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

Boele, F.; Rosenlund, L.; Nordentoft, S.; Melhuish, S.; Nicklin, E.; Ryden, I.; Williamson, A.; Donders-Kamphuis, M.; Preusser, M.; Le Rhun, E.; Kiesel, B.; Minniti, G.; Furtner, J.; Dirven, L.; Taphoorn, M.; Galldiks, N.; Ruda, R.; Chalmers, A.; Short, SC.; Piil, K.

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

All Authors

Boele, F.

Rosenlund, L.

Nordentoft, S.

Melhuish, S.

Nicklin, E.

Ryden, I.

Williamson, A.

Donders-Kamphuis, M.

Preusser, M.

Le Rhun, E.

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LTHT Author

Short, Susan

LTHT Department

Oncology

Publication Date

2024

Item Type

Journal Article

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.