Neuro-oncology Patients Research Articles

DISP-12. AN ECONOMIC STUDY OF NEURO-ONCOLOGICAL PATIENTS IN A LARGE DEVELOPING COUNTRY – A COST ANALYSIS

Abstract BACKGROUND Neuro-oncological patients require specialized medical care. However, the data on the costs incurred for such specialized care in developing countries are currently lacking; these data are relevant for international cooperation. OBJECTIVE This study aimed to estimate the direct cost of specialized care for an adult neuro-oncological patient with meningioma or glioma during hospitalization in the largest philanthropic hospital in Latin America. 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 Due to differences in the system records, the period analyzed for cost estimation was between December 2016 and December 2019. A group of patients with meningiomas and gliomas was analyzed. The estimated mean cost of neurosurgical hospitalization was US$4,166. The cost of the operating room and intensive care unit represented the largest proportion of the total cost. A total of 17.5% of patients had some type of infection, and 66.67% these occurred in nonelective procedures. The mortality rates during emergency procedures were 12.7% and 92.3%. CONCLUSIONS Emergency surgeries were associated with an increased rate of infections and mortality. The findings of this study could be used by stakeholders and policymakers for resource allocation and to perform economic analyses to establish the value of neurosurgery in achieving global health goals. KEY WORDS: costs; brain tumor; glioma; meningioma.

QLTI-12. COST ANALYSIS OF EMERGENCY PROCEDURES FOR BRAIN TUMORS – WHEN YOU CAN WAIT

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-19. PEDIATRIC NEURO-ONCOLOGISTS NAVIGATING AN ADULT WORLD: A TALE OF TWO CENTERS

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.

QLTI-16. QUALITY IMPROVEMENT PROJECT (QIPR) FOR IMPLEMENTATION OF PSYCHOSOCIAL ASSESSMENTS FOR ONCOLOGY CLINICAL CARE

Abstract BACKGROUND Patient-reported outcomes (PROs) have been used to assess individuals’ quality of life (QoL) throughout cancer treatment. Individuals with cancer often experience physical, psychological, and social challenges. It is crucial to evaluate their QoL to provide supportive care services to improve survival and treatment outcomes in real-world cancer clinical settings. Patients’ ability to engage with completing PROs is critical to ensuring PRO implementation efficacy. This QIPR (UF: 2216) examined these completion rates in coordinated medical-behavioral cancer care. METHODS Questionnaires delivered to neuro-oncology and psycho-oncology patients through the electronic health record (EHR) prior to scheduled office visits were: PROMIS – Anxiety, Depression, Pain Interference, Ability to Participate in Social Roles, and Cognitive and Physical Function. Data collection occurred from July 2023-January 2024. Descriptive statistics were calculated to assess battery completion rates. Information from the first 3 encounters following initiation of the battery into clinical practice were analyzed. RESULTS Of 906 scheduled encounters, 491 (54.2%) were attended by 280 unique patients. The battery was completed at least once by 106 (37.9%) patients. 72.6% (N=77) of these patients completed the battery at the first scheduled visit at which it was assigned. Of patients with 2 scheduled visits (N=25, 23.6%); 24.0% (N=6) completed the battery at both visits. Of patients that had 3 scheduled visits (N=12, 11.3%); 16.7% (N=2) completed it at all 3 visits. CONCLUSION Only approximately 38% of patients completed the battery at least once across 3 consecutive visits. The highest battery completion rate was at the first visit at which it was assigned. Completion rates were lower across additional visits. Future work will seek to understand barriers and facilitators of these completion rates to optimize implementation of PROs in coordinated medical-behavioral oncology care.

