scholarly journals Exploring the lived experience of a high grade glioma

2019 ◽  
Vol 21 (Supplement_4) ◽  
pp. iv14-iv14
Author(s):  
Shivani Soni ◽  
Matthew Williamas ◽  
Antonia Lannie

Abstract Introduction Brain tumour patients face a variety of challenges during diagnosis and treatment. Although most treating clinicians are familiar with these, it can be difficult to obtain a comprehensive overview of which are the most common problems, which patients they affect and how to address them. Methods We conducted a systematic review of all work relating to the lived experience of patients and carers of a glioblastoma. We identified articles published between 2008 and 2018 these had to be published in English, using the search terms cares and patients, lived experience, glioblastoma and perspective with relative alternative terms. We excluded articles that were previous systematic reviews, included low grade/brain metastasis from another primary site and articles that combined results for patients and carers. We extracted key theme and concerns, and summarised and tabulated and developed a discussion/recommendation. Results We identified 405 potential studies. We rejected 374 after screening abstract and titles, and a further 23 on further review. This left a set of 8 unique publications. The 8 publications included were comprised of qualitative studies that explored patient and carers experience at different points in the patient pathway. The main concerns/themes identified were issues around communication specifically the shock of diagnosis, re-negotiating relationships and finally accessing support. Conclusions This is the first systematic review that collates the lived experience of patients with high grade gliomas. It differs from the palliative care literature and from the James Lind Alliance, and is more specific than generic health needs assessments that are being used in practice.

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi246-vi246
Author(s):  
Ahmad Almekkawi ◽  
Tarek El Ahmadieh ◽  
Karl Abi-Aad ◽  
Salah Aoun ◽  
Najib EL Tecle ◽  
...  

Abstract BACKGROUND 5-aminolevulinic acid is a reliable tool for optimizing high-grade glioma resection. However, its efficacy in low-grade glioma resection remains unclear. OBJECTIVE To study the role of 5-aminolevulinic acid in low-grade glioma resection and assess positive fluorescence rates and effect on the extent of resection. METHODS A systematic review of PubMed, Google Scholar, and Cochrane was performed from the date of inception to February 1, 2019. Studies that correlated 5-aminolevulinic acid fluorescence with low-grade glioma in the setting of operative resection were selected. Studies with biopsy only were excluded. Positive fluorescence rates were calculated. Quality index of the selected papers using the Downs and Black criteria checklist was provided. RESULTS Twelve articles met the selection criteria with 244 histologically-confirmed low-grade glioma patients who underwent microsurgical resection. All patients received 20 mg/kg body weight of 5-aminolevulinic acid. Only 60 patients (n=60/244; 24.5%) demonstrated visual intra-operative 5-aminolevulinic acid fluorescence. The extent of resection was reported in 4 studies, however, the data combined low- and high-grade tumors. Only 2 studies reported on tumor location. Only 3 studies reported on clinical outcomes. The Zeiss OPMI Pentero microscope was most commonly used across all studies. The average quality index was 14.58 (range: 10–17) which correlated with an overall good quality. CONCLUSION There is an overall low correlation between 5-aminolevulinic acid fluorescence and low-grade glioma. Advances in visualization technology and using standardized fluorescence quantification methods may further improve the visualization and reliability of 5-aminolevulinic acid fluorescence in low-grade glioma resection.


Author(s):  
Kendall L Hughes ◽  
Christen M O’Neal ◽  
Bethany J Andrews ◽  
Alison M Westrup ◽  
James D Battiste ◽  
...  

Abstract Currently, bevacizumab (BEV), an antiangiogenic agent, is used as an adjunctive therapy to re-irradiation and surgery in patients with recurrent high-grade gliomas (rHGG). BEV has shown to decrease enhancement on MRI, but it is often unclear if these changes are due to tumor response to BEV or treatment-induced changes in the blood brain barrier. Preliminary studies show that amino acid PET can aid in distinguishing these changes on MRI.The authors performed a systematic review of PubMed and Embase through July 2020 with the search terms ‘bevacizumab’ or ‘Avastin’ and ‘recurrent glioma’ and ‘PET,’ yielding 38 papers, with 14 meeting inclusion criteria. Thirteen out of fourteen studies included in this review used static PET and three studies used dynamic PET to evaluate the use of BEV in rHGG. Six studies used the amino acid tracer [ 18F]FET, four studies used [ 11C]MET, and four studies used [ 18F]FDOPA. [ 18F]FET, [ 11C]MET, and [ 18F]FDOPA PET in combination with MRI have shown promising results for improving accuracy in diagnosing tumor recurrence, detecting early treatment failure, and distinguishing between tumor progression and treatment-induced changes in patients with rHGG treated with BEV.


