In establishing the brain tumour support role at Austin Health, careful consideration was taken to address the unmet supportive care needs of patients, families and carers’ of people with primary malignant brain tumours. As part of this process the Cancer Council Victoria (CCV) “Living with Cancer Education Program “ model was considered as an appropriate vehicle to present information relevant to the need s of people affected by the diagnosis of a primary brain tumour.
The “Living with Cancer Education Program” model has been in operation since 1985, and is designed as a collaboration between the CCV, Cancer treatment centre and the community.
The Austin brain tumour specific program( LWCEP 4 BT) was piloted back in March 2009 as a single day module, with some minor changes to the standard program content, to target the needs of brain tumour patients. Whilst the initial feedback was positive, the long format of the day meant that some potential participants were discouraged from attending due to fatigue issues. The LWCEP 4 BT has developed in structure and content over this time and is now run regularly twice per year, over a 4 week period.
To date 122 people have participated in 7 Brain tumour specific programs run through the Austin. Over 95 % of participants rated the program as “very Satisfactory” or “Satisfactory” and 100% of participants would recommend the LWCEP 4 BT to other people. The program content has been refined each time to include a wide range of topics identified by past and current participants which go some way to meeting the informational needs of patient & carers’.
This presentation will outline the development, structure and content of the LWCEP 4 BT, and look at some of the evaluation feedback from participants, which has helped drive this tumour-specific supportive care program.