Publications by authors named "Helen J Bulbeck"
Adult brain tumour research in 2024: Status, challenges and recommendations.
Neuropathol Appl Neurobiol
April 2024
Article Synopsis
- In 2015, patient and charity activism led to the formation of a UK government group focused on brain tumor research.
- By 2018, this resulted in a commitment of £20m from the government and £25m from Cancer Research UK for neuro-oncology over five years.
- The review covers changes in the UK's brain tumor research landscape, identifies seven key research priorities, three overarching themes, and discusses the current status and challenges in this field.
Background: Glioma patients may experience behavioral and personality changes (BPC), negatively impacting their lives and that of their relatives. However, there is no clear definition of BPC for adult glioma patients, and here we aimed to determine which characteristics of BPC are relevant to include in this definition.
Methods: Possible characteristics of BPC were identified in the literature and presented to patients and (former) caregivers in an online survey launched via the International Brain Tumour Alliance.
Article Synopsis
- Brain tumor patients often struggle with impaired medical decision-making capacity (MDC), complicating their ability to give informed consent for treatments or research participation.
- The European Association of Neuro-Oncology conducted a systematic review to gather evidence on MDC assessment tools and interventions to help manage reduced capacity in these patients.
- The study found that cognitive impairment significantly affects MDC, emphasizing the importance of using structured assessment tools and considering surrogate decision-making to protect patient interests when necessary.*
Patients with glioma present with complex palliative care needs throughout their disease trajectory. The life-limiting nature of gliomas and the presence of specific symptoms related to neurological deterioration necessitate an appropriate and early palliative care approach. The multidisciplinary palliative care task force of the European Association of Neuro-Oncology did a systematic review of the available scientific literature to formulate the best possible evidence-based recommendations for the palliative care of adult patients with glioma, with the aim to reduce symptom burden and improve the quality of life of patients and their caregivers, particularly in the end-of-life phase.
View Article and Find Full Text PDFNeurocognitive Deficits and Neurocognitive Rehabilitation in Adult Brain Tumors.
Curr Treat Options Neurol
May 2016
Article Synopsis
- Neurocognitive deficits frequently occur in brain tumor patients, with detailed assessments revealing problems in about 80% of cases due to various factors like the tumor itself, treatments, and psychological issues.
- Early post-operative neurocognitive rehabilitation can significantly improve quality of life and cognitive functions, although more research is needed on the long-term benefits and effect size compared to other conditions like stroke or head injuries.
- A multidisciplinary approach is crucial for effective neurocognitive rehabilitation, which should begin early in the treatment process rather than as a separate phase, ensuring comprehensive support for recovery.