Florien Boele
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Improving supportive care provision for informal caregivers of glioma patients
Open Date: 2015-08-01
Close Date: 2016-08-01
Articles (21)
Year:
2025
Year:
2025
Year:
2025
Year:
2025
Background Meningiomas account for ~25% of all primary brain tumors. These tumors have a relatively favorable prognosis with ~92% of meningioma patients surviving >5 years after diagnosis. Yet, patients can report high disease burden and survivorship issues even years after treatment, affecting health-related quality of life (HRQOL). We aimed to systematically review the literature and synthesize evidence on HRQOL in meningioma patients across long-term survival, defined as ≥2 years post-diagnosis. Methods Systematic literature searches were carried out using Medline, EMBASE, CINAHL, PsycINFO, and Web of Science Core Collection. Any published, peer-reviewed articles with primary quantitative, qualitative, or mixed-methods data covering the physical, mental, and/or social aspects of HRQOL of meningioma survivors were included. A narrative synthesis method was used to interpret the findings. Results Searches returned 2253 unique publications, of which 21 were included. Of these, N = 15 involved quantitative methodology, N = 4 mixed methods, and N = 2 were qualitative reports. Patient sample survival ranged from 2.75 to 13 years. HRQOL impairment was seen across all domains. Physical issues included persevering symptoms (eg, headaches, fatigue, vision problems); mental issues comprised emotional burden (eg, high prevalence of depressive symptoms and anxiety) and cognitive complaints; social issues included role limitations, social isolation, and affected work productivity. Due to study heterogeneity, the impact of treatment on long-term HRQOL remains unclear. Conclusions The findings from this review highlight the areas of HRQOL that can be impacted in long-term survivorship for patients with meningioma. These findings could help raise awareness among clinicians and patients, facilitating support provision.
Year:
2024
Background Neuro-oncology patients and caregivers should have equitable access to rehabilitation, supportive-, and palliative care. To investigate existing issues and potential solutions, we surveyed neuro-oncology professionals to explore current barriers and facilitators to screening patients’ needs and referral to services. Methods Members of the European Association of Neuro-Oncology and the European Organisation for Research and Treatment of Cancer Brain Tumor Group (EORTC-BTG) were invited to complete a 39-item online questionnaire covering the availability of services, screening, and referral practice. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored. Results In total, 103 participants completed the survey (67% women and 57% medical doctors). Fifteen professions from 23 countries were represented. Various rehabilitation, supportive-, and palliative care services were available yet rated “inadequate” by 21–37% of participants. Most respondents with a clinical role (n = 94) declare to screen (78%) and to refer (83%) their patients routinely for physical/cognitive/emotional issues. Survey completers (n = 103) indicated the main reasons for not screening/referring were (1) lack of suitable referral options (50%); (2) shortage of healthcare professionals (48%); and (3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology-specific issues (75%), improving the availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%). Conclusions Detecting and managing neuro-oncology patients’ and caregivers’ rehabilitation, supportive,- and palliative care needs can be improved. Better international collaboration can help address healthcare disparities.
Year:
2024
Year:
2024
Year:
2024
Year:
2024
Year:
2024
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2023
Year:
2022
Collaborators (13)
Johan Koekkoek
Neurologist / Neuro-oncologist / Head of outpatient clinic
Leiden University Medical Center
Louise Murray
Associate Professor and Honorary Consultant Clinical Oncologist
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Linda Dirven
Leiden University Medical Center
Petra Hoogendoorn
Leiden University Medical Center
Martin Klein
University of Amsterdam
Jan-Michael Werner
University of Cologne
Karin Piil
Copenhagen University Hospital
Jude Watson
Reader
University of York
Madeline Pe
Head
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Matthias Preusser
Medical University
Amie Woodward
York St John University
Michael Platten
Heidelberg University
Nienke Biermasz
Professor of Internal Medicine
Leiden University Medical Center
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