QOL-28. CANCER-RELATED DISTRESS IN NEURO-ONCOLOGY: PATIENTS INFORM PROGRAM DEVELOPMENT FOR ENHANCING QUALITY OF LIFE

Abstract BACKGROUND Brain tumor diagnosis and treatment result in significant negative sequelae, including cognitive decline, fatigue, and psychosocial symptoms. This study aimed to identify brain tumor patients’ sources of cancer-related distress and examine their interest in various treatment modalities targeting cognitive decline to inform program development for this underserved population. METHODS In pursuit of program development, patients with both primary and secondary brain tumors completed an anonymous survey. They reported demographics, tumor characteristics, subjective cognitive functioning; and, rated sources of cancer-related symptom distress (i.e., cognitive changes, fatigue, physical symptoms, motor functioning, balance, mood, and relationship) and interest in treatments targeting cancer-related cognitive decline (i.e., cognitive rehabilitation, mindfulness-based practices, psychotherapy, and medication). Descriptive statistics, t-tests, chi-square, and linear regressions were conducted. RESULTS Among participants (N=137, Mage=49.6±15.8, 58.1% female, 84.8% White), 50.4% endorsed subjective cognitive functioning below the mean (MFACT-Br-CI=22.6±7.5). Nearly half reported significant distress due to cancer-related fatigue (49.6%) and cognitive change (48.9%). Patients’ mean severity of distress due to cognitive decline was significantly greater relative to all other cancer-related symptoms (ps<.001), except fatigue (p>.05). Age, gender, or time since diagnosis were not significant predictors (ps>.05) of distress due to cognitive decline. Most patients with distress due to cognitive change were interested in cognitive rehabilitation (63.6%) and mindfulness-based practices (61.6%), and only 40.4% were interested in medication. Interest in cognitive rehabilitation was not predicted by symptom distress, subjective cognitive functioning, age, gender, or time since diagnosis (ps>.05). Gender was the only significant predictor of interest in mindful movement (b=.18, p=.041), with greater interest among women (χ2(1)=4.65, p=.031). CONCLUSIONS Fatigue and cognitive decline were the most distressing cancer-related symptoms for neuro-oncology patients. These findings emphasize the need for integrated interventions, including cognitive rehabilitation and mindfulness, as well as multi-targeted and individualized treatments for fatigue and cognitive decline in neuro-oncology.

DISP-03. HEALTH DISPARITIES IN NEURO-ONCOLOGY

Abstract Significant disparities in diagnosis, research, and treatment exist in neuro-oncology. Patients who identify as racial or ethnic minorities, sexual or gender minorities, elderly, rural, or have low socioeconomic status are more likely to have adverse outcomes. Using PubMed and expert opinion, we summarized the existing literature on health disparities in neuro-oncology. We categorized disparities based on primary central nervous system tumors (CNS), secondary CNS tumors, pediatric neuro-oncology, clinical trial enrollment and diversity, and financial toxicity. For patients with primary CNS tumors, we found that marginalized groups faced delays in diagnosis, lower rates of resection, and lower rates of postoperative radiation. For secondary CNS tumors, marginalized groups had lower rates of indicated cancer screening, less access to genetic testing, less access to advanced imaging, and lower rates of stereotactic radiosurgery and targeted therapies. Pediatric neuro-oncology patients had differences in morbidity and mortality based on socioeconomic status and race and faced substantial delays in diagnosis. Financial toxicity, the side effects of the high financial cost of a cancer diagnosis, disproportionately affects marginalized populations. This may be further exacerbated by the use of long-term medications such as IDH inhibitors. There is also unequal representation of diverse populations in neuro-oncology clinical trials. Compared to other cancer subspecialties, there is less available data on disparities, however, the types of disparities such as delays in diagnosis and outcomes are similar. Notably, there are not many interventions focused on mitigating these disparities. There needs to be additional research on health disparities in neuro-oncology, including both descriptions of existing disparities, but also on methods and interventions to address these disparities.

