Abstract:
:Health-related quality of life (HRQOL) is arguably one of the most important measures in evaluating effectiveness of clinical treatments. At present, there is no disease-specific outcome measure to assess the HRQOL of children, adolescents and young adults with Neurofibromatosis Type 1 (NF1). This study aimed to develop the items and support the content validity for the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 Module for children, adolescents and young adults. The iterative process included multiphase qualitative methods including a literature review, survey of expert opinions, semi-structured interviews, cognitive interviews and pilot testing. Fifteen domains were derived from the qualitative methods, with content saturation achieved, resulting in 115 items. The domains include skin, pain, pain impact, pain management, cognitive functioning, speech, fine motor, balance, vision, perceived physical appearance, communication, worry, treatment, medicines and gastrointestinal symptoms. This study is limited because all participants are recruited from a single-site. Qualitative methods support the content validity for the PedsQL™ NF1 Module for children, adolescents and young adults. The PedsQL™ NF1 Module is now undergoing national multisite field testing for the psychometric validation of the instrument development.
journal_name
J Neurooncoljournal_title
Journal of neuro-oncologyauthors
Nutakki K,Varni JW,Steinbrenner S,Draucker CB,Swigonski NLdoi
10.1007/s11060-016-2351-2subject
Has Abstractpub_date
2017-03-01 00:00:00pages
135-143issue
1eissn
0167-594Xissn
1573-7373pii
10.1007/s11060-016-2351-2journal_volume
132pub_type
杂志文章abstract::Primary malignant brain and other central nervous system tumors (BT) are a rare cancer that causes morbidity and mortality disproportionate to their incidence. This study presents the most up-to-date mortality data for malignant BT in the United States (US) by histology groupings, age, race, and sex. Mortality rates f...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-017-2449-1
更新日期:2017-06-01 00:00:00
abstract::Several molecular markers have been proposed as predictors of outcome in patients with high grade gliomas. We report a retrospective multicenter study of 97 consecutive adult patients with anaplastic astrocytoma (AA) treated with radiation therapy (RT) plus concomitant and adjuvant temozolomide (TMZ) between October 2...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,多中心研究
doi:10.1007/s11060-014-1443-0
更新日期:2014-06-01 00:00:00
abstract::Glioblastoma multiforme (GBM) represents a class of malignant gliomas which rapidly proliferate, invade and destroy surrounding brain tissues. This study examined micro-RNA (miRNA) speciation and miRNA effects on gene expression in six ATCC glioma and GBM cell lines and in 14 glioma and GBM samples obtained from human...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-008-9688-0
更新日期:2009-01-01 00:00:00
abstract::Human melanoma proteoglycan (HMP), a melanoma-associated antigen, is expressed in both human melanomas and gliomas. We used HMP-specific monoclonal antibody (mAb) VT68.2 to investigate whether murine GL261 cerebral gliomas express the HMP homologue AN2 and to determine whether AN2 could be targeted for selective deliv...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-009-9798-3
更新日期:2009-08-01 00:00:00
abstract:BACKGROUND:Based on limited literature, an at risk group of patients for development of neoplastic meningitis (NM) are those with resected cerebellar parenchymal metastases. OBJECTIVE:Characterize the incidence of NM in patients with cerebellar metastases treated with either surgical resection or radiotherapy. PATIEN...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-008-9594-5
更新日期:2008-08-01 00:00:00
abstract::We report a 13-month-old boy with diencephalic syndrome (DS) due to an optico-hypothalamic juvenile pilocytic astrocytoma (JPA). Massive neuroaxis dissemination was identified at diagnosis. He received 6 courses of combined conventional-dose chemotherapy consisting of carboplatin (CBDCA), etoposide (VP-16), and cyclop...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1023/a:1023363122666
更新日期:2003-05-01 00:00:00
abstract::Tanshinone IIA is a derivative of phenanthrene-quinone isolated from Danshen, a widely used Chinese herbal medicine. It has antioxidant properties, cytotoxic activities against multiple human cancer cells, inducing apoptosis and differentiation of some human cancer cells. The purpose of this study is to confirm its an...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-006-9242-x
更新日期:2007-03-01 00:00:00
abstract::Treatment for anaplastic astrocytoma (AA) is controversial. To assess three primary treatment approaches, patients from a single institution were retrospectively evaluated. To represent modern treatment selection, patients diagnosed with AA from December 2003 to December 2009 were selected. Those with insufficient dat...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-013-1116-4
