Neuro-Oncology Practice最新文献

{"title":"Insights from GoFundMe Posts: Analyzing GoFundMe Financial Aid Requests from Brain Tumor Patients in Ontario, Canada","authors":"Kaviya Devaraja, Jonathan Avery, Yajur Iyengar, Yunyi Zhang, Seth A Climans","doi":"10.1093/nop/npae069","DOIUrl":"https://doi.org/10.1093/nop/npae069","url":null,"abstract":"\u0000 \u0000 \u0000 Primary CNS tumors significantly affect individuals globally, with patients in Ontario, Canada, often bearing financial burdens for treatments such as oral chemotherapy due to insufficient coverage, resulting in complex insurance processes or out-of-pocket payments. However, limited understanding exists regarding other direct and indirect financial implications of their diagnosis. This study examines the financial strains, unmet needs, and overarching challenges encountered by Ontario's brain tumor patients, utilizing GoFundMe posts as a unique data source to explore additional financial costs linked to CNS tumor diagnoses in the region.\u0000 \u0000 \u0000 \u0000 A qualitative descriptive design employing thematic analysis analyzed GoFundMe posts supporting CNS tumor patients in Ontario from 2014 to 2021. A search strategy targeted posts featuring primary CNS tumor keywords, with NVivo 10 software facilitating post organization and coding.\u0000 \u0000 \u0000 \u0000 Focused on Ontario, the study yielded a final dataset of 154 posts from an initial pool of 9025, revealing further financial strain due to income loss among patients and caregivers. Posts highlighted various concerns: 1) navigating the complexities of accessing support services; 2) worries about family's long-term financial and overall well-being; 3) insufficient public awareness about the financial and emotional burden on those affected; and 4) seeking emotional support, hope, and encouragement from the community.\u0000 \u0000 \u0000 \u0000 These GoFundMe posts highlight a connection between financial burden, emotional distress, and the need for improved access to financial and emotional support services. The results emphasize distinct financial challenges faced by CNS tumor patients within Ontario's healthcare system.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"119 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141821983","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Simulation-Based Caregiving Skills Training for Family Members of High-Grade Glioma Patients","authors":"Meagan Whisenant, S. Weathers, Yisheng Li, Ellen Aldrich, Kristin Ownby, Jessica Thomas, An T Ngo-Huang, Eduardo Bruera, K. Milbury","doi":"10.1093/nop/npae025","DOIUrl":"https://doi.org/10.1093/nop/npae025","url":null,"abstract":"\u0000 \u0000 \u0000 Because family caregivers of patients with a high-grade glioma experience high levels of distress and feel unprepared in performing the complex caregiving tasks associated with the disease and its treatment, we pilot-tested a caregiving skills intervention that integrates hands-on caregiving with coping skill training.\u0000 \u0000 \u0000 \u0000 In this single-arm trial, caregivers participated in a 4-session research nurse-led intervention involving simulation-based caregiving skills training at the hospital and psychoeducation delivered via videoconference. We collected measures of patients’ and caregivers’ psychological symptoms (HADS); caregivers’ caregiving self-efficacy (CSE) and role adjustment (CRA); and patient’s cancer-related symptoms (MDASI) at baseline and again post-intervention. We tracked feasibility data.\u0000 \u0000 \u0000 \u0000 We approached 29 dyads of which 10 dyads (34%) consented. All patients (mean age: 60 years, 89% male) and caregivers (mean age: 58 years, 80% female, 80% spouses) completed the baseline and 7 dyads completed the follow-up assessments (attrition was related to patient’s hospice transfer). Seven caregivers completed all 4 sessions and rated the program as beneficial. Paired t-tests revealed a significant improvement in caregiving self-efficacy at 6 weeks post-intervention (t =-3.06, P=.02). Although improvements in caregiver role adjustment and patient and caregiver symptoms were not observed, no decreases in symptom burden or role adjustment were found during the follow-up period.\u0000 \u0000 \u0000 \u0000 This novel supportive care program appears to be safe, feasible, acceptable, and perceived as useful for caregivers of patients with high-grade glioma. Based on feasibility indicators and a signal of intervention efficacy, a randomized controlled trial is warranted.