EOLP-02. END-OF-LIFE CHALLENGES IN NEURO-ONCOLOGICAL PATIENT CARE: A YOUNGNOA SURVEY

Abstract BACKGROUND Malignant brain tumors inevitably relapse, almost always causing significant functional and neurological impairments. Thus, palliative care is crucial in managing individuals with malignant brain tumors. It is essential for neuro-oncologists to be well-prepared to openly communicate about and meet the palliative needs of these patients. With this survey, we sought to evaluate palliative care practices in Germany and their impact on the treatment of neuro-oncological patients. METHODS We conducted an anonymous, interdisciplinary survey targeting palliative care practices among neuro-oncologists in Germany, all members of the Neuro-oncology Working Group of the German Cancer Society. The questionnaire, designed in close coordination with board-certified palliative care specialists, was distributed to 450 physicians. It collected personal information and assessed respondents’ knowledge of and access to palliative care structures. The survey was conducted online from March 31 to April 30, 2023. RESULTS Ninety-two physicians completed the survey. Of these, 81 (88%) reported feeling comfortable with end-of-life conversations, while 11 (12%) did not. No significant differences were observed between the two subgroups regarding their level of medical education (p=0.7140), workplace (p=0.4966), sex (p=0.9999), medical specialty (p=0.5478), or region of practice (p=0.9999). However, those comfortable with end-of-life discussions had significantly more palliative care training either during specialty training (p=0.0475) or through active participation in palliative care courses (p=0.0254). Further detailed analysis is in progress. CONCLUSIONS The survey indicates that while the majority of participants are comfortable with end-of-life discussions, a clear correlation exists between their comfort level and the extent of palliative care training received. This highlights the critical need for enhanced and targeted palliative care education within neuro-oncology training programs to prepare physicians for the complex communication and care challenges in neuro-oncological palliation. Further analysis will continue to explore additional educational and systemic factors that could increase the quality of palliative care in neuro-oncology.

Cutaneous Toxicities of MEK Inhibitor Use in Children: AComparison of Binimetinib and Selumetinib.

Binimetinib and selumetinib are two mitogen-activated protein kinase kinase (MEK) inhibitors used to treat low-grade gliomas and plexiform neurofibromas. Cutaneous toxicities are commonly associated with MEK inhibitors; however, limited studies have examined cutaneous effects in a pediatric population or whether toxicities vary between MEK inhibitors. We conducted an IRB-approved, single-center, retrospective review of pediatric neuro-oncology patients on binimetinib or selumetinib who presented to NYU from April 2016 through July 2022. Forty-six children met inclusion criteria (23 females, 23 males) with a mean age of 11.7 years. Thirty-three were treated with binimetinib and 13 with selumetinib. Dermatologic adverse events were encountered in 97.8% of the cohort, and the most common were acneiform eruption (63.0%), paronychia (58.7%), and xerosis (54.3%). Children 12 years and older were more likely to have acneiform eruption (p < 0.001) and seborrheic dermatitis (p < 0.001), while children under 12 were more likely to have xerosis (p = 0.037). The incidence of cutaneous adverse events was significantly different between MEK inhibitors for folliculitis and hair pigment dilution (39.4% binimetinib, 0% selumetinib, p = 0.009). Significantly, more patients required MEK inhibitor dose reduction/hold on binimetinib (87.9%) than selumetinib (46.2%) (p = 0.006). Severity of cutaneous disease was not associated with tumor response. Our study confirms dermatologic adverse events are common in children on MEK inhibitors. Age appears to be associated with increased likelihood of certain cutaneous reactions. Overall, the selumetinib patients in our cohort presented with less severe adverse events and decreased risk of MEK inhibitor dose reduction/hold. Our results will aid clinicians in providing appropriate counseling, treatments, and improved preventive care.

DO NEURO ONCOLOGY PATIENTS FEEL SUffiCIENTLY SUPPORTED TO MANAGE THEIR SURGICAL WOUNDS AFTER SURGERY?

Abstract AIMS Establish if neuro oncology patients feel they are sufficiently well supported to manage their wounds post operatively. Is there any correlation to patient wound care management and developing wound infections. METHOD There was an anecdotal rise in wound infections in the neuro oncology department, which led to the team investigation a cause. This project was looking to see if patients felt they were sufficiently supported to manage their wounds post operatively. A survey was sent via email to 94 patient’s who had undergone neurosurgery under the neuro oncology team at a London teaching Hospital in December 2023, January 2024, and February 2024. RESULTS There was a response rate of 23.5%. Overall 96% of patients felt able to manage their wound post operatively. 76% of people wished to have the information on wound care at discharge from hospital. 68% advised that they would like to receive information about wound care via printed material and 76% would like verbal instruction with questions. Patients commented that ‘there was a conflict of information’, and ‘the information at discharge could have been better’. They would like information on’ how to clean it [the wound]. 3 patients had a suspect infection but did not have treatment, and 1 had a confirmed infection with treatment. CONCLUSION Neuro oncology patients are able to manage their wounds post operatively, but they feel that they would benefit from extra support via written material, and verbal instructions. Future projects may include developing an evidence based post operative wound care information leaflet and instructions for wound care. Although in this cohort there was only 1 confirmed infection, further investigation is needed to establish the cause for the apparent increase.

