Neuro-oncology practice最新文献

{"title":"Illness understanding and religiousness in patients with recurrent glioblastoma.","authors":"John T Fortunato, Leah E Walsh, Laura C Polacek, Anne S Reiner, Tobias Walbert, Alissa A Thomas, Justin Buthorn, Allison Sigler, Holly G Prigerson, Allison J Applebaum, Eli L Diamond","doi":"10.1093/nop/npae068","DOIUrl":"10.1093/nop/npae068","url":null,"abstract":"<p><strong>Background: </strong>Patients with glioblastoma (GBM) often have inaccurate perceptions of prognosis. Strong religious beliefs have been associated with limited illness understanding (IU) in patients with advanced cancer, but IU and religiousness have not been investigated in patients with GBM. The aim of this study was to evaluate the association between religiousness and spirituality and IU in patients with GBM.</p><p><strong>Methods: </strong>Patients enrolled in a prospective multicenter study of recurrent GBM (Coping with Glioblastoma, NCT02375841). Within one month of medical visits discussing MRI scans showing GBM progression, patients completed study surveys containing published measures of IU and religiousness. IU was compared between participants with moderate or high versus slight or no religiousness based on several patient-reported prompts using Fisher's exact tests.</p><p><strong>Results: </strong>Twenty-four patients completed surveys of religiousness and IU. IU was partial within our cohort. Fifteen participants (62.5%) acknowledged that their illness was terminal. Only 6 (25%) correctly acknowledged their prognosis (months). Eleven patients (46%) were moderately or very religious, while 9 (38%) were either slightly religious or not at all religious. High religiousness and spirituality were each associated with partial IU (<i>P</i> = .06 and <i>P</i> = .01, respectively). A belief that God could perform a miracle to cure them of cancer and a belief in sanctity through suffering were also each associated with partial IU.</p><p><strong>Conclusions: </strong>This prospective study that suggests religiousness, including the belief in miracles and a belief in sanctification through suffering, might influence patients' IU. Further research is warranted to study this association.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 1","pages":"100-112"},"PeriodicalIF":2.5,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11798605/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365325","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":"Palliative care services in neuro-oncology: Mind the gap.","authors":"Johan A F Koekkoek, Heather E Leeper","doi":"10.1093/nop/npae072","DOIUrl":"10.1093/nop/npae072","url":null,"abstract":"","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 5","pages":"513-514"},"PeriodicalIF":2.5,"publicationDate":"2024-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11398924/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142292228","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":"<i>G</i>lioma <i>r</i>esource <i>o</i>utreach <i>w</i>ith <i>s</i>upport: A program to identify and initiate supportive care interventions for unmet needs among adult lower-grade glioma patients.","authors":"Rachel Garcia Fox, Ugonma N Chukwueke, Timothy Sannes, Damien Miran, Daniel Chiu, Christina Bagley, Emerson Grace Holmes, Benjamin Peirce, Rameen Beroukhim, Gilbert Youssef, J Ricardo McFaline-Figueroa, Elisa Aquilanti, Eudocia Quant Lee, Lakshmi Nayak, Patrick Y Wen, L Nicolas Gonzalez Castro, David A Reardon","doi":"10.1093/nop/npae065","DOIUrl":"10.1093/nop/npae065","url":null,"abstract":"<p><strong>Background: </strong>Lower-grade (WHO grades 2-3) gliomas typically affect young and middle-aged adults and exhibit <i>isocitrate dehydrogenase</i> (<i>IDH</i>) mutations. For such patients, symptoms related to the tumor and associated treatment contribute to morbidity and erode quality of life. With improved treatment, a better understanding of these effects over time is critically needed. Existing data characterizing unmet needs of lower-grade glioma patients is limited and little consensus exists on addressing these needs in clinical practice.</p><p><strong>Methods: </strong>In order to better identify and address the unmet needs of lower-grade glioma patients, focus groups among patients and caregivers were initially conducted among patients treated at a single academic center. A semi-structured interview guide to comprehensively understand unmet needs was then developed. Each patient-defined unmet need was categorized into domains through qualitative content analysis. In parallel, a database of established local and regional community-based resources was established, and a dedicated resource specialist provided patient-specific referrals and follow-up.