TY - JOUR
T1 - Inequalities in access to neuro-oncology supportive care and rehabilitation
T2 - A survey of healthcare professionals' perspectives
AU - Boele, Florien
AU - Rosenlund, Lena
AU - Nordentoft, Sara
AU - Melhuish, Sara
AU - Nicklin, Emma
AU - Rydén, Isabelle
AU - Williamson, Aoife
AU - Donders-Kamphuis, Marike
AU - Preusser, Matthias
AU - Le Rhun, Emilie
AU - Kiesel, Barbara
AU - Minniti, Giuseppe
AU - Furtner, Julia
AU - Dirven, Linda
AU - Taphoorn, Martin
AU - Galldiks, Norbert
AU - Rudà, Roberta
AU - Chalmers, Anthony
AU - Short, Susan C
AU - Piil, Karin
N1 - © The Author(s) 2024. Published by Oxford University Press on behalf of the Society for Neuro-Oncology and the European Association of Neuro-Oncology. All rights reserved. For commercial re-use, please contact [email protected] for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact [email protected].
PY - 2024/8
Y1 - 2024/8
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85198660639&partnerID=8YFLogxK
U2 - 10.1093/nop/npae023
DO - 10.1093/nop/npae023
M3 - Journal article
C2 - 39006521
SN - 2054-2577
VL - 11
SP - 484
EP - 493
JO - Neuro-Oncology Practice
JF - Neuro-Oncology Practice
IS - 4
ER -