RISKS AND OUTCOMES OF STROKE IN PATIENTS WITH PRIMARY BRAIN AND MENINGEAL TUMOURS

Abstract AIMS People with primary CNS tumours are at increased risk of stroke. However, there is little guidance on stroke management. We investigated the types and timing of stroke in primary brain and meningeal tumours to inform their treatment. METHOD Patient data on stroke aetiology, timing, management and outcomes was collected from electronic medical records at King’s College Hospital between April 2012 to April 2022. A primary brain tumour was defined using the 2021 World Health Organisation Classification of Tumours of the Central Nervous System. RESULTS We identified 244 patients with a brain tumour and a stroke with a total of 317 strokes in the 10-year period (male:female = 48:52; median age, 62 years [IQR 51 – 74]). The most common brain tumours were meningiomas (43%) and glioblastomas (21%). 56% of strokes were ischaemic. Ischaemic strokes were most frequent within 30 days of brain tumour surgery (38%). Haemorrhages were more common in malignant tumours (p=4.7 x10 35% of haemorrhages were intratumoural. Strokes in malignant tumours: occurred closer to diagnosis (p=0.032); caused greater functional loss (mean Modified Rankin Scale change 2.00 vs 1.17, p 0.001); and had a higher mortality rate (HR 5.87, CI 3.41 - 10.11, p=1.8x10 Recurrent strokes occurred in 64 (26%) patients and were associated with tumour malignancy (p=0.016), radiotherapy (p=0.023) and chemotherapy (p=0.009). CONCLUSION Strokes in malignant brain tumours are more lethal, disabling and often recurrent in patients undergoing chemo and radiotherapy. Clinical trials are needed to improve outcomes of stroke in neuro-oncology patients.

AN ANALYSIS OF THE PATIENT REPORT OUTCOMES OF A JOINT CNS / AHP NEURO-ONCOLOGY CLINIC ON PATIENTS QUALITY OF LIFE

Abstract AIMS Velindre Cancer Centre established a successful model of collaborative working between CNS and AHP services for neuro-oncology patients to holistically support their complex needs throughout treatment. Building on this success, the clinic has introduced a recognised reliable and valid patient reported outcome measure (PROM) to be completed pre and post clinic intervention. This is in addition to the patient reported experience measure that is already established within the pathway. This PROM will enable an analysis of the clinics impact on patients quality of life. METHOD A quantitative methodology will be utilised to enable a objective evaluation of the impact of the clinic on patients quality of life. An EQ-5D-5L PROM is completed with patients prior to their involvement with the clinic enabling an overview of key aspects related to quality of life including mobility, self-care, participation in usual activities, pain and anxiety / depression. Following interventions within the clinic, patient are provided with a post treatment EQ-5D-5L to enable a comparison of these key indicators of quality of life. RESULTS The data will build on the resounding success of collaborative working between CNS and AHP’s in the neurooncology MDT clinic. An analysis of the pre and post data will demonstrate the impact of having access to this unique and integrated way of working, enabling patient access to specialist timely support throughout their treatment. CONCLUSION This innovative model of working is now established in the patient pathway and findings from patient experience measures have recognised that patients experience of the clinic is extremely highly valued. Findings from this additional dataset will further evidence the impact on patients quality of life. It will add to findings from a proposed gap analysis to evidence the benefits of developing an outreach service for this patient cohort.

Increased Distress in Neurooncological Patients, a Monocentric Longitudinal Study: When to Screen Which Patient?

