Neuro-oncology practice最新文献

{"title":"Out-of-pocket costs for patients diagnosed with high-grade glioma and their carers.","authors":"Jade C Newton, Georgia K B Halkett, Cameron Wright, Moira O 'Connor, Anna K Nowak, Rachael Moorin","doi":"10.1093/nop/npae107","DOIUrl":"10.1093/nop/npae107","url":null,"abstract":"<p><strong>Background: </strong>This study aimed to describe the out-of-pocket costs incurred by patients diagnosed with high-grade glioma (HGG) and their carers in the standard care arm of the Care-IS trial in the 6 to 8 months following their diagnosis.</p><p><strong>Methods: </strong>Carers completed monthly cost surveys detailing the out-of-pocket costs incurred by patients and carers over a 6-month period. Seventy carers reported out-of-pocket costs at baseline (within 2 months following patient diagnosis), and a maximum of 50% of participants reported costs in any subsequent month. Costs were adjusted to 2023 AUD and reported as medians with an interquartile range. Demographic factors were assessed to determine if any were significantly associated with being in the first or fourth quartile of total out-of-pocket costs at baseline.</p><p><strong>Results: </strong>Median monthly costs for patient-carer dyads were highest at baseline ($535[IQR:$170-$930]), and 2 months post-recruitment ($314 [IQR:$150-$772]). The largest contributors to patient-carer costs were patient health service use and patient medications. Patient and carer health service use and medication costs varied over time. The median health service use and medication out-of-pocket costs for patients and carers were mostly below $100 per month; however, there was a large variance in the upper 75th percentile for these cost categories. No factors were significantly associated with higher baseline out-of-pocket costs.</p><p><strong>Conclusions: </strong>A HGG diagnosis has a significant and sustained financial impact on people who are diagnosed and their carers. Patients experience significant additional costs relating to their diagnosis and travel to receive care, and their carers also continue to experience sustained costs whilst managing the additional tasks associated with informal caregiving.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 2","pages":"231-245"},"PeriodicalIF":2.4,"publicationDate":"2024-10-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11913655/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664054","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":"Seizure outcomes in patients with brain metastases and epilepsy: a systematic review on the efficacy of antitumor treatment and antiseizure medication.","authors":"Josien C C Scheepens, Pim B van der Meer, Linda Dirven, Maaike J Vos, Martin J B Taphoorn, Johan A F Koekkoek","doi":"10.1093/nop/npae103","DOIUrl":"10.1093/nop/npae103","url":null,"abstract":"<p><strong>Background: </strong>Epilepsy is a common symptom in patients with brain metastases (BMs), and because of the rising incidence of BMs, adequate seizure management is warranted. We conducted a systematic review on seizure outcomes after antitumor treatment and antiseizure medication (ASM) in patients with BMs from solid tumors and epilepsy.</p><p><strong>Methods: </strong>A literature search was performed in 6 databases up to February 2024. Extracted outcomes were rates for (1) seizure freedom, (2) ≥50% seizure reduction, and (3) treatment failure (for ASM only). Weighted averages (WAs) were calculated for outcomes after surgery at 6 months follow-up. Quality assessment of the included studies was performed using the Risk Of Bias In Non-randomized Studies of Interventions (ROBINS-I) tool.</p><p><strong>Results: </strong>We retrieved 2244 references, of which 16 studies were eligible for inclusion. Eight studies were at critical, and 8 studies at serious risk of bias. The WA of seizure freedom rates at 6 months after surgical resection was 64% (based on 3 studies at serious risk of bias, <i>n</i> = 151 patients). Results on ASM efficacy and tolerability were unreliable, as all eligible studies for these outcomes were at critical risk of bias.</p><p><strong>Conclusions: </strong>Limited available evidence from heterogeneous study populations demonstrated that in the majority of patients with epilepsy due to BMs, seizure freedom 6 months after surgical resection may be reached. No substantial evidence on ASM efficacy and tolerability in patients with epilepsy due to BMs is available. High-quality cohort studies are warranted to expand the evidence on seizure outcomes after antitumor and ASM treatment.