2019 ◽  
Vol 21 (Supplement_4) ◽  
pp. iv14-iv14
Author(s):  
Ian Yao ◽  
Sarah Dawson ◽  
Julian Higgins ◽  
Luke McGuinness ◽  
Alexandra McAleenan ◽  
...  

Abstract Background BRAF inhibitor treatment with vemurafenib and dabrafenib have produced significant increases in median overall survival for BRAF V600 mutation-positive melanoma patients and are in wide clinical use. BRAF inhibitors have also been used in an ad hoc fashion in BRAF V600 mutation-positive glioma in a number of glioma subtypes with varying prognoses. Methods An electronic search was performed on MEDLINE and Embase on February 1, 2019 to identify studies of any design that reported the outcome of patients with BRAF V600 mutation-positive glioma treated with BRAF inhibitors. Data was collected for demographic information, tumour information (type and grading), BRAF mutation type, prior treatment regimens, type of BRAF inhibitor, dose and duration of treatment, best objective response, progression free survival (PFS), overall survival (OS), glioma specific symptomatic relief and adverse events. Preliminary Results Seventy-nine case reports, case series and single arm cohort studies with a total of 286 patients were included. Duration of treatment was available for 197 patients and varied from 0.1 to 54 months, with 104 patients still undergoing treatment at the time of publication. Progression occurred in 158 patients (including both low-grade and high-grade glioma) at between 0.805 and 36 months following the start of treatment. 34 people died, at between 0.329 and 40.1 months following the start of treatment. Conclusions Our systematic review shows varying clinical effectiveness of BRAF inhibitors in BRAF V600 mutation-positive glioma depending on low-grade or high-grade glioma. This evidence may inform future trials of BRAF inhibitors for glioma patients.


2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii346-iii346
Author(s):  
Tamaki Morisako ◽  
Daisuke Umebayashi ◽  
Kazuaki Kamata ◽  
Hiroyuki Yamamoto ◽  
Takumi Yamanaka ◽  
...  

Abstract INTRODUCTION Tumors arising from the spinal cord are uncommon, especially high-grade tumors in pediatric patients. We report a case of high-grade glioma in the spinal cord harboring NTRK1 gene fusion, who received effective entrectinib therapy. CASE REPORT: A 5-year-old boy presented right hemiparesis and MR imaging revealed an intramedullary enhancing mass at the vertebral body level between C3 and Th1. He underwent microsurgical partial resection and the histological diagnosis was low-grade astrocytoma. After the first-line chemotherapy with vincristine and carboplatin, his right hemiparesis deteriorated and recurrent MR imaging showed growth of the tumor. He underwent microsurgical partial resection again and the histological examination was high-grade glioma with endothelial proliferation and necrosis. The chemoradiotherapy with temozolomide and focal irradiation of 50.4 Gy were given, and his neurological symptom slightly improved. One month later, he presented respiratory disturbance and required assisted ventilation with tracheostomy. MR imaging showed tumor progression invading upward to medulla oblongata. NTRK1 gene fusion was detected in the previous surgical specimen by a gene panel testing, and he received entrectinib, a potent inhibitor of tropomyosin receptor kinase (TRK). Since then, no tumor progression has been demonstrated for several months by MRI and he has been stable neurologically. CONCLUSION High-grade spinal cord tumors are rare and effective treatment strategies have not been addressed. Although the frequency of the gene fusion is very low in pediatric gliomas, identification of the driver gene aberration like in this case by a gene panel can provide potential targeted therapies for selected patients.


