Optimal care of people with brain cancer in the emergency department: A cross-sectional survey of outpatient perceptions.

Objective: People diagnosed with brain cancer commonly present to the emergency department (ED). There is uncertainty about essential components and processes of optimal care from the perspective of consumers, and few guidelines exist to inform practice. This study examined the perceptions of outpatients and their support persons regarding what constitutes optimal care for people with brain cancer presenting to the ED.

Methods: A cross sectional descriptive survey study was undertaken. Participants included adults attending hospital outpatient clinics ( ​= ​181, 60% of eligible participants). Participants completed a survey assessing perceptions of optimal care for brain cancer patients presenting to emergency department and socio-demographic characteristics.

Results: The survey items endorsed as 'essential' by participants included that the emergency department team help patients: 'understand signs and symptoms to watch out for' (51%); 'understand the next steps in care and why' (48%); 'understand if their medical condition suggests it is likely they will die in hospital' (47%); 'ask patients if they have a substitute decision maker and want that person told they are in the emergency department' (44%); 'understand the purpose of tests and procedures' (41%).

Conclusions: Symptom management, effective communication and supported decision-making should be prioritised by ED teams. Further research to establish the views of those affected by brain cancer about essential care delivered in the ED setting, and to compare these views with the quality of care that is actually delivered, is warranted.