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 3","pages":"376-388"},"PeriodicalIF":2.4,"publicationDate":"2024-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12137217/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144248928","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":"Symptom management in isocitrate dehydrogenase mutant glioma.","authors":"Tobias Walbert, Edward K Avila, Florien W Boele, Caroline Hertler, Christine Lu-Emerson, Pim B van der Meer, Katherine B Peters, Alasdair G Rooney, Jessica W Templer, Johan A F Koekkoek","doi":"10.1093/nop/npae088","DOIUrl":"10.1093/nop/npae088","url":null,"abstract":"<p><p>According to the 2021 World Health Organization classification of CNS tumors, gliomas harboring a mutation in isocitrate dehydrogenase (mIDH) are considered a distinct disease entity, typically presenting in adult patients before the age of 50 years. Given their multiyear survival, patients with mIDH glioma are affected by tumor and treatment-related symptoms that can have a large impact on the daily life of both patients and their caregivers for an extended period of time. Selective oral inhibitors of mIDH enzymes have recently joined existing anticancer treatments, including resection, radiotherapy, and chemotherapy, as an additional targeted treatment modality. With new treatments that improve progression-free and possibly overall survival, preventing and addressing daily symptoms becomes even more clinically relevant. In this review we discuss the management of the most prevalent symptoms, including tumor-related epilepsy, cognitive dysfunction, mood disorders, and fatigue, in patients with mIDH glioma, and issues regarding patient's health-related quality of life and caregiver needs in the era of mIDH inhibitors. We provide recommendations for practicing healthcare professionals caring for patients who are eligible for treatment with mIDH inhibitors.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 Suppl 1","pages":"i38-i48"},"PeriodicalIF":2.4,"publicationDate":"2024-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11703367/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142952283","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":"Practical management of patients with IDH-mutant glioma in the coming era of mIDH inhibitors: New drugs, new evidence, new guidelines, and new considerations.","authors":"Katherine B Peters, Marjolein Geurts","doi":"10.1093/nop/npae076","DOIUrl":"10.1093/nop/npae076","url":null,"abstract":"","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 Suppl 1","pages":"i2-i5"},"PeriodicalIF":2.4,"publicationDate":"2024-10-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11703364/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142952279","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":"Managing Cancer and Living Meaningfully in adults with brain metastases: A NIH ORBIT model phase II feasibility and proof-of-concept trial.","authors":"Ashlee R Loughan, Autumn Lanoye, Kelcie Willis, Sarah Ellen Braun, Alexandria Davies, Gary Rodin, Leroy Thacker, Amber Fox, Christopher Kleva, Giuliana Zarrella, Suzanne Mazzeo, Dace Svikis, Leigh Swartz","doi":"10.1093/nop/npae097","DOIUrl":"10.1093/nop/npae097","url":null,"abstract":"<p><strong>Background: </strong>Managing Cancer and Living Meaningfully (CALM) is a brief, evidence-based psychotherapy designed to help patients with advanced cancer cope with the practical and profound challenges of their illness. However, no study has systematically examined CALM in adults with brain metastases, despite the well-documented incidence of distress in this growing population. The primary aim of this trial was to assess the feasibility and acceptability of CALM in adults with brain metastases.</p><p><strong>Methods: </strong>Patients with brain metastases (<i>N</i> = 13) and elevated symptoms of depression and/or death anxiety enrolled in this single-arm trial. CALM was administered in 6 biweekly sessions, with outcomes assessed at baseline and post-intervention. Feasibility was assessed based on established metrics including enrollment and retention rates. Acceptability was measured by post-session surveys and post-intervention interviews. Preliminary signal change on measures of psychological distress was explored.