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":" 13","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140218006","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives","authors":"F. Boele, L. Rosenlund, S. Nordentoft, Sara Melhuish, E. Nicklin, I. Rydén, A. Williamson, M. Donders-Kamphuis, M. Preusser, E. Le Rhun, B. Kiesel, G. Minniti, J. Furtner, L. Dirven, M. Taphoorn, N. Galldiks, R. Rudà, A. Chalmers, Susan C Short, K. Piil","doi":"10.1093/nop/npae023","DOIUrl":"https://doi.org/10.1093/nop/npae023","url":null,"abstract":"\u0000 \u0000 \u0000 Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patients’ needs and referral to services.\u0000 \u0000 \u0000 \u0000 Members of the European Association of Neuro-Oncology (EANO) and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering availability of services, screening and referral practice. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored.\u0000 \u0000 \u0000 \u0000 In total, 103 participants completed the survey (67% women; 57% medical doctors). Fifteen professions from 23 countries were represented. Various rehabilitation, supportive- and palliative care services were available yet rated ‘inadequate’ by 21-37% of participants. Most respondents with a clinical role (n=94) declare to screen (78%) and to refer (83%) their patients routinely for physical/cognitive/emotional issues. Survey completers (n=103) indicated the main reasons for not screening/referring were 1) lack of suitable referral options (50%); 2) shortage of healthcare professionals (48%); 3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology specific issues (75%), improving availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%).\u0000 \u0000 \u0000 \u0000 Detecting and managing neuro-oncology patients’ and caregivers’ rehabilitation, supportive- and palliative care needs can be improved. Better international collaboration can help address healthcare disparities.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"23 24","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140240518","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Clinician Perspectives on Integrating Neuro-oncology and Palliative Care for Patients with High-Grade Glioma","authors":"Rita C. Crooms, Jeannys F. Nnemnbeng, Jennie W Taylor, Nathan E Goldstein, K. Gorbenko, Barbara G Vickrey","doi":"10.1093/nop/npae022","DOIUrl":"https://doi.org/10.1093/nop/npae022","url":null,"abstract":"\u0000 \u0000 \u0000 Patients with high-grade glioma have high palliative care needs, yet few receive palliative care consultation. This study aims to explore themes on 1) benefits of primary (delivered by neuro-oncologists) and specialty (SPC) palliative care and 2) barriers to SPC referral, according to a diverse sample of clinicians.\u0000 \u0000 \u0000 \u0000 From 9/2021-5/2023, 10 palliative physicians and 10 neuro-oncologists were recruited via purposive sampling for diversity in geographic setting, seniority, and practice structure. Semi-structured, 45-minute interviews were audio-recorded, professionally transcribed, and coded by two investigators. A qualitative, phenomenological approach to thematic analysis was used.\u0000 \u0000 \u0000 \u0000 Regarding primary palliative care, 1) neuro-oncologists have primary ownership of cancer-directed treatment and palliative management; 2) the neuro-oncology clinic is glioma patients’ medical home. Regarding SPC, 1) palliative specialists’ approach is beneficial even without disease-specific expertise; 2) palliative specialists have time to comprehensively address palliative needs; 3) earlier SPC enhances its benefits. For referral barriers, 1) appointment burden can be mitigated with telehealth, home-based, and embedded palliative care; 2) heightened stigma associating SPC with hospice in a population with high death anxiety can be mitigated with earlier referral to promote rapport-building; 3) lack of neuro-oncologic expertise among palliative specialists can be mitigated by emphasizing their role in managing non-neurologic symptoms, coping support, and anticipatory guidance.\u0000 \u0000 \u0000 \u0000 These themes emphasize the central role of neuro-oncologists in addressing palliative care needs in glioma, without obviating the need for or benefits of SPC. Tailored models may be needed to optimize the balance of primary and specialty palliative care in glioma.