2021 ◽  
Vol 108 (Supplement_6) ◽  
Author(s):  
A Srivastava ◽  
P Khanal ◽  
D Zargaran ◽  
F Zoller ◽  
A Zargaran ◽  
...  

Abstract Aim Pressure ulcers (PUs) affect over 700,000 patients per annum and are associated with an up to fourfold increase in mortality rate in older populations with complex pathologies. NICE guidelines for PU management involve a combination of low-grade technological interventions, including dressings and foam mattresses, while technology-centric therapies are not offered. The aim of this systematic review is to evaluate the effectiveness of any novel and high-grade technological PU interventions. Method The PubMed, Embase (via Ovid), Web of Science and CINAHL databases were electronically searched using free-text and MeSH search strings. Results evaluating the type of technological intervention, outcome measures and wound healing rates, duration of hospital stay, requirement for surgical debridement, infection and mortality rates were methodically assessed. Results An initial search identified 900 articles. Using the PRISMA guidance, 25 studies were included, encompassing 845 patients. 28 novel modalities of high-grade innovations were identified, with distinguished technologies including smart wireless bandages and 3D-printed wound repair scaffolds. Overall, 92.8% of devices demonstrated an improvement in wound healing (P < 0.05). A novel framework was created from the different innovations identified to approach adopting innovation in PU management. Conclusions The majority of high-technology innovations identified in this systematic review significantly improve PU healing, thus offering an additional pathway to standard care. Given the annual cost of PUs (£531 million), it is vital innovative technologies are considered as the NHS transitions into a digital age. Therefore, further studies are essential and recommended to evaluate the potential benefit of the promising, innovative technologies identified.


2019 ◽  
Vol 21 (Supplement_3) ◽  
pp. iii9-iii10
Author(s):  
M C M Peeters ◽  
L Dirven ◽  
J A F Koekkoek ◽  
E G Gortmaker ◽  
L Fritz ◽  
...  

Abstract BACKGROUND Little is known about the symptoms and signs glioma patients experience in the year before diagnosis, either or not resulting in health care usage. The objective of this study was to determine the incidence of several symptoms and signs glioma patients experienced in the year prior to diagnosis, as well as visits to a general practitioner (GP) related to these issues. MATERIAL AND METHODS This was a cross-sectional study, including adults diagnosed with a glioma <12 months ago. Patients were asked to complete a 30-item study-specific questionnaire, if possible with input of a proxy, focusing on symptoms and signs they experienced in the 12 months before diagnosis. For each indicated symptom/sign, patients were asked whether they consulted the GP for this issue. In addition, the presence of comorbidity and other chronic complaints were assessed, as well as consulted health care professionals (HCPs) in the year prior to diagnosis. The statistical analyses were corrected for multiple testing. RESULTS Between July 2016 and March 2019, 58 patients completed the questionnaires, 54 (93%) with input of a proxy. Forty-one (72%) patients were men, with a median age of 60 years (range 43–78), and the median time since diagnosis was 4 months (range 1–12). Forty (69%) patients had a comorbidity or chronic complaint, and the median number of consulted HCPs was 2 (range 0–8). The median number of symptoms/signs experienced in the year before diagnosis was 8 (range 2–19) in low-grade and 5 (range 0–24) in high-grade glioma (p=0.258). The five most frequently mentioned problems were fatigue (34/58, 59%), mental tiredness (28/58, 48%), sleeping disorder (23/58, 40%), headache (22/58, 38%) and stress (20/58, 34%), with no differences between low- and high grade glioma. Twenty-five (43%) patients had visited the GP with at least one issue. We found that patients who did consult their GP reported significantly more often muscle weakness (11 vs 3, p=0.002), paralysis in for example a hand or leg (10 vs 3, p=0.006), or a change in consciousness (9 vs 3, p=0.013) compared to those that did not consult the GP. However, they did not differ with respect to the number of symptoms (median 7 vs 5), comorbidities and chronic complaints (median 1 vs 1), or overall health care usage (median 3 vs 2). CONCLUSION Glioma patients experience a range of problems in the year prior to diagnosis, but patients who consult the GP report significantly more often neurological problems.


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