QL-17 * COMMUNITY BRAIN TUMOUR FORUMS: LESSONS FROM THE FRONT LINE

Abstract

BACKGROUND: Informational demands of patients and families affected by brain cancer are well documented. Access to accurate well-balanced material is a vital element in ensuring their participation in their healthcare journey. Since 2011, Austin Health has partnered with other organisations to present current, relevant clinical and supportive care information to a self selected community audience. METHODS: Program content was drawn from high prevalence clinical issues, support groups and anecdotal feedback from a variety of sources. Forums have developed from a 3-hour evening session to full day forums with invited speakers and exhibitors. Importantly, it has been vital to promote to buy-in of health institutions, peer support services and charities. We balanced opportunities to hear from experts, specialised support services and consumer sharing experiences. RESULTS: Since 2011, 3 forums have been conducted attracting 205 participants in total. Post forum evaluations were conducted, with a response rate of 52%. All presentations rated greater than 4.76/5. Clinical trials, research and brain tumour science presentations were rated as most valuable. Logistical challenges include competing interests of different organisations, and agendas of attendees. Balancing technical verses layman language, evidence based information verses alternate treatment options, and ensuring effective facilitation of sessions has led to program content revision. The use of post-forum evaluations allowed us to identify a range of areas that were an unmet need, which included such information as role of clinical trials and an understanding of specific cognitive syndromes and their impact on patient and family. CONCLUSION: Community brain tumour education forms a positive step to ensuring patients and families are well resourced, with opportunities to broaden support options. Bringing together of clinicians, consumers and philanthropy has led to coordinated relevant information being available to consumers unable to access neuro-oncology care coordination.