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"12 8","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140244436","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Burnout and career satisfaction in young neuro-oncology investigators: results of the Society for Neuro-Oncology (SNO) young investigator survey","authors":"Gilbert Youssef, A. Acquaye-Mallory, Elizabeth Vera, M. G. Chheda, Gavin P Dunn, Jennifer Moliterno, Barbara J O’Brien, Monica Venere, S. Yust-Katz, Eudocia Q Lee, Terri S. Armstrong","doi":"10.1093/nop/npae018","DOIUrl":"https://doi.org/10.1093/nop/npae018","url":null,"abstract":"\u0000 \u0000 \u0000 Burnout is a syndrome characterized by emotional exhaustion, depersonalization, and a reduced sense of accomplishment, which commonly arises from chronic workplace stress in the medical field. Given the higher risk of burnout in younger age groups reported in some studies, the Society for Neuro-Oncology (SNO) Young Investigator (YI) and Wellness Committees combined efforts to examine burnout in the SNO YI membership in order to better understand and address their needs.\u0000 \u0000 \u0000 \u0000 We distributed an anonymous online survey to SNO members in 2019. Only those meeting the definition of a YI were asked to complete the survey. The survey consisted of questions about personal and professional characteristics as well as the validated Maslach Burnout Inventory-Human Services Survey (MBI-HSS) questionnaire. Statistical analyses included descriptive statistics, univariate and multivariate analyses, and incorporation of previously defined burnout profiles.\u0000 \u0000 \u0000 \u0000 Data were analyzed for 173 participants self-identified as YI. Measures of burnout showed that YI members scored higher on emotional exhaustion and depersonalization compared to normative population but similar to those in a prior SNO general membership survey. With respect to burnout profiles, 30% of YI respondents classified as overextended and 15% as burnout. Organizational challenges were the most common contributors to stress.\u0000 \u0000 \u0000 \u0000 Similar to results from a previous survey completed by general SNO membership, the prevalence of burnout among neuro-oncology clinical and research YIs is high, and is mainly characterized by overextension, warranting interventions at institutional and organizational levels.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"14 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140245328","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Experience of Caregiving for Adults with Benign Brain Tumors: An Integrative Review","authors":"Amanda Kate McDaniel, Barbara Carlson, Ian F Dunn, Ryann Nipp","doi":"10.1093/nop/npae021","DOIUrl":"https://doi.org/10.1093/nop/npae021","url":null,"abstract":"\u0000 \u0000 \u0000 Caregiving for the adult benign brain tumor (aBBT) population is unique, as patients’ extended period of survivorship poses significant challenges related to the long-term sequelae of disease and the foreboding possibility of recurrence. In this integrative review, we examined the caregiving experience across the spectrum of the aBBT population.\u0000 \u0000 \u0000 \u0000 We searched OVID, CINAHL, and PubMed databases from 2000 to 2022. We included studies primarily focused on caregivers of aBBT and written in English.\u0000 \u0000 \u0000 \u0000 Among 594 papers identified on initial review, we included a final list of 7 papers. Among these 7 papers, five central themes emerged. First, we identified a theme surrounding psychosocial and emotional needs, which included the social isolation of caregiving. The second theme related to informational care needs, including what is considered to be the normal course of recovery after surgery. The third theme focused on access to services, including specialist neurosurgical care, and the fourth theme related to financial strain and the economic burdens associated with long-term follow-up. Lastly, we found a theme surrounding family role changes, which included the shift from spouse to caregiver.\u0000 \u0000 \u0000 \u0000 In this review, we identified themes highlighting similarities to the high-grade glioma population. However, we uncovered distinct differences in terms of caregiver characteristics, length of survivorship and the burden of caregiving over time. Collectively, our findings underscore the incomplete understanding of the caregiving experience across the spectrum of the aBBT population.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"20 18","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140248319","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Baseline Total Brain Volume predicts for changes in quality of life and overall survival after cranial radiotherapy in older patients with a Glioblastoma (GBM). Results from the prospective BRITER study","authors":"C. Lorimer, S. Mills, A. Chalmers, I. Coombes, G. Thompson, J. Glendenning, M. Radon, C. Jones, J. Brock, A. Williamson","doi":"10.1093/nop/npae019","DOIUrl":"https://doi.org/10.1093/nop/npae019","url":null,"abstract":"\u0000 \u0000 \u0000 Short-course partial brain radiotherapy +/- chemotherapy for older patients with GBM extends survival but there is no validated evidence for prediction of individual risk of acute radiotherapy related side effects.