</p><p><strong>Results: </strong>Of the 13 enrolled participants, 11 completed baseline assessments and initiated treatment: 73% female, <i>M</i> _age = 58 years (SD = 12.9; range = 37-75). Nine completed the study (81% retention rate). Overall, participants reported high perceived benefits and would recommend the program to others. Baseline to post-intervention assessments indicated improvements in depression, death anxiety, generalized anxiety, post-traumatic stress, suicidal ideation, and spiritual well-being. Life quality, substance use, and fear of cancer recurrence remained relatively stable.</p><p><strong>Conclusions: </strong>CALM is feasible and acceptable and may improve psychological distress in adults with brain metastases. The findings of this study align with our previous trial of patients with malignant glioma and support a future National Institute of Health Obesity Related Behavioral Intervention Trials phase II randomized pilot trial of CALM in neuro-oncology.</p><p><strong>Trial registration number: </strong>NCT05087095 registered on March 23, 2022.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 2","pages":"271-280"},"PeriodicalIF":2.5,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11913651/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664090","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":"Prevalence, treatment patterns, and survival of patients with brain metastases from small cell lung cancer: A retrospective study using the TriNetX Oncology Database.","authors":"Megan Parker, Anita Kalluri, Kelly Jiang, Joshua Materi, Tej D Azad, Joseph Murray, Jinny Suk Ha, David O Kamson, Lawrence R Kleinberg, Kristin J Redmond, Julie R Brahmer, Xiaobu Ye, Chetan Bettegowda, Jordina Rincon-Torroella","doi":"10.1093/nop/npae095","DOIUrl":"10.1093/nop/npae095","url":null,"abstract":"<p><strong>Background: </strong>Brain metastases (BM) portend increased morbidity and mortality in patients with small cell lung cancer (SCLC). We aimed to characterize the prevalence, timing, treatment patterns, and survival outcomes of BM associated with SCLC over the past decade.</p><p><strong>Methods: </strong>Data from 4014 patients with histologically confirmed SCLC were extracted from the TriNetX Oncology database. Clinical and demographic variables were compared between patients with and without BM using Chi-squared and <i>t</i>-tests. Kaplan-Meier and Cox regression analyses were used to evaluate overall survival (OS), after propensity score matching cohorts for age at diagnosis, sex, cancer stage at diagnosis, extracranial metastases, and cancer-directed therapy.</p><p><strong>Results: </strong>Among 4014 patients with SCLC, 35.0% had BM (9.9% synchronous, 21.2% metachronous, 3.9% precocious). Patients who developed BM were younger (<i>P</i> < .001) at SCLC diagnosis, more likely Black/African American (<i>P</i> = .0068), and presented with more advanced cancer stages (<i>P</i> < .001) than patients who did not develop BM. The median BM-free survival from the time of SCLC diagnosis was 27.9 months. Patients with BM received higher rates of cancer-directed therapies than those without BM. Synchronous BM was associated with lower OS than metachronous BM after the diagnosis of SCLC (HR[95% CI] = 1.56[1.32-1.83]), but there was no difference in OS after the BM diagnosis. OS did not differ between patients with BM and patients with extracranial metastases only, following the diagnosis of metastatic disease.</p><p><strong>Conclusions: </strong>Our findings support that independently of the chronicity of BM diagnosis, patients with SCLC have poor survival once the diagnosis of BM is conferred.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 2","pages":"257-270"},"PeriodicalIF":2.5,"publicationDate":"2024-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11913649/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664060","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":"The feasibility of a multi-site, clinic-supported, and tailored neuro-oncology exercise program.","authors":"Julia T Daun, Lauren C Capozzi, Tana Dhruva, Gloria Roldan Urgoiti, Meghan H McDonough, Emma McLaughlin, Mannat Bansal, Allan Brett, Jacob C Easaw, Margaret L McNeely, George J Francis, Tanya Williamson, Jessica Danyluk, Paula A Ospina, Christine Lesiuk, Paula de Robles, Catriona Leckie, S Nicole Culos-Reed","doi":"10.1093/nop/npae093","DOIUrl":"10.1093/nop/npae093","url":null,"abstract":"<p><strong>Background: </strong>To address the lack of access to supportive cancer care resources, the purpose of this study was to examine the feasibility of a tailored exercise program for neuro-oncology patients.