Neurooncological patients are well-known to experience an increased psycho-oncological burden with a negative impact on distress, therapy adherence, quality of life, and finally survival. But still, psycho-oncological screening and support is rare, with ongoing discussion about specific screening time points and impact factors. Therefore, we analysed the psycho-oncologic treatment demand at specific disease-related time points throughout therapy. In this longitudinal, prospective, single-centre study, patients with malignant brain tumours were screened for increased distress (using the Distress Thermometer), anxiety, depression (Hospital Anxiety and Depression Scale questionnaire), and health-related quality of life interference (EORTC QLQ C30-BN20 questionnaire) at specific longitudinal time points during therapy. The results were correlated with sociodemographic and clinical data. From 2013 to 2017, 2500 prospective screening data points from 512 malignant brain tumour patients were analysed. DT was identified as a significant predictor for psycho-oncological treatment demand (p < 0.001). Particularly significant time points concerning psycho-oncological burden were primary diagnosis and tumour recurrence. Next to these known factors, here, patients < 65 years old and female patients (p = 0.018 and p = 0.017) reflected increased screening results, whereas partnership and professional activity (p = 0.043; p = 0.017) were identified as contributing factors to a significantly decreased treatment demand. The increased need for psycho-oncological support for neurooncological patients is underlined. Psycho-oncological support should particularly be offered at the time points of primary diagnosis and tumour recurrence. To support the positive effect of caregivers, they should be involved at an early stage.

Cranial stair-step incision for minimizing postoperative complications in neuro-oncologic surgery: A propensity score-matched analysis.

Craniotomies for tumor resection can at times result in wound complications which can be devastating in the treatment of neuro-oncological patients. A cranial stair-step technique was recently introduced as an approach to mitigate these complications, especially in this patient population who often exhibit additional risk factors including steroids, chemoradiation, and VEGF inhibitor treatments. This study evaluates our cranial stair-step approach by comparing its postoperative complications using propensity score matching with those of a standard craniotomy wound closure. A retrospective chart review was conducted on patients with intracranial neoplasms undergoing primary craniotomy at a single institution. Patients with prior craniotomies and less than three months of follow-up were excluded. Analyses were performed using R Studio. 383 patients were included in the study, 139 of whom underwent the stair-step technique while the rest underwent traditional craniotomy closures. The stair-step cohort was older, had higher ASA classes, and had a higher prevalence of coronary artery disease. The stair-step patients were administered fewer steroids before (40.29% vs. 56.56%, p < 0.01) and after surgery (87.05% vs. 94.26%, p = 0.02), fewer immunotherapy (12.95% vs. 20.90%, p = 0.05), but they received more radiation preoperatively (15.11% vs. 8.61%, p = 0.05). They also underwent fewer operations for recurrences and residuals (0.72% vs. 10.66%, p = 0.01). On propensity score matching, we found 111 matched pairs with no differences except follow-up duration (p < 0.01). The stair-step group had fewer soft tissue infections (0% vs. 3.60%, p = 0.04), fewer total wound complications (0% vs. 4.50%, p = 0.02), was operated on less for these complications (0% vs. 3.60%, p = 0.04), and had a shorter length of stay (6 vs. 9days, p < 0.01). Notably, the average time to wound complication in our cohort was 44days, well within our exclusion criteria and follow-up duration. The cranial stair-step technique is safe and effective in reducing rates of wound complications and reoperation for neuro-oncologic patients requiring craniotomy.

Critical Issues for Patients and Caregivers in Neuro-Oncology during the COVID-19 Pandemic: What We Have Learnt from an Observational Study.

