Caregivers
Topics: communication, glioma, coaching, shared engagement.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2022)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Topics: brain tumour, patients, caregivers, support interventions, Cochrane review.
Interventions to help support caregivers of people with a brain or spinal cord tumour (2019)
Florien W Boele, Helen Bulbeck, Catherine Browne, Alasdair G Rooney, Paula Sherwood.
Topics: brain tumour, patients, caregivers, support interventions, Cochrane review.
Neurocognitive Deficits and Neurocognitive Rehabilitation in Adult Brain Tumors in Current Treatment Options in Neurol (2016)
Florien W Boele, Helen Bulbeck, Catherine Browne, Alasdair G Rooney, Paula Sherwood.
Cochrane reviews
Topics: communication, glioma, coaching, shared engagement.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2022)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Topics: glioblastoma, elderly, treatments, meta-analysis, Cochrane review.
Treatment of newly diagnosed glioblastoma in the elderly: a network meta‐analysis (2020)
Hanna C, Lawrie TA, Rogozińska E, Kernohan A, Jefferies S, Bulbeck H, Ali UM, Robinson T, Grant R.
Topics: brain tumour, patients, caregivers, support interventions, Cochrane review.
Interventions to help support caregivers of people with a brain or spinal cord tumour (2019)
Florien W Boele, Helen Bulbeck, Catherine Browne, Alasdair G Rooney, Paula Sherwood.
COVID 19
Topics: COVID, decision making.
Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (2020)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Decision making
Topics: Glioblastoma, communication, quality of life, qualitative study.
Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals. (2023)
Boele FW, Butler S, Nicklin E, et al.
Topics: communication, glioma, coaching, shared engagement.
Measuring what matters to the brain cancer community in ‘Effects of Cancer Treatment on the Nervous System, Volume 1’ (2022)
Bulbeck, H.
Topics: Decision making, treatment.
Determining medical decision-making capacity in brain tumor patients: why and how? (2020)
Andrea Pace, Johan A F Koekkoek, Martin J van den Bent, Helen J Bulbeck, Jane Fleming.
Topics: COVID, decision making.
Impact of COVID-19 pandemic on surgical neuro-oncology multi-disciplinary team decision making: a national survey (2020)
Andrea Pace, Johan A F Koekkoek, Martin J van den Bent, Helen J Bulbeck, Jane Fleming.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Patient and caregiver advocacy (2019)
Grisold, W. Bulbeck, H.
Topics: communication, glioma, coaching, shared engagement.
Communication skills: the patient as co-pilot in Management of adult glioma in nursing practice. (2019)
Oberg, I. et al.
Topics: tissue banking, donation, research.
UK Brain Archive Information Network (BRAIN UK) A lack of consent to donate tissue hampers progress (2015)
Mitchell, C. et al.
Topics: patient advocacy, biobanks.
The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV). Advances in Experimental Medicine and Biology (2015)
Wilcox, M. et al.
Imaging
Topics: imaging, technology, neurosurgery, glioma.
A position statement on the utility of interval imaging in standard of care brain tumour management: defining the evidence gap and opportunities for future research (2021)
Thomas C Booth, Gerard Thompson, Helen Bulbeck, Florien Boele, Craig Buckley, Jorge Cardoso, Liane Dos Santos Canas, David Jenkinson, Keyoumars Ashkan, Jack Kreindler, Nicky Huskens, Aysha Luis, Catherine Mcbain, Samantha J Mills, Marc Modat, Nick Morley, Caroline Murphy, Sebastien Ourselin, Mark Pennington, James Powell, David Summers, Adam Waldman, Colin Watts, Matthew Williams, Robin Grant, Michael Jenkinson.
Topics: Imaging practices, imaging schedule, future directions.
Glioblastoma post-operative imaging in neuro-oncology: current UK practice (2020)
Booth, T.C., Luis, A., Brazil, L. et al.
Topics: imaging, technology, neurosurgery, glioma, Cochrane Review.
Intraoperative imaging technology to maximise extent of resection for glioma (2017)
Fountain DM, Bryant A, Barone DG, Waqar M, Hart MG, Bulbeck H, Kernohan A, Watts C, Jenkinson MD.
Patient pathway
Topics: glioblastoma, elderly, treatments, meta-analysis, Cochrane review.
Treatment of newly diagnosed glioblastoma in the elderly: a network meta‐analysis (2020)
Hanna C, Lawrie TA, Rogozińska E, Kernohan A, Jefferies S, Bulbeck H, Ali UM, Robinson T, Grant R.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Surviving a Brain Tumour Diagnosis and Living Life Well: The Importance of Patient-Centred Care (2019)
Bulbeck, Helen & Oliver, Kathy.
Topics: Caregiver, decision making.
Defining unmet clinical need across the pathway of brain tumor care: a patient and carer perspective. (2019)
Sage, William et al.
Topics: Cochrane, palliative care, caregivers.
Early palliative interventions for improving outcomes in people with a primary malignant brain tumour and their carers (2019)
Byrne A, Sivell S, Moraes FY, Bulbeck H, Torrens‐Burton A, Bernstein M, Nelson A, Fielding H.
Quality of life
Topics: Glioblastoma, communication, quality of life, qualitative study.
Communication in the context of glioblastoma treatment: A qualitative study of what matters most to patients, caregivers and health care professionals. (2023)
Boele FW, Butler S, Nicklin E, et al.
Topics: management of fatigue, primary brain tumours.
Interventions for the management of fatigue in adults with a primary brain tumour (2022)
Day, J. et al.
Topics: Patient reported outcome measures, brain tumour research.
Systematic review on the use of patient-reported outcome measures in brain tumor studies: part of the Response Assessment in Neuro-Oncology Patient-Reported Outcome (RANO-PRO) initiative. (2021)
Dirven L, Vos ME, Walbert T, Armstrong TS, Arons D, van den Bent MJ, Blakeley J, Brown PD, Bulbeck H, Chang SM, Coens C, Gilbert MR, Grant R, Jalali R, Leach D, Leeper H, Mendoza T, Nayak L, Oliver K, Reijneveld JC, Le Rhun E, Rubinstein L, Weller M, Wen PY, Taphoorn MJB.
Topics: Behaviour changes, personality, glioma.
Identification of characteristics that determine behavioural and personality changes in adult glioma patients. (2021)
Zwinkels H, Dirven L, Bulbeck HJ, Grant R, Habets EJJ, Koekkoek JAF, Oberg I, Oliver K, Pace A, Rooney AG, Vos MJ, Taphoorn MJB.
Topics: Quality of life, patient centred care, challenges living with a brain tumour.
Measuring what matters to the brain cancer community in Effects of Cancer Treatment on the Nervous System, Volume 1. (2020)
Zwinkels H, Dirven L, Bulbeck HJ, Grant R, Habets EJJ, Koekkoek JAF, Oberg I, Oliver K, Pace A, Rooney AG, Vos MJ, Taphoorn MJB.
Topics: communication, glioma, coaching, shared engagement.
Communication skills: the patient as co-pilot in Management of adult glioma in nursing practice (2019)
Bulbeck, H.
Topics: brain tumour, patient, caregiver, advocacy, roles, patient journey, community, patient voice.
Advocacy in Neurology (2019)
Grisold, Wolfgang, and Helen Bulbeck (ed.), ‘Patient and caregiver advocacy’, in Wolfgang Grisold, Walter Struhal, and Thomas Grisold (eds)
Tissue Donation
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Treatment
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Palliative Care
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Genomic Sequencing
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Policy
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Diagnosis
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