</p><p><strong>Results: </strong>Eighty-five patients were interviewed. Median age was 41 years and the median time from tumor diagnosis was 63 months. Approximately 68% had a WHO grade 2 tumor and 60% were off therapy. Qualitative analysis of interview content identified 5 overarching domains of unmet need: Psychosocial; Neurologic/Cognitive; Lifestyle; Financial; and Other Medical. At least one unmet need was identified by 71% of participants and the most common domains were Psychosocial (40.7%) and Lifestyle (34.9%).</p><p><strong>Conclusions: </strong>Our program begins to address frequently unmet survivorship needs of lower-grade glioma patients that spanned 5 major domains. Further research aimed to better define and address unmet needs among these patients is warranted.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 1","pages":"87-99"},"PeriodicalIF":2.5,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11798613/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365306","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 COVID-19 pandemic experience for patients with central nervous system tumors: Differences in patient-reported outcomes and practice recommendations.","authors":"Amanda L King, Kayla N Roche, Elizabeth Vera, Valentina Pillai, Lily Polskin, Alvina A Acquaye-Mallory, Lisa Boris, Eric Burton, Anna Choi, Ewa Grajkowska, Heather E Leeper, Marissa Panzer, Marta Penas-Prado, Jennifer Reyes, Solmaz Sahebjam, Brett J Theeler, Jing Wu, Mark R Gilbert, Terri S Armstrong","doi":"10.1093/nop/npae067","DOIUrl":"10.1093/nop/npae067","url":null,"abstract":"<p><strong>Background: </strong>This study explored differences in patient-reported outcomes (PROs) for patients with central nervous system (CNS) tumors during COVID, compared to pre-pandemic assessments, in light of impacted access to in-person care.</p><p><strong>Methods: </strong>Patient-reported outcomes (PROMIS-Anxiety and Depression Short-Forms, EQ-5D-3L, MDASI-BT/Spine, NeuroQoL-Perceived Cognitive Functioning) were collected from 149 participants on the Neuro-Oncology Branch Natural History Study seen during the first year of COVID between March 2020 and February 2021, which were compared to assessments collected pre-COVID. Paired sample <i>t</i>-tests and proportion tests (<i>z</i>-tests) were used to compare PROs with effect sizes reported using Hedges <i>g</i> and Cohen's <i>h</i>. Logistic regression models with backwards selection were used to identify risk factors for high levels of depression and anxiety pre- and during COVID.</p><p><strong>Results: </strong>Participants were primarily male (54%) and Caucasian (84%) with a median age of 46 (range 20-79) and 66% had high-grade tumors. More patients reported moderate-severe depressive symptoms during the COVID year, compared to pre-COVID assessments (13% vs 8%, Cohen's <i>h</i> = 0.17, <i>P</i> = .021), with modest increases in symptom burden and cognitive dysfunction reported as well. Logistic regressions revealed that during COVID, concurrent moderate-severe distress and low tumor grade predicted depression and anxiety, with psychotropic medication use also predicting depression while active treatment predicted anxiety.</p><p><strong>Conclusion: </strong>During COVID, patients experienced higher levels of depression, which has the potential to negatively influence treatment success and survival. Future work is needed to incorporate innovative tools and interventions that can be utilized remotely to identify and target mood disturbance in these vulnerable patients.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"12 1","pages":"76-86"},"PeriodicalIF":2.4,"publicationDate":"2024-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11798606/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143365333","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":"Interventional neurorehabilitation for glioma patients: A systematic review.","authors":"Justyna O Ekert, Anshit Goyal, Jacob S Young, Shawn L Hervey-Jumper, Mitchel S Berger","doi":"10.1093/nop/npae066","DOIUrl":"10.1093/nop/npae066","url":null,"abstract":"<p><p>Harnessing the neuroplastic potential of the human brain is being increasingly recognized as an important neuro-oncological paradigm to facilitate safe resection of brain tumors while preserving neurological function and quality of life. Interventional neurorehabilitation, employing both invasive and noninvasive neuromodulation techniques, represents an important emerging therapeutic strategy to induce or enhance neural plasticity to promote functional recovery in brain tumor patients. This study aimed to conduct a comprehensive review of interventional neurorehabilitation techniques for glioma patients.