Development of a treatment decision aid for parents of a child with neuroblastoma which has relapsed. REDMAPP: RElapse Decision MAking Parent Process

Background: Neuroblastoma is a childhood solid tumour cancer. It accounts for approximately 7% of childhood cancers overall. At diagnosis, children present with high risk disease and chance of cure is between 30-40%. Following initial treatment, 60% of children relapse and only 8% of children who relapse will be cured long-term.

At relapse, there is no standard treatment protocol. Clinicians present parents with varying treatment options to help them in deciding which treatments to opt for. Children can potentially receive multiple treatments over months or years.

Therefore, treatment decision-making for parents of a child with neuroblastoma which has relapsed is repeated multiple times, over time rather than a one-off event.

Decision aids positively support decision-making but existing ones only focus on discreet one-off decisions, rather than multiple decision-making. This study aims to fill this gap.

Aims: To develop a web-based decision aid which supports parents of a child with neuroblastoma which has relapsed who are making multiple treatment decisions over time. Objectives: 1. Undertake a scoping review focused on multiple treatment decisions-making 2.

Interviews with parents to understand what is important when making treatment decisions and how these treatment decisions may change over time 3. Develop a decision aid for parents who are making multiple treatment decisions over time.

Methods: The study will consist of 2 phases: Phase 1 Scoping review to ascertain what is already known about multiple treatment decision-making. To expand knowledge and understand decision-making from different perspectives. This will inform interviews with 25-30 parents who are at different decision-making points.

These interviews will develop in-depth understanding of what the decision-making process is like for parents of a child with neuroblastoma which has relapsed.

Phase 2 Development of a decision aid underpinned by the work from phase 1 and user testing with parents and healthcare professionals.

Anticipated impact: Patient benefit: Decision aids: 1) improve confidence in decision-making; 2) reduce decisional regret; 3) enhanced patient-clinician communication; 4) aid shared decision-making through consideration of people's values and preferences.

A decision aid has the potential to support parents when making multiple decisions, to increase confidence in the choices they make which could reduce decisional regret.

Changes in NHS service: Within paediatric oncology, precision medicine in evolving resulting in more treatment options for difficult to treat cancers, such as neuroblastoma.

Understanding decision-making on multiple occasions over time is novel, as current decision aids only focus on discrete one-off decisions.

This decision aid has the potential to be applicable to parents of children with other complex life-limiting illnesses, who may also make multiple treatment decisions.

Dissemination: I will publish the study findings in scientific journals and present at international conferences that attract the appropriate professionals. This will include disseminating the findings from phase 1, and presenting the decision aid.

I will liaise with national/international professional networks, charities, social media, PPI and medical doctors to assist with dissemination.

As an internationally renowned nurse within this field, I am well placed to share and disseminate across the networks, thus leading to increased parent benefit and impact.