage and herniations were noted, and the recurrence rate varied across studies with a median follow-up ranging from 1 to 36 months.

CONCLUSION
Meningiomas manifest symptoms gradually depending on tumor location, with peritumoral brain edema contributing significantly to morbidity. While delays in surgery often influenced by socioeconomic factors are associated with unfavorable outcomes, underscoring the importance of timely intervention to prevent disease progression and enhance patient quality of life.
P24.04.A PATIENT AND PUBLIC INVOLVEMENT IN A NEURO-ONCOLOGICAL RESEARCH PROJECT
Authors: Nordentoft S , Guldager R , Mathiesen T , Pappot H , Piil K 
Published: October 2024

Abstract

BACKGROUND
Development and implementation of an intervention targeting a specific population can be significantly enhanced through the integration of Patient and Public involvement (PPI). The aim of this study is to apply PPI in the process of developing a supportive group intervention for caregivers to patients diagnosed with a glioblastoma.

MATERIAL AND METHODS
Establishment of a national PPI panel including current or bereaved caregivers to patients diagnosed with a glioblastoma was recruited through the Danish Brain Tumor Association (Hjernetumorforeningen). Terms of reference for the panel have been established, describing purpose, terms, and meeting format. Online Team meetings and a face-to-face co-creative workshop with the panel was conducted in corporation with the Danish Knowledge Center for User Involvement in Health Care. Next step, the level and value of caregiver involvement will be measured by using the Patient Engagement in Research Scale (PEIRS-22), to gain knowledge on how meaningful the caregivers experienced their engagement in the research process.

RESULTS
A national panel of current and bereaved caregivers (n=10) was engaged in the PPI-process and provided valuable knowledge to the development of the intervention. Ongoing online Team meetings were held every second month with the panel, video-recorded, and subsequently transcribed. This process aimed to identify themes within the topics discussed with the panel and to ensure inclusion of the caregivers’ insight and needs in the design of the intervention. The purpose of the workshop was to target the further development of the intervention and to gain more structure in the design. Creating a collaborative PPI-process with the panel included thorough preparation for each meeting with a pre-distributed agenda. Preparing the caregivers for the topics to be discussed, ensured to gain the requested information, and meanwhile creating an open and inviting forum were important element of the process.

CONCLUSION
PPI in current co-creating process was a time consuming yet valuable process, where caregivers’ experiences and perspectives were addressed in the design and development of a supportive group intervention.
P25.01.B ASSOCIATION BETWEEN EXPOSURE TO AIR POLLUTION AND BRAIN TUMOR INCIDENCE IN THE UNITED STATES
Authors: Price M , Neff C , Ballard C , Hsu H , Kruchko C , Barnholtz-Sloan J S , Ostrom Q T 
Published: October 2024

Abstract

BACKGROUND
Air pollution contains known human carcinogens. Prior studies evaluating an association between pollution exposure and central nervous system tumors (BT) are inconclusive. Using multiscale geographically-weighted linear regression (MGWR), we investigated the association between average county-level air pollution and geographic variation of glioblastoma and tumors of the meninges (ToM) incidence in the United States (US).

MATERIAL AND METHODS
Annual county-level air pollution from 2000-2016 was obtained from the Environmental Protection Agency’s Air Quality Index (AQI) which analyzes daily ambient air concentration for ozone and particulate pollution in participating US counties. County-level annual age-adjusted incidence rates (AAAIRs) of glioblastoma and ToM per 100,000 population (&gt;20 years old) between 2004-2020 were estimated using data from the Central Brain Tumor Registry of the United States, which aggregates data from the Centers for Disease Control and Prevention’s National Program of Cancer Registries and the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program. Counties with missing data were excluded. The 2016-2020 American Community Survey data were used to identify county sociodemographic and average exposure indoor/workplace pollution. Spatial patterns were visualized using Moran’s I measure and the global G-statistic analyses computed in R. Variables were mean normalized and regressed in a MGWR model using county centroids in the Spatial Analysis Research Center’s MGWR 2.2 program to assess geographically-varying effects of the independent variables.

RESULTS
Data was available from 1,109 counties. Significant spatial clusters and outlier counties were identified for both tumor types (glioblastoma Moran’s I=0.126, p &lt;0.001, G-statistic=0.003; ToM Moran’s I=0.487, p &lt;0.001, G-statistic=0.003). When restricted to significantly high/low counties (p &lt;0.05), low-rate clustering for glioblastoma was observed in Alaska, Arizona, Virginia, and parts of the central mid-west. High-rate clustering was observed in parts of the north, mid-west, and northeast. ToM showed low-rate clustering in northwest, Virginia, Kansas, and parts of the north mid-west, with high-rate clustering in Washington, Utah, Colorado, and Wisconsin. MGWR model showed that in both tumor types, increased AQI (glioblastoma mean βMGWR 0.06; MoT mean βMGWR 0.12) was associated with increased tumor incidence. This association was present in 45% and 59% of counties, respectively.

CONCLUSION
This is the first study applying a MGWR model to assess geospatial associations between ambient air pollution and BT incidence, allowing for magnitude, direction, and significance of coefficients to change across geographic space. and allows for more accurate identification of geographic regions affected by potential BT health disparities.