</p><p><strong>Methods: </strong>In accordance with PRISMA guidelines, searches of Medline, Embase, Web of Science, APA PsycINFO, and Cochrane were undertaken from database inception to November 28, 2023. Studies reporting on neuromodulation applied to glioma patients were included.</p><p><strong>Results: </strong>Seven studies reporting findings from 118 patients met the inclusion criteria. Three neuromodulation techniques were identified and included transcranial magnetic stimulation (TMS) reported in 5 out of 7 (71.4%) studies; transcranial direct current stimulation (tDCS); and continuous cortical electrical stimulation (cCES) using grid electrodes, reported in one study each. All studies applying noninvasive stimulation to ameliorate postoperative deficits demonstrated an improvement on at least one outcome measure. The 2 studies applying tDCS and cCES to induce plasticity reported evidence of functional reorganization.</p><p><strong>Conclusions: </strong>There is emerging evidence of benefits of neuromodulation to improve postoperative outcome in glioma patients. In the current literature, noninvasive stimulation has shown to have a favorable safety profile. Large-scale, double-blind, sham-controlled trials are warranted to further investigate the effectiveness of these interventions for modulating different cognitive networks in patients undergoing glioma surgery.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 6","pages":"679-690"},"PeriodicalIF":2.4,"publicationDate":"2024-07-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11567740/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648520","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":"Validation of the graded prognostic assessment and recursive partitioning analysis as prognostic tools using a modern cohort of patients with brain metastases.","authors":"Jacob Sperber, Seeley Yoo, Edwin Owolo, Tara Dalton, Tanner J Zachem, Eli Johnson, James E Herndon, Annee D Nguyen, Harrison Hockenberry, Brandon Bishop, Nancy Abu-Bonsrah, Steven H Cook, Peter E Fecci, Paul W Sperduto, Margaret O Johnson, Melissa M Erickson, C Rory Goodwin","doi":"10.1093/nop/npae057","DOIUrl":"10.1093/nop/npae057","url":null,"abstract":"<p><strong>Background: </strong>Prognostic indices for patients with brain metastases (BM) are needed to individualize treatment and stratify clinical trials. Two frequently used tools to estimate survival in patients with BM are the recursive partitioning analysis (RPA) and the diagnosis-specific graded prognostic assessment (DS-GPA). Given recent advances in therapies and improved survival for patients with BM, this study aims to validate and analyze these 2 models in a modern cohort.</p><p><strong>Methods: </strong>Patients diagnosed with BM were identified via our institution's Tumor Board meetings. Data were retrospectively collected from the date of diagnosis with BM. The concordance of the RPA and GPA was calculated using Harrell's <i>C</i> index. A Cox proportional hazards model with backwards elimination was used to generate a parsimonious model predictive of survival.</p><p><strong>Results: </strong>Our study consisted of 206 patients diagnosed with BM between 2010 and 2019. The RPA had a prediction performance characterized by Harrell's <i>C</i> index of 0.588. The DS-GPA demonstrated a Harrell's <i>C</i> index of 0.630. A Cox proportional hazards model assessing the effect of age, presence of lung, or liver metastases, and Eastern Cooperative Oncology Group (ECOG) performance status score of 3/4 on survival yielded a Harrell's <i>C</i> index of 0.616. Revising the analysis with an uncategorized ECOG demonstrated a <i>C</i> index of 0.648.</p><p><strong>Conclusions: </strong>We found that the performance of the RPA remains unchanged from previous validation studies a decade earlier. The DS-GPA outperformed the RPA in predicting overall survival in our modern cohort. Analyzing variables shared by the RPA and DS-GPA produced a model that performed analogously to the DS-GPA.