The COVID-19 pandemic affected neuro-oncological patients and their caregivers regarding tumor care and emotional functioning, including Quality of Life (QoL). This study aimed to understand how COVID-19 affected their psychological state and the relations between patients and health personnel in neuro-oncology. A cross-sectional study was conducted on neuro-oncological patients and their caregivers. A total of 162 patients and 66 caregivers completed the questionnaire. Altogether, 37.5% of patients perceived a greater risk of contracting COVID-19 compared to the general population. On a 0-10 scale, the patients' tumor-related anxiety score was 5.8, and their COVID-19-related score was 4.6. The caregivers reported 7.7 and 5.5, respectively. QoL was described as at least good in 75% of both patients and caregivers; the caregivers' care burden increased in 22.7% of cases during the pandemic, with no correlation with QoL. Future perception often changed, both in patients and caregivers. In 18% of cases, the cancer treatment schedule was changed, either by patient decision or by medical decision. However, 93.5% of patients were satisfied with their overall care. A considerable proportion of patients and caregivers still perceived the tumor disease as more burdensome than the pandemic, and their future as more uncertain. Such data suggest the need to build a productive alliance between patients and health professionals.

Translation and validation of the Neurological Assessment in Neuro-Oncology scale to Brazilian Portuguese.

The Neurological Assessment for Neuro-Oncology (NANO) scale was elaborated to assess neurologic function in integration with radiological criteria to evaluate neuro-oncological patients in clinical setting and enable the standardization of neurological assessment in clinical trials. The objective of this study is the translation to Brazilian Portuguese and transcultural adaptation of NANO scale in patients with the diagnosis of glioblastoma, brain metastasis and low-grade glioma. Patients with diagnosis of glioblastoma, brain metastasis, and low-grade glioma were prospectively evaluated between July 2019 and July 2021. The process of translating and cross-culturally adapting the NANO scale included: translation from English to Portuguese, synthesis and initial revision by an expert committee, back-translation from Portuguese to English, a second revision by the expert committee, and the application of the NANO scale. Regarding the reliability of the NANO scale, Cronbach's alpha was employed to measure the internal consistency of all scale items and assess the impact of item deletion. Additionally, Spearman's correlation test was used to evaluate the convergent validity between the NANO scale and Karnofsky Performance Scale (KPS). One hundred and seventy-four patients were evaluated. A statistically significant inverse relation (p < 0.001) between KPS and NANO scale was founded. The Cronbach's alpha values founded for NANO scale were 0.803 for glioblastoma, 0.643 for brain metastasis, and 0.482 for low grade glioma. The NANO scale Brazilian Portuguese version proves to be reproducible and valid to evaluate neuro-oncological patients with glioblastoma and brain metastasis, presenting a strong correlation with KPS scale. Further studies are warranted to assess the validity and reliability of the scale in patients diagnosed with low-grade glioma.

OTHR-02. ONE-YEAR FOLLOW-UP OF THE NEW ERN PAEDCAN CNS TUMOR BOARD: LESSONS LEARNT AND FUTURE PROSPECTS

Abstract BACKGROUND European Reference Networks (ERN) are collaborative networks connecting healthcare professionals across Europe. A virtual tumor board for pediatric patients with central nervous system (CNS) tumors was established within the ERN for pediatric oncology (ERN PaedCan) in September 2022. We report the feasibility, the implementation of recommendations and satisfaction of the participants. METHODS A web-based questionnaire was distributed to physicians presenting cases between November 2022 and November 2023. Questions addressed the implementation of recommendations, satisfaction and basic information about the local institution. Basic data of the presented cases were taken from anonymized tumor board protocols. RESULTS In the first year, 19 patients from 11 institutions located in nine European countries were discussed in 21 tumor boards. Median age at diagnosis was 10 (1-17) years. Demonstration of MRI findings by the German national reference center for neuroradiology was conducted in 19/21 conferences. 18/21 questionnaires (86%) were answered by physicians from eight countries. Main reason to request the discussion were questions about therapy (78%, n=14/18). Inquiring institutions treated a median of 10 (5-150) neuro-oncological pediatric patients per year. All hospitals conducted own institutional tumor boards. National central review was available in 3/8 countries (38%). Recommendations were followed, at least partly, in all cases except for one patient experiencing unexpected clinical deterioration. Recommendations were deemed helpful in 89%. All participants would recommend the tumor board to colleagues. Technical issues regarding data provision were reported as the main obstacle in 50 %. CONCLUSIONS A European virtual tumor board for pediatric patients with CNS tumors is feasible and perceived as useful by the participating institutions. Recommendations were followed frequently. Optimization of privacy-compliant data exchange is crucial for continuance of the format. This project has been supported by ERN PaedCan, which is funded by the European Union within the EU4Health Program 2021-2027. Funded by EU-grant 101085543.

