The provision of cognitive supportive care following brain tumour: a national study with brain cancer care coordinators

Abstract Purpose Despite the high prevalence of cognitive impairment in brain tumour survivors, supportive care primarily remains focused on physical/psychosocial health. Little is known about the cognitive screening/interventions available to brain tumour survivors in routine care. Further, national optimum-care pathways omit recommendations for low-grade tumour diagnoses. We therefore aimed to explore the reported cognitive needs of brain tumour patients and current practice of cognitive screening/intervention. Methods Two semi-structured focus groups (n=3 in each) and individual interviews (n=4) were conducted online with 10 brain cancer care co-ordinators (BCCCs) throughout Australia, then audio recorded and transcribed. Data were analysed thematically, and data interpretation was structured by an interpretivist design. Results The lack of a standardised model of cognitive care for BCCCs to follow was an overarching meta-theme. Alongside this, all themes varied notably depending on tumour grade. While unmet cognitive needs were reported across both high- and low-grade tumour survivors, the type of support available, accessed, or sought, reportedly varied. Three key themes illustrated these differences: cognitive support accessibility and involvement is shaped by tumour grade; involvement of and impact on caregivers differs depending on tumour grade; and help-seeking for cognition varies by tumour grade. Conclusions Our results highlight the need for, and limited availability of, standardised cognitive care following a brain tumour diagnosis. Cognitive screening and intervention were identified as continuing areas of unmet need for both high- and/or low-grade brain tumour survivors. Optimum care pathways could be improved by including standard recommendations for cognitive screening and management for all brain tumour survivors.