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

Abstract: 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-making2. Interviews with parents to understand what is important when making treatment decisions and how these treatment decisions may change over time3. 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.

Lay abstract: Background:Having a child diagnosed with cancer is described as one of the most stressful events for a family. About 126 children in the United Kingdom are diagnosed with neuroblastoma each year, and their prognosis is poor. Even after initial treatment, the disease often returns in 60-70% of children. With no standard treatment when the disease returns, these parents have to make many very difficult decisions over months or even years. This can be agonising for parents in a disease which has such a poor prognosis. We know from other studies that parents want to be involved in making decisions about their child's treatment and look into all treatment options avaliable to improve their child's chance of survival. We also know decision aids can help in making treatment decisions. However, we do not know what it is like for parents to make a series of difficult treatment decisions over time and how these decisions evolve. Understanding this will help provide better support to this parent group through the development of a decision aid.Research aims:My study will develop a web-based decision aid to support parents of a child with neuroblastoma which has relapsed who are making repeated treatment decisions over time. Potential benefit: Decision aids improve confidence in decision-making, reduce potential regret on decisions made, improve communication with healthcare professionals and aid shared decision-making through consideration of people's values and preferences. This study will understand what it is like for parents of a child with neuroblastoma which has relapsed to make repeated treatment decisions over time to inform a decision aid to be used in future consultations. This has the potential to support parents when making repeated decisions, to increase confidence in the choices they make which could reduce decisional regret. Design and methods The study will consist of two phases: Phase 1: I will review scientific literature to understand what is already known about repeated decision-making. I will interview 25-30 parents at different decision points (between the first and fifth decisions). This will explore how parents make repeated treatment decisions and how these decisions may change over time. Phase 2: I will use the findings from phase 1 to inform the development of a decision aid. The development will follow the International Patient Decision Aids Standards. This decision aid will be tested with parents and healthcare professionals to ensure it is easy to use and understand. Patient and Public Involvement (PPI)A meeting with nine parents helped shaped the research design, addressed recruitment, potential participant burden and reviewed the plain English summary. The group confirmed that an online decision aid would be helpful. The PPI group developed an acronym and logo REDMAPP: RElapse Decision MAking Parent Process to give the study identity with the underlying message: 1) RED to reflect the seriousness of neuroblastoma which has relapsed; 2) MAPP to reflect mapping treatment decision-making over time. A second meeting with seven parents focused on changes to the research design suggesting social media to recruit parents for phase 2. This group will meet 6-monthly during the study. A clinical steering group with three doctors has provided guidance for recruitment and involvement of healthcare professionals in the development of the decision aid through national forums. We will meet remotely via skype 6-monthly throughout the study. DisseminationI will publish the study findings in scientific journals and present at international conferences that attract the appropriate professionals, and lay members. 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: CANCER AND NEOPLASMS