OTHR-05. ROLES OF GEMCITABINE-OXALIPLATIN (GEMOX) ADD-ON THERAPY IN INFANT-TYPE BRAIN TUMORS: A SINGLE CENTER EXPERIENCE

Abstract BACKGROUND Combined gemcitabine and oxaliplatin (GemOx) was evaluated in recurrent pediatric solid tumors, showing safety but limited activity. In neuro-oncological infant patients, chemotherapy intensified to high doses (HDC) represents the cornerstone, avoiding radiotherapy toxicities. We describe the roles of GemOx towards autologous transplantation in infant-type brain tumors. METHODS From May 2017 to January 2024, at the Meyer Children’s Hospital IRCCS in Florence, six children (median age 19 months, sex equally distributed, three high-grade gliomas, a metastatic medulloblastoma MM, a pineoblastoma, a choroid plexus carcinoma CPC) completed GemOx after induction chemotherapy delivered according to Italian program for malignant brain tumors under 3 years. GemOx was administered to achieve clinical and neuroradiological permissiveness to HDC and to raise the possibility of second look neurosurgery. RESULTS Gemcitabine 1000 mg/m2 and Oxaliplatin 100 mg/m2 were given every 14-28 days for 1-6 cycles. At re-assessment, maximum every four cycles, disease control was optimal (five stable diseases and one partial response according to RECIST criteria). After GemOx, one patient was also subjected to further neurosurgery. The treatment was overall well tolerated, except for Common Terminology Criteria for Adverse Events (CTCAE) grade 4 platelet toxicity in two patients (one of whom also developed hydrocephalus CTCAE 3 and hyponatremia CTCAE 4 during treatment). All patients were safely exposed to HDC (1-2 courses). MM and CPC patients progressed respectively 4 ad 19 months after the end of GemOx. The latter underwent second look neurosurgery, and a radiotherapy course was delivered to both, considering the achievement of permissive age. To date all patients are alive. CONCLUSIONS In brain infant-type malignant tumors strategies are limited due to the extremely vulnerable age. GemOx treatment should be considered a reasonable and safe option waiting for intensified treatment, especially in radiotherapy delaying programs, and it should result incisive in the therapeutic or palliative choice.

NURS-10. DEVELOPMENT OF A NATIONAL PAEDIATRIC NEURO-ONCOLOGY NURSES GROUP (UNITED KINGDOM)

Abstract BACKGROUND The purpose of developing this group is to provide neuro-oncology patients with a high standard of care from diagnosis, treatment and beyond that is research based and reflects individual needs. This forum allows nurses working within paediatric neuro-oncology to share knowledge, experience, collaborate on projects, benchmarking and research opportunities. This will allow paediatric neuro-oncology nurses to increase their expertise and to foster relationships and collaborate with the wider neuro-oncology field and multi-disciplinary team. METHODS Develop an affiliation with a national association or organization Develop links to ensure all neuro-oncology nurses within CCLG centres are aware of the group, have the opportunity to join, fostering collaboration and support. Develop awareness of the neuro-oncology nursing speciality Develop a mission statement, terms of reference, and rolling agenda Literature reviews to ensure group has similar operation in line with other national nurses’ groups. Developing accountability. RESULTS Developed database of national neuro oncology nurses with all CCLG UK and Ireland centres represented. Set frequency of meetings and agendas. Ensure it operates to the same standard as other nurses’ groups. Organised working groups for projects. Agreed role of chair. CONCLUSION These activities have continued the development of the group since it’s conception in 2015 providing more structure, continued support to its members and wider recognition of its work. A robust mission statement, terms of reference, organisation and structure will ensure continued provision of education and support to neuro-oncology nurses, recognition of the group to the wider neuro-oncology community and improve overall patient experience.

