Neuro-oncology practice最新文献

{"title":"Health-related quality of life outcomes of surgery for diffuse glioma: A systematic review and pooled analysis.","authors":"Yash Akkara, Ryan Afreen, Raymund L Yong","doi":"10.1093/nop/npaf111","DOIUrl":"10.1093/nop/npaf111","url":null,"abstract":"<p><strong>Background: </strong>Although progress has been made in understanding the effects of adjuvant therapy on health-related quality of life (HR-QoL) in diffuse glioma patients, less is known about the impact of surgical resection. To address this, we conducted a systematic review and pooled quantitative analysis.</p><p><strong>Methods: </strong>PubMed, MEDLINE, and Embase were searched for studies measuring HR-QoL before and after surgery for WHO grade 2-4 adult-type diffuse gliomas. Inclusion was limited to prospective cohort studies and trials on adults with ≥1 month of postoperative follow-up. Metric outcomes were assessed with pooled odds, competing risk analysis, and meta-regression using a random effects model. Bias was assessed using the Newcastle-Ottawa Scale and Cochrane Risk of Bias 2.0 tool.</p><p><strong>Results: </strong>Twelve studies comprising 1000 patients were included. The pooled odds of an unfavorable versus favorable HR-QoL change compared to baseline was not significantly different from 1 within 3 months of surgery (0.843, 95% CI, 0.339-2.100), but significantly less than 1 at final follow-up (0.481, 95% CI, 0.260-0.888). The cumulative incidence of favorable HR-QoL change was significantly higher than that of unfavorable change, with the incidence curves separating after 3 months (χ²(1) = 95.0, <i>P</i> < .001). This was attributable to EQ-5D and EORTC QLQ-C30 but not SF-36. Studies with younger patients, more high-grade tumors, and lower gross total resection rates showed worse outcomes.</p><p><strong>Conclusion: </strong>Surgical resection can maintain or improve HR-QoL, but patients at risk of deterioration should be identified early. Future studies must carefully select and interpret HR-QoL instruments, as preference-based and non-preference-based tools may lack comparability.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 1","pages":"60-70"},"PeriodicalIF":2.5,"publicationDate":"2025-10-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12965647/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147378059","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Outcomes of inpatient chemoradiotherapy for patients with newly diagnosed glioblastoma and significant functional impairment.","authors":"Neil Sielski, Anne S Reiner, William E Rosa, Brandon S Imber, Luke R G Pike, Louis P Voigt, Lauren R Schaff, Andrew L Lin, Christian Grommes, Igor T Gavrilovic, Jacqueline Stone, Alan C Carver, Marc Rosenblum, Viviane Tabar, Thomas Kaley, Ingo K Mellinghoff, Elena Pentsova","doi":"10.1093/nop/npaf109","DOIUrl":"10.1093/nop/npaf109","url":null,"abstract":"<p><strong>Background: </strong>Clinical outcomes in patients with glioblastoma and low Karnofsky Performance Scale (KPS) in the inpatient setting are rarely described. Limited survival data and high symptom burden complicate decision-making. This study describes patient-centered outcomes in functionally debilitated patients with newly diagnosed glioblastoma following cancer-directed treatment.</p><p><strong>Methods: </strong>We retrospectively reviewed charts of patients with newly diagnosed glioblastoma who received radiotherapy (RT) while hospitalized. Patient, tumor, and treatment characteristics were included in univariable Cox regression and logistic models to assess associations with overall survival (OS) and discharge home. Multivariable models included factors significant on univariable analysis. OS was estimated by the Kaplan-Meier method.</p><p><strong>Results: </strong>Of 52 patients (median age: 68 years, range: 21-85), median KPS was 50 (range: 30-60). All underwent RT and 50 (96%) received concurrent temozolomide; 12 (23%) received bevacizumab, and 46 (88%) completed planned RT. Median length of stay (LOS) was 29 days (range: 20-65). Only 40% of patients were able to participate in decision-making. Specialty palliative care consultation was provided to 16 (31%). Median OS was 5.82 months. In multivariable analysis, lower KPS remained the sole factor significantly associated with increased risk of death (<i>P</i> = .002) and decreased odd of discharge home (<i>P</i> = .02).