</p><p><strong>Methods: </strong>Patients with a primary brain tumor diagnosis, >18 years, and able to consent in English were recruited at 2 tertiary cancer centers in Alberta. Recruitment occurred via the electronic medical record as well as self-referral. A 12-week, tailored exercise intervention with health coaching was delivered in both one-on-one and group-based formats, either in-person or online. Measures of feasibility included tracking referral, enrollment, intervention completion and adherence, measurement completion, fidelity, participant satisfaction, and safety. Participant-reported outcomes and functional fitness were assessed at baseline and 12 weeks. Objective physical activity was tracked via a Garmin activity tracker.</p><p><strong>Results: </strong>Recruitment occurred between April 2021-December 2022. <i>N</i> = 70 patients enrolled in the study and <i>n</i> = 51 completed the intervention. The referral rate was 31%, the enrollment rate was 66%, and intervention completion and adherence rates were 82.3% and 89.7%. At baseline and 12 weeks, measurement completion rates were 100% and 77.4% for patient-reported outcomes, and 98.4% and 75.8% for functional fitness. The average wear-time for the activity tracker was 72.8%. Fidelity of intervention delivery was 100% for exercise sessions and 87.8% for health coaching. Overall participant satisfaction was 86.5%. No major and 4 minor adverse events occurred.</p><p><strong>Conclusions: </strong>Delivery of a tailored neuro-oncology exercise program with referral included via the electronic medical record is feasible. Future work is needed to optimize tailored programming as well as to address factors critical for implementation into standard cancer care.</p><p><strong>Clinical trials registration: </strong>NCT04831190 (https://clinicaltrials.gov/ct2/show/NCT04831190).</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 1","pages":"131-142"},"PeriodicalIF":2.4,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11798609/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365336","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":"Associations between central nervous system tumor diagnosis stage and survival and Medicaid enrollment among children, adolescents, and young adults.","authors":"Kimberly J Johnson, Derek S Brown, Tess Thompson, Justin M Barnes, Allison A King","doi":"10.1093/nop/npae094","DOIUrl":"10.1093/nop/npae094","url":null,"abstract":"<p><strong>Background: </strong>Medicaid enrollment has been associated with disparities in younger cancer patient survival. To further understand this association for central nervous system (CNS) tumor patients, we used Surveillance, Epidemiology, and End Results (SEER)-Medicaid-linked data to examine associations between Medicaid enrollment and enrollment timing and (1) diagnosis stage, and (2) CNS tumor death.</p><p><strong>Methods: </strong>Individuals diagnosed with a first malignant primary CNS tumor between 0 and 39 years from 2006 to 2013 were included. Medicaid enrollment was first classified as enrolled versus not enrolled with those enrolled further classified as having continuous, discontinuous (at diagnosis or other discontinuous), or other enrollment. We used logistic and Cox Proportional Hazards regression stratified by age to calculate adjusted odds ratios (ORs) and hazard ratios (HRs) for those 0-14 and 15-39 years.</p><p><strong>Results: </strong>Among 10 107 CNS tumor patients, we found significantly higher odds of regional/distant versus in situ/localized stage diagnoses for those with other discontinuous (OR_0-14 = 1.50, 95% CI: 1.15-1.95) and at diagnosis (OR_15-39 = 1.41, 95% CI: 1.11-1.78) Medicaid enrollment versus those not enrolled. Those enrolled versus not enrolled in Medicaid had a higher hazard of CNS tumor death for both age groups (HR_0-14 = 1.60 95% CI: 1.37-1.86; HR_15-39 = 1.50, 95% CI: 1.39-1.62) with the highest hazards for those enrolled at diagnosis (HR_0-14 = 1.83, 95% CI: 1.51-2.22; HR_15-39 = 1.93, 95% CI: 1.77-2.10).</p><p><strong>Conclusions: </strong>Medicaid enrollment is associated with a higher risk of CNS tumor death with an almost 2-fold higher risk for young CNS tumor patients enrolled at diagnosis. These results support the critical need for consistent health insurance coverage for young CNS tumor patients.