Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives

Florien Boele; Lena Rosenlund; Sara Nordentoft; Sara Melhuish; Emma Nicklin; Isabelle Rydén; Aoife Williamson; Marike Donders-Kamphuis; Matthias Preusser; Emilie Le Rhun; Barbara Kiesel; Giuseppe Minniti; Julia Furtner; Linda Dirven; Martin Taphoorn; Norbert Galldiks; Roberta Rudà; Anthony Chalmers; Susan C Short; Karin Piil

doi:10.1093/nop/npae023

Inequalities in access to neuro-oncology supportive care and rehabilitation: A survey of healthcare professionals' perspectives

Neurooncol Pract. 2024 Mar 15;11(4):484-493. doi: 10.1093/nop/npae023. eCollection 2024 Aug.

Authors

Florien Boele^{1

2}, Lena Rosenlund³, Sara Nordentoft⁴, Sara Melhuish⁵, Emma Nicklin¹, Isabelle Rydén⁶, Aoife Williamson⁷, Marike Donders-Kamphuis^{8

9}, Matthias Preusser¹⁰, Emilie Le Rhun^{11

12}, Barbara Kiesel¹³, Giuseppe Minniti^{14

15}, Julia Furtner¹⁶, Linda Dirven¹⁷, Martin Taphoorn¹⁷, Norbert Galldiks^{14

15}, Roberta Rudà¹⁸, Anthony Chalmers¹⁹, Susan C Short^{20

21}, Karin Piil^{22

23}

Affiliations

¹ Leeds Institute of Medical Research, St James's Hospital, University of Leeds, Leeds, UK.
² Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
³ Regional Cancer Centre Stockholm-Gotland, Stockholm, Sweden.
⁴ Department of Neurosurgery, Neurocentre, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.
⁵ Speech and Language Therapy Department, St Bartholomew's Hospital, West Smithfield, London, UK.
⁶ Department of Clinical Neuroscience, Institute of Neuroscience and Physiology, University of Gothenburg, Sahlgrenska Academy, Gothenburg, Sweden.
⁷ Beatson West of Scotland Cancer Centre, Glasgow, UK.
⁸ Department of Neurosurgery, Haaglanden Medisch Centrum, The Hague, The Netherlands.
⁹ Department of Neurosurgery, Erasmus MC-University Medical Center Rotterdam, Rotterdam, The Netherlands.
¹⁰ Division of Oncology, Department of Medicine, Medical University, Vienna, Austria.
¹¹ Department of Neurosurgery, Clinical Neuroscience Center, University Hospital and University of Zurich, Zurich, Switzerland.
¹² Department of Neurology, Clinical Neuroscience Center, University Hospital and University of Zurich, Zurich, Switzerland.
¹³ Department of Neurosurgery, Medical University Vienna, Austria.
¹⁴ Department of Radiological Sciences, Oncology and Anatomical Pathology & Sapienza University of Rome, Rome, Italy.
¹⁵ IRCCS Neuromed, Pozzilli, Italy.
¹⁶ Faculty of Medicine and Dentistry, Research Center for Medical Image Analysis and Artificial Intelligence (MIAAI), Danube Private University, Krems, Austria.
¹⁷ Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands.
¹⁸ Division of Neuro-Oncology, Department of Neuroscience, University of Turin, Turin, Italy.
¹⁹ School of Cancer Sciences, University of Glasgow, UK.
²⁰ Leeds Institute of Medical Research, University of Leeds, Leeds, UK.
²¹ Department of Clinical Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK.
²² Department of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, Rigshospitalet, Copenhagen, Denmark.
²³ Department of People and Technology, Roskilde University, Roskilde, Denmark.

PMID: 39006521
PMCID: PMC11241368 (available on 2025-03-15)
DOI: 10.1093/nop/npae023

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.

Keywords: brain tumor; disparity; inequalities; rehabilitation; supportive/palliative care.

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