</p><p><strong>Conclusion: </strong>Inpatient treatment for functionally disabled patients with glioblastoma was associated with prolonged LOS and poor outcomes. These findings highlight opportunities for early incorporation of specialty palliative care to multimodal cancer-directed therapies to optimize symptom management, elicit patient values and preferences, and facilitate goal-concordant decision-making. Prospective studies are necessary to identify predictors of functional recovery and treatment options.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 2","pages":"312-321"},"PeriodicalIF":2.5,"publicationDate":"2025-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13153683/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147869096","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Real-world management and long-term outcomes in adolescent, young adult, and adult medulloblastoma: Experience from a monocentric series with multimodal and targeted approaches.","authors":"Alberto Bosio, Marta Maccari, Marta Padovan, Mario Caccese, Maital Bolshinsky, Antonella Galiano, Francesco Cavallin, Luisa Bellu, Francesco Pasqualetti, Alessandro Parisi, Giovanni Librizzi, Giovanna Pintacuda, Alessandro Salvalaggio, Marco Zoccarato, Tamara Ius, Francesco Volpin, Luca Denaro, Sara Lonardi, Giuseppe Lombardi","doi":"10.1093/nop/npaf110","DOIUrl":"10.1093/nop/npaf110","url":null,"abstract":"<p><strong>Abstract: </strong>Background Medulloblastoma (MB) is an exceedingly rare malignancy in adolescents and young adults (AYA) and adults. This study aims to describe clinical characteristics, treatments, including the use of targeted therapy, outcomes, and long-term sequelae in a single-center cohort of AYA/adult MB patients.</p><p><strong>Methods: </strong>We retrospectively analyzed MB patients aged <math><mo>≥</mo></math> 16 years treated at Veneto Institute of Oncology, Padua, Italy, between 2011 and 2025. Clinical, molecular, and treatment data were collected. Treatment response was assessed using RAPNO criteria, and treatment-related toxicity according to CTCAE v5.0. Survival outcomes were estimated using the Kaplan-Meier method.</p><p><strong>Results: </strong>We included 29 patients. At diagnosis, 86% were symptomatic, 55% had an ECOG performance status (PS) of 0, and desmoplastic/nodular was the most frequent histology (48%). Molecular subgrouping was available in 45%, with SHH activation as the most common subgroup (31%, 9/29 patients). All patients underwent craniospinal radiotherapy; adjuvant chemotherapy regimens included cisplatin-etoposide <math><mo>±</mo></math> cyclophosphamide (62%), cisplatin-lomustine <math><mo>±</mo></math> vincristine (21%), and intensive pediatric regimens (10%), while 2 patients (7%) did not receive chemotherapy due to comorbidities. First-line complete response was achieved in 65%. Overall, 38% experienced progression, and 24% died. Three patients received vismodegib at recurrence. Three-year PFS and OS rates were 78% and 92%. Stratified analyses indicated worse outcomes in patients with high-risk classification, subtotal resection, and lower baseline ECOG PS. Grade 3-4 toxicity occurred in 30%. Long-term complications included neurocognitive impairment (21%) and radiotherapy-induced secondary malignancies (10%).</p><p><strong>Conclusions: </strong>Long-term survivorship is often achievable in AYA/adult MB, though late toxicities remain a concern. Molecular profiling supports risk stratification and therapy personalization. Long-term toxicities highlight the need for de-intensified strategies.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 2","pages":"385-393"},"PeriodicalIF":2.5,"publicationDate":"2025-10-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13153702/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147869113","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Evaluating the current neuro-oncology capacity in Sub-Saharan Africa: A questionnaire-based survey.","authors":"Francis Zerd, Lateef A Odukoya, Beverly Cheserem, Kwadwo Darko, Nathalie C Ghomsi, Gloria S Kabare, David O Kamson, Jeanette E Eckel-Passow, Robert B Jenkins, Paul Decker, Henry Llewellyn, Gaspar J Kitange, Andrea O Akinjo, Kabir B Badmos, W Elorm Yevudza, Olufemi Bankole, Olufemi E Idowu, Abiola Abdulrahman Ayanlaja, Claire Karekezi, Elias Edrick, Chukwuyem Ekhator, Victoria M Katasi, Daniel H Lachance, Jason Huse, Margreth Magambo, Eyerusalem Banti, Michael Magoha, Advera Ngaiza, Arsene D Nyalundja, Dominique Higgins, Minda Okemwa, Lawrence Osei-Tutu, Bernard Petershie, Frank J Minja, Charles C Anunobi, Arnold B Etame, Liadi Tiamiyu, Gbetoho Fortuné Gankpe, Ugumba Mussa Kwikima, Kashaigili Heronima, Kristin Schroeder, Thierry Muanza, Desmond A Brown, Alan Davidson, Ekokobe Fonkem, Teddy Totimeh, James Balogun","doi":"10.1093/nop/npaf107","DOIUrl":"10.1093/nop/npaf107","url":null,"abstract":"<p><strong>Background: </strong>Central nervous system (CNS) tumors are a significant cause of morbidity and mortality in Sub-Saharan Africa (SSA). This project aimed to assess and map out the current neuro-oncology capacity in SSA, brain tumor registries, and biobanks.