更新日期:2013-06-01 00:00:00
abstract:PURPOSE:White matter changes (WMCs) can develop following systemic chemotherapy in patients with primary central nervous system lymphomas (PCNSLs), but the frequency and extent of these changes is not well characterized. This single center retrospective semi-quantitative study was performed to determine the rate, timin...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-019-03279-9
更新日期:2019-12-01 00:00:00
abstract::We report the case of a 58 year old woman with an epidermoid cyst of the right cerebello-pontine angle that was subtotally excised. She recurred 2 years later and received radiotherapy with resolution of symptoms and shrinkage of the cyst. The natural history of epidermoid cysts and the role of radiotherapy in their m...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/BF01052846
更新日期:1995-01-01 00:00:00
abstract::Pediatric brain gliomas are not always amenable for complete surgical excision, therefore adjuvant treatment for a large tumor mass is often required. As tumor volume shrinkage may not be a reliable method for assessing response to treatment, information about the tumor growth potential is desirable for an adequate fo...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1023/a:1006120623949
更新日期:1999-02-01 00:00:00
abstract::The effect of recombinant human interleukin 1 beta (rHuIL-1 beta) on myelosuppression induced by 3-[(4-amino-2-methyl-5-pyrimidynyl)methyl]-1-(2-chloroethyl)-1-nit rosourea hydrochloride (ACNU) was studied. In in vivo study using BALB/c mice, pretreatment with 1 microgram/mouse of rHuIL-1 beta as a single intraperiton...
journal_title:Journal of neuro-oncology
pub_type: 临床试验,杂志文章
doi:10.1007/BF00177620
更新日期:1992-10-01 00:00:00
abstract::Steroids are beneficial in neurological illness, but have many serious side effects. Having observed several patients with severe steroid psychoses, which greatly prolonged their hospitalizations, the authors sought to improve understanding of this entity. A literature review was conducted. The incidence of severe psy...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,评审
doi:10.1007/s11060-012-0919-z
更新日期:2012-09-01 00:00:00
abstract::Diffuse intrinsic pontine glioma (DIPG), a rare, often fatal childhood brain tumor, remains a major therapeutic challenge. In 2012, investigators, funded by the DIPG Collaborative (a philanthropic partnership among 29 private foundations), launched the International DIPG Registry (IDIPGR) to advance understanding of D...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-017-2372-5
更新日期:2017-04-01 00:00:00
abstract::The aim of this work is to evaluate patterns of failure in patients with recurrent meningioma after stereotactic radiotherapy. Of 411 patients with intracranial meningioma treated with radiotherapy at our institution, 22 patients with local tumor progression diagnosed by magnetic resonance imaging (MRI) after radiothe...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-009-0084-1
更新日期:2010-07-01 00:00:00
abstract::We proposed to identify the efficacy of an epidermal growth factor receptor (EGFR) tyrosine kinase inhibitor (TKI) using whole brain radiotherapy (WBRT)/stereotactic radiosurgery (SRS)/surgery in brain metastases from patients with non-small cell lung cancer (NSCLC) and clarify the association between treatment outcom...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-014-1570-7
更新日期:2014-11-01 00:00:00
abstract::This study aimed to explore the safety and efficacy of multisession gamma knife surgery (GKS) for large brain metastases with a volume of 10 cm3 or larger. Fifty-six patients who had 65 brain metastases with a volume of at least 10 cm3 were treated with multisession GKS. Three-session GKS at a prescription dose of 10 ...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-016-2317-4
更新日期:2017-02-01 00:00:00
abstract::One objection to using cell cultures for studying the proliferation of tumors is the potential for phenotypic changes that may occur in vitro. Here, we compared the antigen pattern expression of cultured meningioma cells with that of the primary tumor. Cell cultures established from 9 intracranial meningiomas and depa...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1023/a:1006436903976
更新日期:2000-08-01 00:00:00
abstract::Central nervous system atypical teratoid/rhabdoid tumor (ATT/RT) of infancy and childhood is a unique histologic entity with an extremely aggressive natural history. Standard therapy for infant and childhood medulloblastoma, for which this entity is often mistaken, has been ineffective; most children survive less than...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,评审
