New decision-making tool for treatment of relapsed and refractory neuroblastoma
We’re excited to share the launch of a brand-new tool for those navigating treatment pathways for high-risk neuroblastoma. The Redmapp Website is designed to support families facing the difficult decisions that come when their child is faced with uncertainty associated with more complex cases of neuroblastoma.
In the UK, there is an extensive standard frontline treatment plan for high-risk neuroblastoma, involving multiple types of therapy. Because of the complexity of neuroblastoma, there can often be deviations from this plan depending on various factors such as where the disease is located or how it responds to different interventions. In addition, in around half of cases of high-risk neuroblastoma, the disease will not respond to the standard treatment pathway (known as refractory) or may return later (known as relapse).
In these circumstances, parents are often faced with many treatment and care options that lead to difficult and distressing decision-making processes. Helen Pearson, Advanced Nurse Practitioner at The Royal Marsden Hospital, has been working with parents to understand the impact of this through the Redmapp study.
Now, using her findings from the project, which involved detailed parent interviews alongside extensive literature review, Helen has developed the Redmapp website as an information and support tool for parents facing these difficult decision processes.
The website contains a wealth of information for parents dealing with a complex treatment pathway for their child with relapsed or refractory neuroblastoma. As well as signposting credible health information, you can find first-hand accounts from parents about their decision-making experiences and how it impacted them. There is also a range of support tools on the webpage including advice on allied health professionals, connecting with other parents, and perspectives from clinical psychologists.