</p><p><strong>Methods: </strong>This cross-sectional study utilized an online survey to gather data from healthcare professionals involved in CNS tumor care across SSA through the Society for Neuro-Oncology SSA (SNOSSA). The survey captured information on the availability of neuro-oncology practitioners, neuropathology, molecular diagnostics, cancer registries, and biobanking.</p><p><strong>Results: </strong>A total of 145 respondents representing 70 healthcare institutions across 22 countries participated. Of the 70 institutions, specialties included neurosurgery (89%, 62/70), anatomic pathology (74%, 52/70), and medical oncology (71%, 50/70). For radiologic evaluation, 64% (45/70) of responding institutions reported having both CT and MRI. Access to molecular testing through immunohistochemistry or next-generation sequencing was available in 46% (32/70) of responding institutions. Multidisciplinary tumor boards were available for CNS cases in 86% (60/70) of responding institutions. Brain tumor-specific registries were available in 29% (20/70) of responding institutions, and 10% (7/70) maintained brain tumor biorepositories.</p><p><strong>Conclusion: </strong>This study demonstrates that SSA has substantial potential in neuro-oncology care practice capacity and facilities. The most significant gaps were in neuropathology and molecular testing, which makes widespread implementation of the WHO 2021 diagnosis challenging. Understanding the prevalence of CNS tumor subtypes in SSA is difficult due to the low number of brain tumor registries and biobanks.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 3","pages":"537-548"},"PeriodicalIF":2.5,"publicationDate":"2025-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13161895/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147931871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"When tumors speak: Understanding EEG periodic discharges in primary brain tumors and their clinical relevance.","authors":"Stefano Consoli, Fedele Dono, Giacomo Evangelista, Sara Cipollone, Stefano L Sensi","doi":"10.1093/nop/npaf106","DOIUrl":"10.1093/nop/npaf106","url":null,"abstract":"<p><strong>Abstract: </strong>Background Periodic discharges (PDs) are electroencephalogram (EEG) patterns commonly associated with focal cerebral lesions, particularly brain tumors (BTs). The clinical interpretation of PDs and their pathophysiological origins are controversial. This retrospective study describes the prevalence and characteristics of PDs in patients with BT, focusing on their association with BT-related epilepsy (BTRE) and status epilepticus (SE) diagnosis.</p><p><strong>Methods: </strong>Adult patients with BT who underwent a video-EEG recording were retrospectively selected from the Neurology Institute of \"G. d'Annunzio\" University of Chieti-Pescara from January 2016 to January 2024. Demographics, clinical features, tumor characteristics, and radiological findings were collected. Video-EEG data were reviewed to identify PDs.</p><p><strong>Results: </strong>One hundred and forty patients with BT (mean age: 60.6 ± 17.6 years; 61 females) were enrolled. Fifteen patients (10.7%) exhibited PDs on video-EEG (PD+ group). In the PD+ group, lateralized PDs (LPDs) were most observed (93.3%). Periodic discharges were concordant with the side of the tumor lesion in 73.3% of cases. Compared to the PD- group, patients in the PD+ group more frequently showed a parietal (<i>P</i> = .0019) and occipital BT localization (<i>P</i> < .0001), a high-grade tumor histology (<i>P</i> = .048) and a previous BTRE diagnosis (<i>P</i> = .014). SE was observed in 4 patients (26.7%), in association with a significantly higher PDs frequency (SE patients: 1.6 Hz, non-SE patients: 0.8 Hz; <i>P</i> = .003).</p><p><strong>Conclusions: </strong>PDs are more commonly observed in patients with high-grade primary BT, particularly those with parietal or occipital localization. They are predominantly reported in individuals with a prior diagnosis of BTRE and may indicate SE, especially when their frequency exceeds 1.6 Hz.