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 6","pages":"763-771"},"PeriodicalIF":2.4,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11567744/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648531","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":"Histopathologic and molecular profile of gliomas diagnosed in Lagos, Nigeria.","authors":"Lateef A Odukoya, Cristiane M Ida, Jeanette E Eckel-Passow, Thomas M Kollmeyer, Rachael Vaubel, Daniel H Lachance, Ekokobe Fonkem, Kabir B Badmos, Olufemi B Bankole, Henry Llewellyn, Gasper J Kitange, Kenneth Aldape, Adetola O Daramola, Charles C Anunobi, Robert B Jenkins","doi":"10.1093/nop/npae059","DOIUrl":"10.1093/nop/npae059","url":null,"abstract":"<p><strong>Background: </strong>The optimal diagnosis and management of patients with brain tumors currently uses the 2021 WHO integrated diagnosis of histomorphologic and molecular features. However, neuro-oncology practice in resource-limited settings usually relies solely on histomorphology. This study aimed to classify glioma cases diagnosed in the Department of Anatomic and Molecular Pathology, Lagos University Teaching Hospital, using the 2021 WHO CNS tumor classification.</p><p><strong>Methods: </strong>Fifty-six brain tumors from 55 patients diagnosed with glioma between 2013 and 2021 were reevaluated for morphologic diagnosis. Molecular features were determined from formalin-fixed paraffin-embedded (FFPE) tissue using immunohistochemistry (IHC) for IDH1-R132H, ATRX, BRAF-V600E, p53, Ki67, and H3-K27M, OncoScan chromosomal microarray for copy number, targeted next generation sequencing for mutation and fusion and methylation array profiling.</p><p><strong>Results: </strong>Of 55 central nervous system tumors, 3 were excluded from histomorphologic reevaluation for not being of glial or neuroepithelial origin. Of the remaining 52 patients, the median age was 20.5 years (range: 1 to 60 years), 38(73%) were males and 14(27%) were females. Seventy-one percent of the gliomas evaluated provided adequate DNA from archival FFPE tissue blocks. After applying the 2021 WHO diagnostic criteria the initial morphologic diagnosis changed for 35% (18/52) of cases. Diagnoses of 5 (9.6%) gliomas were upgraded, and 7 (14%) were downgraded.</p><p><strong>Conclusions: </strong>This study shows that the incorporation of molecular testing can considerably improve brain tumor diagnoses in Nigeria. Furthermore, this study highlights the diagnostic challenges in resource-limited settings and what is at stake in the global disparities of brain tumor diagnosis.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 6","pages":"753-762"},"PeriodicalIF":2.4,"publicationDate":"2024-06-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11567748/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648519","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":"Prospective assessment of end-of-life symptoms and quality of life in patients with high-grade glioma.","authors":"Tobias Walbert, Lonni Schultz, Tom Mikkelsen, James Matthew Snyder, Joel Phillips, John T Fortunato","doi":"10.1093/nop/npae056","DOIUrl":"10.1093/nop/npae056","url":null,"abstract":"<p><strong>Background: </strong>Glioblastoma and high-grade glioma (HGG) remain non-curable diseases. Symptoms and Quality-of-life (QoL) in the end-of-life (EoL) phase have not been prospectively studied with validated instruments. Therefore, we prospectively assessed symptom progression, symptom management, and hospice utilization in patients with treatment-refractory progressive HGG.</p><p><strong>Methods: </strong>Patients failing bevacizumab and presenting with a Karnofsky performance score of ≤60, and their caregivers, were eligible. Symptoms, medication, and clinical management were tracked with serial telephone calls every 2 weeks until death utilizing clinical evaluations and the MD Anderson Symptom Inventory Brain Tumor Module (MDASI-BT). The MDASI-BT rates symptoms on a scale from 0 (no symptoms) to 10 (worst).</p><p><strong>Results: </strong>Fifty-four patient-caregiver dyads were enrolled in the study. Amongst 50 evaluable patients, the most severe symptoms during the last 2 weeks prior to death were drowsiness (9.09 ± 1.44), difficulty with concentration (8.87 ± 2.29), fatigue (8.63 ± 2.03), difficulty speaking (8.44 ± 2.42), weakness (8.27 ± 3.44), and difficulty with understanding (7.71 ± 2.94). All symptoms, except weakness and memory impairment, which were high at baseline, showed statistically significant progression. Seizures were rare and did not progressively worsen near the end of life (1.38 ± 3.02). The decision-making composite score almost doubled during the EoL phase (8.58 ± 1.53).