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Op een serene wijze vertellen vrijwilligers in palliatieve zorg hun ervaringen. Ontroerende verhalen die begeleid worden door mooie foto's.

Sociology of social care --- Philosophical anthropology --- Hygiene. Public health. Protection --- Flanders --- Dood --- Ethique philosophique --- Mort --- Wijsgerige ethiek --- 253:362 --- 364.44 --- 364.4-053.18 --- 614.256.3 --- C5 --- vrijwilligerswerk --- palliatieve zorg --- Martens, Wilfried (1936-) --- Demeester-De Meyer, Wivina (1943-) --- dood --- 603.2 --- christelijke zingeving --- palliatieve zorgen --- stervensbegeleiding --- zingeving --- Pastoraal voor gehandicapten --- Maatschappelijke organisaties en maatschappelijk leven --- 253:362 Pastoraal voor gehandicapten --- #gsdb6 --- vrijwilligers --- getuigenissen --- soins palliatifs --- accompagnement de personnes proches de la mort --- volontaires --- témoignages

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Introduction Diffuse intrinsic pontine glioma is a rare disease with a high mortality. Our primary aim was to determine the incidence of this disease in Belgium. Secondly, we wanted to compare the treatment approach of Belgian pediatric oncology centres, to investigate possibilities for improvement. Methods We retrospectively collected and analysed data on DIPG-patients diagnosed between 1994 and 2018 and recorded in the Belgian Cancer Registry. We included patients ≤18 years who were followed in one of the eight Belgian pediatric oncology centres. Results We included 100 patients. Files were complete in 87 patients. We observed an increase in diagnoses with an incidence of 3.1 per 1,000,000 persons (aged 0-≤18) per year over the last 5 years compared to an overall incidence of 1.8. Biopsy was performed at diagnosis in 51.7% of patients. In one fifth this was study-related. Mutation analysis was known in eight patients, of which six showed the H3 K27Mmutation. 58.8% of patients received chemotherapy, without a significant survival benefit. 12.6% of patients were included in a clinical trial. Biopsy rate and the use of chemotherapy differed widely between centres. Mean OS and PFS were 10.49 and 4.87 months respectively. We observed an improved survival over time. Conclusions Over the past 25 years, we observed an increase of new DIPG-diagnoses. Outcome in our cohort is comparable with literature findings. We demonstrate an important heterogeneity in treatment approach between different centres and limited inclusion in clinical trials. Therefore, collaboration between centres and inclusion of patients in clinical trials is much needed.

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Background: Up to now various treatment strategies have been proposed to treat pseudoprogression upon proton therapy for paediatric primary brain tumours, but to this day no evidence-based guidelines are available. Objective: Describing the concept of pseudoprogression within the context of proton therapy for primary paediatric brain tumours, focussing on possible treatment options with the aim of proposing a standardised treatment strategy. Methods: We conducted a systematic literature search in Embase, PubMed, CENTRAL Cochrane and Web of Science Core collection from September 2022 to January 2023. We identified 4997 articles. After deduplication 3172 articles remained of which 30 articles were included. Results: We discussed the available evidence regarding terminology of pseudoprogression vs. radiation necrosis and the pathophysiology, clinical presentation and risk factors of pseudoprogression. We also discussed the evidence on treatment strategies for pseudoprogression, which is limited and mainly existing of case series, retrospective cohorts and few to no randomised controlled trials. Conclusion: With the available evidence we suggest a combination of Dexamethasone dosed at 0.2 mg/kg daily (maximum dose of 3mg daily) tapered over 6 weeks with 4 courses of Bevacizumab dosed at 7.5 mg/kg daily, with an interval of 2 weeks in between administrations as a standardised treatment. We also suggest to only start treatment in patients with symptomatic pseudoprogression, not those presenting only with imaging changes. We also hope to stimulate further research with larger randomised controlled trials comparing treatment strategies to help construct future guidelines.

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Medulloblastoma is a malign posterior fossa brain tumor, mostly occurring during childhood. Improving survival rates have caused functional outcome of medulloblastoma patients to gain in importance. The therapy these children receive can be harmful to their developing brains. This review summarizes the relevant literature on associations between neuroimaging and neurocognitive changes in patients that were treated for pediatric medulloblastoma. This is useful (1) to identify underlying neuroanatomical processes that explain neurocognitive changes caused by medulloblastoma treatment, (2) to work towards the use of neuroimaging to estimate cognitive outcome of medulloblastoma patients and (3) to explore possible points of intervention that improve cognitive functioning. We searched the PubMed/Medline database with search terms belonging to three categories: medulloblastoma, neurocognition and imaging. After selection and manual reference tracking, we included 20 articles that fitted the aim of our review. White matter macro- and microstructure disruption, investigated by anatomical and diffusion-weighted magnetic resonance imaging, plays a crucial role in the development of cognitive deficits in childhood medulloblastoma survivors. This supports the earlier published neurodevelopmental model by Wolfe that states that changing white matter is the neuroanatomical mechanism by which brain cancer treatment causes cognitive damage in the developing child. Also, diffusion-weighted imaging is potentially useful to predict processing speed and other cognitive outcomes. This can help in personalizing therapy to improve neurocognition of childhood medulloblastoma survivors. In the future, large prospective studies, using diffusion-weighted imaging, should be performed to further investigate possible neuroimaging parameters with predictive value and intervention opportunities in pediatric medulloblastoma patients.