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 2","pages":"292-300"},"PeriodicalIF":2.5,"publicationDate":"2025-10-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13153691/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147869084","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"European neuro-oncology quality assessment (ENOQUA): A European organization for the research and treatment of cancer (EORTC) brain tumor group research project.","authors":"Evangelia Razis, Thierry Gorlia, Matthias Preusser, Jean-François Daisne, Ludo Vanopdenbosch, Patrick Roth, Maximilian J Mair, Markus Wolfram Gross, Vittoria Espeli, Tomas Kazda, Jordi Bruna, Andrea Di Cristofori, Giuseppe Lombardi, Egils Valeinis, Dieta Brandsma, Annika Malmstrom, Petter Brandal, Ana Azevedo, Naureen Keric, Philipp Lohmann, Anastasia Vernadou, Brigitta Gertrud Baumert, Nicolaus Andratschke, Michael Weller, Filip de Vos, Peter Hau","doi":"10.1093/nop/npaf103","DOIUrl":"10.1093/nop/npaf103","url":null,"abstract":"<p><strong>Background: </strong>The care of patients with brain tumors is a complex task that requires quality standards and quality assurance indicators. In the present study, several quality indicators were evaluated in routine clinical care.</p><p><strong>Methods: </strong>The EORTC Brain Tumor Group (BTG) developed quality indicators from published guidelines and tested them in 19 BTG sites across Europe. Each site extracted data from the files of 20 randomly selected glioblastoma patients diagnosed in 2018. Associations between quality indicators, site characteristics and median overall survival (mOS) were examined.</p><p><strong>Results: </strong>A total of 364 patient files were evaluated at 19 sites. Excellent compliance was observed in the documentation of neuropathology report with isocitrate dehydrogenase (IDH) status (92.0%), O⁶ <i>-</i>methylguanine DNA methyltransferase promoter methylation (MGMT) status (78.0%), multidisciplinary case discussion (95.3 %), extent of resection (87.1%), and radiotherapy details (96.9%) as well as consent to chemotherapy (75.5%). Performance was not as good for early postoperative MRI (67.2%), psycho-oncological care (40.5%), avoiding antineoplastic therapy in the last weeks of life (63.1%) and early referral to palliative services (23.5%). Timely start of radiotherapy (<i>P</i> = .0153), the presence of a radiotherapy report in the medical record (<i>P</i> = .0077), and patient education on oral chemotherapy (<i>P</i> = .0002) were positively associated with mOS, while early referral to palliative care was associated with shorter mOS (<i>P</i> < .0001).</p><p><strong>Conclusions: </strong>The quality indicators tested in this research project performed with some variability between sites. Significant associations between individual quality indicators and mOS were observed. The proposed quality indicators should be validated prospectively.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 3","pages":"518-527"},"PeriodicalIF":2.5,"publicationDate":"2025-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13161901/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147931963","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and validation of the Neuro-Oncology Grief Index.","authors":"Rachael D Nolan, Abigail Beausir, Jeffrey S Hallam, Barbara O'Brien, Debraj Mukherjee, Katherine B Peters, Shlomit Yust-Katz","doi":"10.1093/nop/npaf108","DOIUrl":"10.1093/nop/npaf108","url":null,"abstract":"<p><strong>Background: </strong>Grief among neuro-oncology healthcare providers (NOPs) affects emotional resilience, professional performance, and patient care. This study adapted and validated the 30-item Neuro-Oncology Grief Index (NOGI) to assess grief experiences and coping strategies in NOPs after patient loss.</p><p><strong>Methods: </strong>A cross-sectional design was used to adapt the NOGI through item generation, expert review, and field testing. Psychometric properties were evaluated via exploratory factor analysis, internal consistency using Cronbach's alpha, and stepwise regression was performed using variables that were significantly associated with provider grief to determine their predictive value and the amount of variance.</p><p><strong>Results: </strong>The sample comprised 80 NOPs (68% female, 75% white, 62% with >5 years' experience). An exploratory factor analysis identified a single factor for the grief scale. Internal consistency was acceptable with Cronbach's alpha = .92. High grief was linked to frequent patient deaths, burnout, and compassion fatigue. Adverse coping behaviors, like staying overly busy or isolating, were common; 58% of NOPs avoided emotional support due to workplace norms. Regression analysis identified past-year risk factors, provider protective factors, and adverse behavioral risks as significant predictors of grief.