Poster Presentation Cancer Survivorship 2019

Building the bridge to brain cancer survivorship: a work in progress. (#139)

Dianne Legge 1 , Steffi Renehan 2 , Emma Daly 3 , Louise Saliba 4 , Paula Howell 5
  1. ONJ Cancer Centre, Austin Health, Heidelberg, Victoria, Australia
  2. ONJ Cancer Centre, Austin Health, Heidelberg, Victoria, Australia
  3. Cabrini Health, Malvern, Victoria, Australia
  4. Monash Health, Clayton, Victoria, Australia
  5. North Eastern Melbourne Integrated Cancer Service, Heidelberg, Victoria, Australia

Background:

Information and supportive care resources for people with brain cancer are currently targeted to those with aggressive disease profiles. However, improved survival duration has raised awareness of the impacts and challenges for people living with grade 2 and 3 brain cancers.  These survivors can experience significant and long-term physical, cognitive and behavioural impacts from the tumour and its treatment.1 Building the bridge is a Victorian cancer survivorship grant project aimed at developing tailored and accessible resources for brain cancer survivors, supporting self-management and providing tools for health professionals to use in survivorship conversations.

Process:

An experience-based co-design approach has placed survivor experiences central to the project. Stage one has seen initial focus groups define high prevalence issues faced by survivors in returning to life after a brain cancer diagnosis. Consultation with health professionals across neuro-oncology and key project partners have refined themes and explored accessibility. Further consumer focus groups will prioritise and direct the format of the resource.  Stage two will continue the co-design process with analysis of the collected data and development of the survivorship resource. Review and feedback from survivors and health professionals will be incorporated prior to resource production. The final stage will entail dissemination, resource testing and evaluation of the survivorship resource by brain cancer survivors not previously engaged in the co-design. Emerging themes are centered on mental health, fatigue, family resources, and neuro-cognitive rehabilitation.

Expected Outcome:

This project will create a survivorship resource tailored to the needs and priorities of Victorian brain cancer survivors, carers and health professionals.  The project partners will ensure these resources are sustainable and widely available, providing accessible support for survivorship transition. The Building the Bridge project is aimed at improving the capacity of brain cancer survivors and families to access appropriate post-treatment support and re-engage in community life.

  1. 1. Sloane, K., et al., Late effects in survivors of central nervous system tumors: reports by patients and proxies. Journal of Cancer Survivorship, 2016. 10(2): p. 234-240.