Dr Melissa Carlson

Objective: The objective of this study was to explore the experiences of distressed people calling helplines regarding offer and uptake of financial services after cancer diagnosis. Methods: Cancer patients and caregivers reported whether they had discussed then used financial services and perceptions surrounding service uptake. Associations between being offered services and demographic, clinical and financial characteristics were explored. Results: Of the 508 patients and caregivers in this sample, 107 (21%) people who recalled discussing financial support used the service. Of those, 34 (32%) participants actioned a financial support referral, of which 32 (94%) reported that the support was helpful. Of the 401 (79%) who did not recall discussing financial support, 26 (6%) would have liked to do so. The following characteristics were significantly associated with a greater likelihood of discussing financial support: younger age, being married, metastatic disease, higher out-of-pocket costs, not having private health insurance, being on leave and being absent for more days from work. Conclusions: Although users of financial supports find them helpful, there is need for more structured approaches to referral to achieve equitable access. Implications for public health: A pro-active, structured approach to assessing financial toxicity and offering support is warranted in community-based organisations that offer cancer information and support.

Background: Despite the impact of cognitive decline during brain cancer care, implementing routine cognitive assessment can be challenging. Effective implementation of cognitive assessment necessitates an understanding of implementation from the patient perspective. However, little is known about how people with glioma and their caregivers experience cognitive changes, assessment and support. Objective: To understand the lived experiences of changes in cognition for people with glioma and their caregivers including experiences of: i) perceived or objectively measured cognitive decline (or absence of decline); ii) cognitive assessment following diagnosis, and; iii) met and unmet cognition-related supportive care needs. Design: Semi-structured qualitative telephone interviews were conducted with people with gliomas and support persons and analysed using reflexive thematic analysis. Setting(s): Two Australian cancer services Participants: 18 people with glioma and caregivers Methods: Semi-structured qualitative telephone interviews were conducted with people with gliomas and caregivers and analysed using reflexive thematic analysis. Results: People with glioma (n = 5) and caregivers (n = 13) completed interviews. Four themes were identified: Cognition needs to be considered within the context of glioma diagnosis and treatment; concerns about cognition were initially subordinate to survival but become important; there are challenges identifying and communicating about people with gliomas' changes in cognition; cognition-related supportive care can be helpful but challenging for people with glioma and caregivers to identify and access. Conclusions: Changes to cognition can have considerable impacts of people with glioma and their caregivers which may be overshadowed by treatment and survival. A multi-disciplinary approach to timely cognitive screening, structured referral pathways, and communication with caregivers may provide opportunities for support. Registration: n/a Tweetable abstract: Identifying cognitive changes in people with glioma is important and challenging. A multidisciplinary approach and inclusion of care coordination and caregivers can help.