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

Abstract

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. Members of the European Association of Neuro-Oncology (EANO) 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 availability of services, screening and referral practice. Responses were analyzed descriptively; associations between sociodemographic/clinical variables and screening/referral practice were explored. In total, 103 participants completed the survey (67% women; 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%); 3) long waiting lists (42%). To improve service provision, respondents suggested there is a need for education about neuro-oncology specific issues (75%), improving availability of services (65%) and staff (64%), developing international guidelines (64%), and strengthening the existing evidence-base for rehabilitation (60%). 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.