\u0000 \u0000 \u0000 \u0000 This prospective multicentre observational trial recruited patients with newly diagnosed GBM aged ≥ 65 planned for cranial radiotherapy. Baseline MRI scans were analysed for markers of brain resilience including relative total brain volume (ratio of cerebrospinal fluid (CSF) volume to total intracranial volume (TIV)) and their relationship to change in quality of life (QoL).\u0000 \u0000 \u0000 \u0000 126 patients enrolled: mean age 72 years (range 65-83). 77% had debulking surgery. 79% received radiotherapy with concurrent TMZ, 21% received palliative radiotherapy alone. Median OS was 10.7 months. After accounting for age, sex, treatment and baseline MoCA score, there was a relationship between baseline CSF:TIV and change in QoL score at 8 weeks post treatment. For each unit point of increase in CSF:TIV, there was a corresponding decrease in QoL score of 1.72 (95% CI -3.24 to -0.19 p=0.027). 35 participants were too unwell to complete questionnaires or had died by the 8 week follow up visit. In this subgroup, post hoc logistic regression showed baseline CSF:TIV was related to risk of non-attendance (OR 1.35, 95% CI 1.01 to 1.80, p=0.042). Cox regression models showed baseline CSF:TIV was associated with worsened OS (HR 1.41, 95% CI 1.19 to 1.66, p<0.001).\u0000 \u0000 \u0000 \u0000 This study provides evidence to support the use of an imaging biomarker to help assess the risk:benefit ratio for radiotherapy.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"151 2","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140256618","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patterns of care and survival in patients with multifocal glioblastoma: a Danish cohort study","authors":"A. Trip, R. Hedegaard Dahlrot, Charlotte Aaquist Haslund, A. Muhic, Anders Rosendal Korshøj, René Johannes Laursen, F. Rom Poulsen, J. Skjøth-Rasmussen, S. Lukacova","doi":"10.1093/nop/npae020","DOIUrl":"https://doi.org/10.1093/nop/npae020","url":null,"abstract":"\u0000 \u0000 \u0000 This Danish cohort study aims to (1) compare patterns of care (POC) and survival of patients with multifocal glioblastoma (mGBM) to those with unifocal glioblastoma (uGBM), and (2) explore the association of patient-related factors with treatment assignment and prognosis, respectively, in the subgroup of mGBM patients.\u0000 \u0000 \u0000 \u0000 Data on all adults with newly diagnosed, pathology-confirmed GBM between 2015-2019 was extracted from the Danish Neuro-Oncology Registry. To compare POC and survival of mGBM to uGBM, we applied multivariable logistic and Cox regression analysis, respectively. To analyze the association of patient-related factors with treatment assignment and prognosis, we established multivariable logistic and Cox regression models, respectively.\u0000 \u0000 \u0000 \u0000 In this cohort of 1343 patients, 231 had mGBM. Of those, 42% underwent tumor resection and 41% were assigned to long-course chemoradiotherapy. Compared to uGBM, mGBM patients less often underwent a partial (OR 0.4, 95%CI 0.2-0.6), near total (OR 0.1, 95%CI 0.07-0.2), and complete resection (OR 0.1, 95%CI 0.07-0.2) vs biopsy. mGBM patients were furthermore less often assigned to long-course chemoradiotherapy (OR 0.6, 95%CI 0.4-0.97). Median overall survival was 7.0 (95% CI 5.7-8.3) months for mGBM patients, and multifocality was an independent poor prognostic factor for survival (HR 1.3, 95%CI 1.1-1.5). In mGBM patients, initial performance, O[6]-methylguanine-DNA methyltransferase (MGMT) promotor methylation status, and extent of resection were significantly associated with survival.\u0000 \u0000 \u0000 \u0000 Patients with mGBM were treated with an overall less intensive approach. Multifocality was a poor prognostic factor for survival with a moderate effect. Prognostic factors for patients with mGBM were identified.