Supporting decision making

Parents have to make many difficult decisions over months or years depending on how their child responds to neuroblastoma treatment. This can cause worry and distress for parents.

The REDMAPP research study aims to develop a decision aid to support parents when their child has relapsed neuroblastoma, by gaining a greater understanding of how parents make a series of repeated treatment-related decisions.

REDMAPP is an acronym for RElapse Decision MAking Parent Process. 

About the REDMAPP study

When a child is diagnosed with neuroblastoma, there is a treatment protocol which guides parents and healthcare professionals through what treatment to give and when. 

Unfortunately if the disease returns, there is no protocol to follow for relapsed neuroblastoma.  This means parents are presented with various treatment options which can be frequently revisited depending on the child’s response to treatment. 

As a result, parent often make a series of repeated complex decisions about treatment. To help support parents in making these decisions the REDMAPP study will develop a decision aid. 

There is no decision aid which supports parents who are making a series of repeated treatment decisions. REDMAPP will be the first decision aid to support parents in doing this.

Share your experience of relapsed neuroblastoma

Are you a parent of a child with relapse neuroblastoma and have recently made a treatment related decision? 

If you would like to share your experiences of how you made a treatment decision, please visit http://www.redmappstudy.co.uk where you can read more about the study and the research team.

For more information regarding REDMAPP, please contact Helen Pearson, Chief Investigator for the study on helenpearson1@nhs.net