</p><p><strong>Conclusions: </strong>This is the first prospective study describing symptoms and QoL issues in patients with HGG. Patients suffer from high morbidity in the EoL phase and should be offered early palliative and hospice care to assure proper symptom management and advance care planning.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 6","pages":"733-739"},"PeriodicalIF":2.4,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11567736/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648543","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":"Cerebrospinal fluid diversion prior to posterior fossa tumor resection in adults: A systematic review.","authors":"Amisha Vastani, Asfand Baig Mirza, Fizza Ali, Allayna Iqbal, Chaitanya Sharma, Abbas Khizar Khoja, Babar Vaqas, José Pedro Lavrador, Jonathan Pollock","doi":"10.1093/nop/npae055","DOIUrl":"10.1093/nop/npae055","url":null,"abstract":"<p><strong>Background: </strong>Posterior fossa tumors (PFTs) comprise 15%-20% of adult brain tumors, with the reported frequency of hydrocephalus (HCP) ranging between 3.7% and 58%. Most HCP resolves after resection of PFTs, but studies report persistent or new-onset HCP occurring in between 2% and 7% of cases. Preoperative cerebrospinal fluid (CSF) diversion with a ventriculoperitoneal shunt (VPS), external ventricular drain (EVD), or endoscopic third ventriculostomy (ETV) has been shown to improve outcomes. Evidence regarding the efficacy of these techniques is limited.</p><p><strong>Methods: </strong>A systematic literature search was performed in line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Data points were extracted from individual patient cohort data. A failure rate was determined by the number of patients requiring further postoperative CSF diversion.</p><p><strong>Results: </strong>In total, 8863 records were identified. Thirteen studies consisting of 17 patient cohorts met our inclusion criteria. Across all individual cohort studies, 2976 patients underwent surgical resection of a PFT in whom the frequency of hydrocephalus at presentation was 22.98% (1.92%-100%), and persistent hydrocephalus following preoperative CSF diversion was 13.63% (0%-18%). Of the 684 hydrocephalic patients, 83.63% underwent CSF diversion in the form of ETV, EVD, or VPS. Between years 1992 and 2020, 1986 and 2021, and 1981and 2013, the pre-resection ETV, EVD, and VPS failure rates were 14.66% (17/116), 16.26% (60/369), and 0% (0/87), respectively.</p><p><strong>Conclusions: </strong>This systematic review highlights that VPS has a better failure rate profile in minimizing postoperative hydrocephalus in adult patients with PFTs.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 6","pages":"703-712"},"PeriodicalIF":2.4,"publicationDate":"2024-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11567752/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648514","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":"Identifying research priorities and essential elements of palliative care services for people facing malignant brain tumors: A participatory co-design approach.","authors":"Liz Salmi, Shirley Otis-Green, Adam Hayden, Lynne P Taylor, Maija Reblin, Bethany M Kwan","doi":"10.1093/nop/npae052","DOIUrl":"10.1093/nop/npae052","url":null,"abstract":"<p><strong>Background: </strong>Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods.</p><p><strong>Methods: </strong>Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed \"essential elements\" of brain cancer PC services.</p><p><strong>Results: </strong>We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients' unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services.</p><p><strong>Conclusions: </strong>The brain tumor community calls for research testing PC service models for patients that incorporate the \"essential elements\" of palliative care.</p>","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":"11 5","pages":"556-565"},"PeriodicalIF":2.4,"publicationDate":"2024-06-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11398937/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142292227","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}