Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

Abstract

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.

People

Boele, Florien

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Rosenlund, Lena

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Nordentoft, Sara

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Melhuish, Sara

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Nicklin, Emma

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Rydén, Isabelle

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Williamson, Aoife

Author

Williamson, Aoife and Houston, Peter and Paterson, Jennifer and Chalmers, Anthony J. and McLoone, Philip and Fullerton, Natasha and Foo, Sin Yee and James, Allan and Nowicki, Stefan (2024) Dosimetric comparison of hippocampal sparing technologies in patients with low grade glioma. Neuro-Oncology Advances, 6 (1): vdae131. ISSN 2632-2498

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

Derby, Sarah and Jackson, Mark R. and Williams, Karin and Stobo, Jamie and Kelly, Caroline and Sweeting, Lorna and Shad, Shumaila and Herbert, Christopher and Short, Susan C. and Williamson, Aoife and James, Allan and Nowicki, Stefan and Bulbeck, Helen and Chalmers, Anthony (2024) Concurrent olaparib and radiotherapy in elderly patients with newly diagnosed glioblastoma: the phase I dose escalation PARADIGM trial. International Journal of Radiation Oncology, Biology, Physics, 118 (5). pp. 1371-1378. ISSN 0360-3016

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Donders-Kamphuis, Marike

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Preusser, Matthias

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Le Rhun, Emilie

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Kiesel, Barbara

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Minniti, Giuseppe

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Furtner, Julia

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Dirven, Linda

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Taphoorn, Martin

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Galldiks, Norbert

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Rudà, Roberta

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Chalmers, Anthony

Author

Williamson, Aoife and Houston, Peter and Paterson, Jennifer and Chalmers, Anthony J. and McLoone, Philip and Fullerton, Natasha and Foo, Sin Yee and James, Allan and Nowicki, Stefan (2024) Dosimetric comparison of hippocampal sparing technologies in patients with low grade glioma. Neuro-Oncology Advances, 6 (1): vdae131. ISSN 2632-2498

Jackson, Mark R. and Richards, Amanda R. and Oladipupo, Abdul-Basit Ayoola and Chahal, Sandeep K. and Caragher, Seamus and Chalmers, Anthony J. and Gomez-Roman, Natividad (2024) ClonoScreen3D - a novel three-dimensional clonogenic screening platform for identification of radiosensitizers for glioblastoma. International Journal of Radiation Oncology, Biology, Physics, 120 (1). pp. 162-177. ISSN 0360-3016

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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Short, Susan C.

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

Derby, Sarah and Jackson, Mark R. and Williams, Karin and Stobo, Jamie and Kelly, Caroline and Sweeting, Lorna and Shad, Shumaila and Herbert, Christopher and Short, Susan C. and Williamson, Aoife and James, Allan and Nowicki, Stefan and Bulbeck, Helen and Chalmers, Anthony (2024) Concurrent olaparib and radiotherapy in elderly patients with newly diagnosed glioblastoma: the phase I dose escalation PARADIGM trial. International Journal of Radiation Oncology, Biology, Physics, 118 (5). pp. 1371-1378. ISSN 0360-3016

Derby, Sarah and Jackson, Mark R. and Williams, Karin and Stobo, Jamie and Kelly, Caroline and Sweeting, Lorna and Shad, Shumaila and Herbert, Christopher and Short, Susan C. and Williamson, Aoife and James, Allan and Nowicki, Stefan and Bulbeck, Helen and Chalmers, Anthony J. (2024) Concurrent olaparib and radiation therapy in older patients with newly diagnosed glioblastoma: the phase 1 dose-escalation PARADIGM trial. International Journal of Radiation Oncology, Biology, Physics, 118 (5). pp. 1371-1378. ISSN 0360-3016

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Piil, Karin

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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the Nurse and Allied Health Professionals Committee

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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the Disparity and Inclusion Committee of EANO

Author

Boele, Florien and Rosenlund, Lena and Nordentoft, Sara and Melhuish, Sara and Nicklin, Emma and Rydén, Isabelle and Williamson, Aoife and Donders-Kamphuis, Marike and Preusser, Matthias and Le Rhun, Emilie and Kiesel, Barbara and Minniti, Giuseppe and Furtner, Julia and Dirven, Linda and Taphoorn, Martin and Galldiks, Norbert and Rudà, Roberta and Chalmers, Anthony and Short, Susan C. and Piil, Karin and the Nurse and Allied Health Professionals Committee and the Disparity and Inclusion Committee of EANO (2024) Inequalities in access to neuro-oncology supportive care and rehabilitation: a survey of healthcare professionals’ perspectives. Neuro-Oncology Practice, 11 (4). pp. 484-493. ISSN 2054-2577

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