Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2017

Communicating with consumers about immunotherapy: balancing reality with hope (#402)

Jenny Mothoneos 1 , Elizabeth Humphries 1
  1. Cancer Council NSW, Woolloomooloo, NSW, Australia

Background:

As the use of immunotherapy to treat cancer grows, Cancer Council identified a need to develop an easy-to-read, evidence-based resource on the topic. It produced an online fact sheet on immunotherapy, covering what immunotherapy is, how it works, types of immunotherapy, the challenges of using this treatment, and managing side effects.

Methods:

In line with the existing Cancer Council publication process, the draft fact sheet was sent to a panel of relevant clinicians, allied health professionals and consumers for review. Relevant Cancer Council staff across Australia were also asked to review the draft resource. The panel was asked to provide feedback on the content’s breadth and relevance, accuracy, language and tone.

Results:

The review process highlighted the confusion around immunotherapy and reinforced the need to produce an accurate and simple resource on a complex topic. The main challenge was in how much detail to provide, particularly about side effects. Some reviewers expressed concern the comprehensive list of side effects was confronting. While acknowledging that there is still much we do not know about immunotherapy, one of the reviewers emphasised that it is important patients can recognise side effects and react appropriately. Conversely, the list of side effects created uncertainty for the consumer who had felt hopeful after her great outcomes. To balance these concerns with the need for clear and accurate information, side effects were grouped into common and rare toxicities, and the call to action to speak to a doctor was highlighted. Such strategies helped ensure the fact sheet was not overly negative or falsely optimistic.

Conclusions:

Involving a range of reviewers in developing a new resource helps guide the amount and type of information to provide on a rapidly evolving complex topic.