NURS-14. DEVELOPMENT OF A CLINICAL PRACTICE INTERVENTION TO SUPPORT NURSES CARING FOR PATIENTS WITH DIABETES INSIPIDUS (DI) DURING CHEMOTHERAPY HYDRATION

Abstract BACKGROUND Pediatric neuro-oncology patients with germ cell tumors (GCT) and diabetes insipidus (DI) often require management with vasopressin (DDAVP). Fluid and sodium balance, ordinarily managed successfully with DDAVP, can be disrupted during chemotherapy and associated hydration. Patients with an intact thirst mechanism may be able to self-regulate fluid and salt balance under the right conditions, whereas patients without an intact thirst may experience sodium fluctuations if intravenous hydration exceeds the amount they drink independently. Patients may be unable to maintain adequate hydration and sodium levels due to nausea and/or sedating antiemetics. These factors create a unique clinical challenge for nurses. Nurses sought guidance in understanding DI and its impact on hydration during chemotherapy. METHODS Two nursing education sessions were held and focused on DI management. Nurses were surveyed pre and post education. The goals of the intervention were that the oncology nurse will be to describe the pathophysiology of diabetes insipidus, the role of desmopressin, the ability to differentiate between management of patients with and without an intact thirst mechanism, and the special care of a DI patient receiving chemotherapy. RESULTS Nurses reported an increased awareness post education of the need to closely assess patients and manage their DI in collaboration with clinicians. Routine chemotherapy management does not apply to this population, because drastic fluctuations in sodium and water balance put them at risk of other complications. Nurses identified the need to closely manage hydration, DDAVP, recording strict intake/output, monitoring sodium levels, assessing for nausea/vomiting and the degree of sedation from antiemetics. CONCLUSION Outcomes from this educational intervention were that nurses had an increased understanding of DI management in patients with GCT receiving chemotherapy. Future goals would be to implement a standard approach to hydration, DDAVP administration, and monitoring sodium levels in patients with GCT and DI.

NURS-09. FERTILITY PRESERVATION AND PALLIATIVE CARE: RECOGNIZING THE NURSING ROLE IN THE PROMPT IMPLEMENTATION OF SUPPORTIVE CARE INTERVENTIONS IN THE PEDIATRIC CENTRAL NERVOUS SYSTEM TUMOR PATIENT POPULATION

Abstract BACKGROUND Given the complexity of pediatric central nervous system (CNS) tumors, an interdisciplinary approach is necessary to incorporate supportive care interventions that complement oncologic treatment plans. However, early implementation of both palliative care and fertility preservation services presents challenges within the pediatric neuro-oncology population. METHODS An extensive literature review was conducted for articles published between 2013-2023 using PubMed, Google Scholar, and CINAHL databases. The articles focused on nurses’ roles in pediatric oncology, palliative care, fertility preservation, and barriers to supportive care. Furthermore, the review incorporated collective knowledge sharing among pediatric neuro-oncology nursing specialists. This joint initiative applied evidence-based practices to showcase the successful implementation of palliative care and fertility preservation services, broadening this project’s scope. RESULTS One prevalent theme that emerged highlighted the delay in supportive care referrals attributed to perceived obstacles by healthcare team members. The misconception that palliative care is solely for end-of-life situations or the assumption that families are not ready to acknowledge an incurable diagnosis causes delays in palliative care referrals. Fertility preservation in pediatric oncology encounters obstacles, including the urgency to commence treatment, determining optimal candidate criteria, and navigating discussions with younger patients. Nurses are uniquely positioned in their role to bridge gaps between oncologic treatment interventions and the incorporation of supportive care measures. Recognizing the supportive care needs of patients, nurses can educate families, advocate for early referrals, and coordinate integrative care. Advanced Practice Nurses (APNs) can offer clinical consultation, and order appropriate screening, testing, medications, and referrals. CONCLUSION Disseminating nursing education across pediatric oncology practices and institutions is essential for identifying perceived barriers and reforming the early supportive care intervention process. This collaborative and proactive approach is designed to optimize the overall care experience, with the goal of enhancing the delivery of supportive care for pediatric neuro-oncology patients.