doi:10.1023/a:1006125120866
更新日期:1998-12-01 00:00:00
abstract::We conducted a phase II study to test methotrexate (5 g/m(2)), as a single agent prior to radiochemotherapy for pediatric high-grade glioma and diffuse intrinsic pontine glioma. Thirty patients (19 male, median age 10.8) were enrolled. Tumors were located as follows: cortex 10, pons 7, other 13. Tumor resection was cl...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,多中心研究
doi:10.1007/s11060-010-0334-2
更新日期:2011-05-01 00:00:00
abstract::Boron neutron capture therapy (BNCT) is an experimental form of radiation therapy for malignant brain tumors and peripheral melanoma. The micro-distribution of the boron compound is critical to determine the radiation effects for both tumors and normal tissue. In the current dose calculation of BNCT, normal brain tiss...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-007-9494-0
更新日期:2008-03-01 00:00:00
abstract::We have developed an in vitro assay for Natural Killer (NK) cell cytolysis of and binding to substrate attached human glioma and fetal brain cells. The monolayer cells were labeled with [51Cr] and the effectors were directly sedimented onto these substrate attached target cells. Using this method we screened several g...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/BF00165099
更新日期:1989-07-01 00:00:00
abstract::Gliomas, the most common malignant primary brain tumors, are universally fatal once they progress from low-grade into high-grade neoplasms. In recent years, we have accumulated unprecedented data about the genetic and epigenetic abnormalities in gliomas; yet, our appreciation of how these deadly tumors arise is still ...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,评审
doi:10.1007/s11060-014-1499-x
更新日期:2014-09-01 00:00:00
abstract::Aberrant expression of stem cell-related genes in tumors may confer more primitive and aggressive traits affecting clinical outcome. Here, we investigated expression and prognostic value of the neural stem cell marker CD133, as well as of the pluripotency genes LIN28 and OCT4 in 37 samples of pediatric medulloblastoma...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-011-0647-9
更新日期:2012-01-01 00:00:00
abstract::The Hedgehog (Hh) signaling pathway has been implicated in the most common childhood brain tumor, medulloblastoma (MB). Given the toxicity of post-surgical treatments for MB, continued need exists for new, targeted therapies. Based upon our finding that Neuropilin (Nrp) transmembrane proteins are required for Hh signa...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-013-1216-1
更新日期:2013-11-01 00:00:00
abstract:PURPOSE:Preclinical studies have suggested promising activity for the combination of disulfiram and copper (DSF/Cu) against glioblastoma (GBM) including re-sensitization to temozolomide (TMZ). A previous phase I study demonstrated the safety of combining DSF/Cu with adjuvant TMZ for newly diagnosed GBM. This phase II s...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,多中心研究
doi:10.1007/s11060-019-03125-y
更新日期:2019-05-01 00:00:00
abstract:OBJECT:Prophylactic cranial irradiation (PCI) is commonly offered to patients with limited stage primary small cell lung cancer following a complete response. METHODS:We present the unique case of a 76-year-old woman treated with PCI with a dose of 30 Gy in 15 fractions, at 200 cGy per fraction who developed progressi...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-007-9384-5
更新日期:2007-10-01 00:00:00
abstract::Injection of dendritic cells (DC) pulsed with tumor antigens is a novel treatment strategy against malignancies, and aims to elicit anti-tumoral cell-mediated immune responses. We studied the in vitro proliferative responses and cytokine production in T cell cultures after 2 stimulations with autologous DC loaded with...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1007/s11060-007-9362-y
更新日期:2007-09-01 00:00:00
abstract::Meningiomas that progress after standard therapies are challenging with limited effective chemotherapy options. This phase II trial evaluated the efficacy of everolimus plus bevacizumab in patients with recurrent, progressive meningioma after treatment with surgical resection and local radiotherapy when appropriate. P...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章,多中心研究,随机对照试验
doi:10.1007/s11060-016-2172-3
更新日期:2016-09-01 00:00:00
abstract:BACKGROUND AND OBJECTIVES:The postoperative cerebellar mutism syndrome (CMS) is an unique acute postoperative complication characterized by transient decrease in speech output (often mutism), apathy, irritability as well as global cerebellar dysfunction. As much as 25% of patients undergoing a resection of a cerebellar...
journal_title:Journal of neuro-oncology
pub_type: 杂志文章
doi:10.1023/a:1006483531811
更新日期:2000-05-01 00:00:00