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 2","pages":"246-256"},"PeriodicalIF":2.5,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11913644/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143664075","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":"Pediatric metastatic extracranial high-grade glioma: A case report and literature review.","authors":"Naba Ali, Bree R Eaton, Jason R Fangusaro, Robert C Castellino, José E Velázquez Vega, Joshua J Chern, Matthew Schniederjan, Prabhumallikarjun Patil","doi":"10.1093/nop/npae083","DOIUrl":"10.1093/nop/npae083","url":null,"abstract":"<p><p>We report a case of a 10-year-old male with a right frontal diffuse pediatric-type high-grade glioma (HGG), H3-wild-type (WT), and IDH-WT, diagnosed at the age of 9 years, who underwent gross total resection, 60 Gy focal proton radiation in 30 fractions to the resection cavity with concurrent temozolomide followed by maintenance chemotherapy with temozolomide and lomustine. One month after completion of maintenance chemotherapy, he developed subcutaneous swelling in the right temporal region and was treated with antibiotics for presumed lymphadenitis. Two months later, he developed a recurrent painless right parietal soft tissue mass that failed to respond to antibiotic therapy. This prompted evaluation by MRI which revealed new enhancing masses in the cerebellum and extracranial soft tissue mass in the right temporal region. He underwent gross total resection of both masses. Pathologic analysis confirmed both masses as recurrent HGG. Molecular markers, however, differed between the 2 sites of recurrence. He proceeded to complete hypofractionated proton therapy at sites of recurrence. Three months later, he was found to have tumor dissemination into the spine and brain for which he received proton therapy to the whole spine and brain. Due to the presence of <i>CDK4</i> amplification at diagnosis and both sites of tumor recurrence, he then received palliative treatment with the CDK4/6 inhibitor, abemaciclib, for the final 5 months of his life. Since extracranial HGG is a rare presentation, with few cases reported in the pediatric population, we report this case and review previously published literature.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 1","pages":"160-167"},"PeriodicalIF":2.5,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11798610/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365328","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":"\"Aiming at a moving target\"-The daily life experiences of adolescents and young adults with a low-grade glioma.","authors":"Milou J P Reuvers, Vivian W G Burgers, Johan A F Koekkoek, Dieta Brandsma, Annette Compter, Mathilde C M Kouwenhoven, Martin J van den Bent, Simone A M M Frissen, Olga Husson, Winette T A van der Graaf","doi":"10.1093/nop/npae080","DOIUrl":"10.1093/nop/npae080","url":null,"abstract":"<p><strong>Background: </strong>Low-grade gliomas (LGG) are among the most frequently occurring tumors in adolescent and young adult (AYA) patients (aged 18-39 years old at primary diagnosis). These tumors have a variable prognosis, presenting challenges for patients in shaping their future. This study aimed to identify the age-specific experiences and needs of AYA patients with LGG in their daily lives.</p><p><strong>Methods: </strong>In-depth interviews were conducted with AYA patients diagnosed with LGG. Thematic analysis was performed to derive the age-specific codes, looking for overarching themes and sub-themes.</p><p><strong>Results: </strong>Sixteen patients participated in this study. The cognitive symptoms of the disease (including difficulty concentrating, memory issues, and speech problems) are invisible to others but caused significant disruptions in many domains that were particularly important to AYA patients (eg, employment, family life, and autonomy). Additionally, the uncertainty regarding their life expectancy led to difficulties in making decisions about the future. They also perceived a lack of control over their future and the time they had left.</p><p><strong>Conclusions: </strong>LGG have a significant impact on AYA patients. However, this impact is not fully understood by others close to them. The results highlight the importance of providing these patients with appropriate peer support, interventions tailored to both their disease and life phase, utilizing a multidisciplinary approach, and maintaining a focus on long-term support for these patients. It is crucial to provide AYA care for these patients within the neurology department, as LGG involve both tumor- and age-specific problems.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 1","pages":"113-121"},"PeriodicalIF":2.4,"publicationDate":"2024-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11798596/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365305","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}