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"47 4","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-03-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140255840","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"RT-PCR assay to detect FGFR3::TACC3 fusions in formalin-fixed, paraffin-embedded glioblastoma samples","authors":"L. P. Priesterbach-Ackley, Joyce van Kuik, B. Tops, A. Lasorella, A. Iavarone, Wim van Hecke, Pierre A. Robe, Pieter Wesseling, Wendy W J de Leng","doi":"10.1093/nop/npad081","DOIUrl":"https://doi.org/10.1093/nop/npad081","url":null,"abstract":"\u0000 \u0000 \u0000 One targeted treatment option for IDH-wildtype glioblastoma focuses on tumors with FGFR3::TACC3 fusions. FGFR3::TACC3 fusion detection can be challenging, as targeted RNA next generation sequencing is not routinely performed and immunohistochemistry is an imperfect surrogate marker. Fusion status can be determined using RT-PCR on fresh frozen (FF) material, but sometimes only formalin-fixed, paraffin embedded (FFPE) tissue is available.\u0000 \u0000 \u0000 \u0000 To develop an RT-PCR assay to determine FGFR3::TACC3 status in FFPE glioblastoma samples.\u0000 \u0000 \u0000 \u0000 Twelve tissue micro-arrays with 353 historical glioblastoma samples were immunohistochemically stained for FGFR3. Samples with overexpression of FGFR3 (n=13) were subjected to FGFR3::TACC3 RT-PCR on FFPE, using 5 primer sets for detection of 5 common fusion variants. Fusion negative samples were additionally analyzed with NGS (n=6), FGFR3 FISH (n=6) and RNA sequencing (n=5).\u0000 \u0000 \u0000 \u0000 Using RT-PCR on FFPE material of the 13 samples with FGFR3 overexpression, we detected an FGFR3::TACC3 fusion in 7 samples, covering 3 different fusion variants. For 5 of these FF was available, and the presence of the fusion was confirmed through RT-PCR on FF. With RNA-sequencing one additional sample was found to harbor a FGFR3::TACC3 fusion (variant not covered by current RT-PCR for FFPE). The frequency of FGFR3::TACC3 fusion in this cohort was 9/353 (2,5%).\u0000 \u0000 \u0000 \u0000 RT-PCR for FGFR3::TACC3 fusions can successfully be performed on FFPE material, with a specificity of 100% and (due to limited primer sets) a sensitivity of 83,3%. This assay allows for the identification of potential targeted treatment options when only formalin-fixed tissue is available.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"49 24","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-01-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139382302","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The development and validation of a needs assessment tool for use with young adult survivors of a central nervous system tumour (YOU-CAN)","authors":"Kate Law, Martin G McCabe, Sabine N van der Veer, Janelle Yorke","doi":"10.1093/nop/npad082","DOIUrl":"https://doi.org/10.1093/nop/npad082","url":null,"abstract":"\u0000 \u0000 \u0000 Adolescent and young adult (AYA) survivors of a central nervous system (CNS) tumour represent a vulnerable group who can experience: social isolation, low rates of employment and achieving independence can be compromised, leading to poorer quality of life compared with survivors of other cancer types. The aim of this study is to develop and evaluate the validity of a needs assessment tool (NAT) for AYA survivors of a CNS tumour.\u0000 \u0000 \u0000 \u0000 Items generated using data from 29 qualitative studies and cognitive interviews (n=8) produced NAT V1.1 (49-items). 128 of 316 eligible participants attending neuro-oncology clinics at four NHS sites between June 2022-March 2023 completed the NAT V1.1 to allow for item reduction and refinement and to evaluate reliability and validity. Pilot study (n=6) using YOU-CAN in routine follow-up concluded the study.\u0000 \u0000 \u0000 \u0000 Hierarchical analysis and Rasch analysis identified 18- and 15-items for removal, respectively. YOU-CAN, comprised of the remaining 16-items, demonstrates excellent test-retest reliability (intra-class correlation coefficient, 0.901, n=40) and sufficient correlation with European Quality of Life questionnaire and Supportive Care Needs Survey (Pearson r=0.433 and 0.590 respectively). Pilot-testing showed YOU-CAN triggered discussions of unmet needs in consultations and highlighted the importance of multi-disciplinary support.\u0000 \u0000 \u0000 \u0000 YOU-CAN is a valid and reliable instrument containing items related to concerns about physical and emotional health; family and relationships; self-acceptance; independence. Future efforts should examine YOU-CAN’s feasibility, and develop guidance for managing unmet needs. Routine use of YOU-CAN may improve identification of otherwise undiscussed unmet needs and opportunities to deliver personalised support.\u0000","PeriodicalId":506567,"journal":{"name":"Neuro-Oncology Practice","volume":"57 3","pages":""},"PeriodicalIF":0.0,"publicationDate":"2024-01-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139383543","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}