</p><p><strong>Conclusions: </strong>The NOGI is a reliable, valid tool for assessing NOP grief, highlighting emotional grief, burnout, compassion fatigue, and coping strategies. Interventions addressing emotional support, burnout, and workplace norms are needed to enhance provider well-being and patient care. Future research should further validate the NOGI and address compassion fatigue and emotional support access.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 2","pages":"354-362"},"PeriodicalIF":2.5,"publicationDate":"2025-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13153713/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147869035","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advancing the role of clinical outcome assessments in neuro-oncology trials.","authors":"Josien C C Scheepens, Johan A F Koekkoek","doi":"10.1093/nop/npaf095","DOIUrl":"10.1093/nop/npaf095","url":null,"abstract":"","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 6","pages":"931-932"},"PeriodicalIF":2.5,"publicationDate":"2025-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12741833/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145850512","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"From discovery to delivery: the spectrum of decisional supports for people with brain tumors.","authors":"Caroline Crooms, Heather E Leeper","doi":"10.1093/nop/npaf096","DOIUrl":"10.1093/nop/npaf096","url":null,"abstract":"","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 6","pages":"929-930"},"PeriodicalIF":2.5,"publicationDate":"2025-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12741821/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145850519","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding the unmet needs of patients with brain metastases referred for stereotactic radiotherapy and their caregivers: A prospective cohort study.","authors":"Fia Cialdella, Eva E van Grinsven, Steven H J Nagtegaal, Arthur T J van der Boog, Celeste C Hinkert, Marion G Jentink, Ernst J Smid, An Claes, Catharina E Kleynen, Tom J Snijders, Filip Y F de Vos, Marielle E P Philippens, Martine J E van Zandvoort, Szabolcs David, Joost J C Verhoeff","doi":"10.1093/nop/npaf105","DOIUrl":"10.1093/nop/npaf105","url":null,"abstract":"<p><strong>Abstract: </strong>BackgroundBrain metastases (BMs) affect >30% of patients with cancer. Beyond survival, quality of life (QoL), and disease progression are critical concerns for both patients and their caregivers. We present the design of COIMBRA (Cohort for patient-reported Outcomes, Imaging, and trial inclusion in Metastatic BRAin disease), clinical characteristics, and pre-radiotherapy QoL data for patients and caregivers.</p><p><strong>Methods: </strong>COIMBRA is an observational, prospective, single-center cohort at UMC Utrecht, the Netherlands, focusing on BMs patients planned for (fractionated) stereotactic radiosurgery (SRS) and their caregivers. We collected clinical characteristics, imaging, and QoL (patient and caregiver) data via patient-reported outcome (PRO) questionnaires. PROs include the EORTC QLQ-C30, BN20, EQ-5D-3L (including VAS), CFQ, HADS, MFI, and CSI. PROs were compared with reference values from the literature for healthy, cancer, and brain tumor populations.</p><p><strong>Results: </strong>From April 2019 to April 2023, 377 patients (50.4% male, median age 66 years) who received stereotactic radiosurgery, were included. Two hundred and seventy-six patients and 115 caregivers consented to PROs. Patients reported lower QoL compared to healthy individuals and primary brain tumor patients, with worse role- and cognitive functioning compared to patients with cancer. Pre-radiotherapy, 1/3 of the caregivers felt overwhelmed. Almost 40% of them report signs of anxiety, which is less than caregivers of cancer or primary brain tumor patients.</p><p><strong>Conclusions: </strong>These data from a large cohort of patients with BMs and their caregivers underscore the unique clinical profile of this vulnerable population. These findings highlight the urgent need for targeted support systems to address unmet needs of both patients and caregivers.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"13 2","pages":"262-275"},"PeriodicalIF":2.5,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13153698/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147869111","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}