What is the REDMAPP study?

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

“We need to understand what the process of repeated decision-making is like for parents so that this can be improved for parents in the future” Parent

This website has been designed for parents to learn more about the REDMAPP study and how they could be involved.

The study will consist of 2 phases. In phase 1, parents who are making treatment decisions when their child has relapsed or refractory neuroblastoma can take part in an interview (discussion with the researcher) about how they reached their decisions on what treatment to opt for. This information will inform phase 2 of the study. In phase 2, the decision aid will be developed and tested to see how useable it is in supporting parents who are making multiple difficult treatment decisions.

*Study updated in July 2021 to include parents of children with refractory neuroblastoma*

What does REDMAPP stand for?

REDMAPP is an acronym for RElapse/REfractory Decision MAking Parent Process.  The underlying message: RED to reflect the seriousness of neuroblastoma which has relapsed or not responded to standard treatment; MAPP to reflect mapping treatment decision-making over time.    The REDMAPP acronym and study logo were developed by the Patient Public Involvement Group (see PPI page).  Creating identity of the study was important to support the developments from the outset (and hopefully is easy to remember!)

Why is this study needed?

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 and limited protocols for refractory 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, parents often make a series of repeated complex decisions about treatment.

There has been research looking at parent treatment decision-making when their child has cancer.  This includes parents who are considering participating in a clinical trial or opting to manage symptoms without cancer-directed treatment and the discussions between parents on how decisions are reached.  There is no research which has looked at how parents make repeated decisions and how those decisions may change over time as their child’s illness changes.

Decision aids can be beneficial when decisions become complex with variable and uncertain outcomes such as in the case of relapsed or refractory neuroblastoma. Given this it maybe that a decision aid can support parents with their decision-making. Decision aids are used in adults cancer care. They have been evaluated and shown to improve confidence in making decisions, empower people to be involved, help facilitate discussions with healthcare professionals and reduce decisional conflict and regret. 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.