Objective: Parents of children with refractory or relapsed high-risk neuroblastoma (RR NB) require thorough and objective guidance in understanding the complex rationale for treatment and evaluating clinical trials that may be considered for their child. Approximately 40 children per year in the United Kingdom have RR NB and are potentially eligible for enrollment in clinical trials. Despite available clinical trials within the UK, a significant percentage of parents seek access to clinical trials abroad for their children.
Methods: A novel nursing position has recently been established as a central contact and service for all patients with RR NB in the UK. This new post is based at Great Ormond Street Hospital (GOSH) and aims to liaise between the National Health Service (NHS) physicians and the parents considering clinical trials open in the UK or abroad. The programme effectiveness is evaluated by tracking cases and soliciting ongoing feedback on parent and physician satisfaction.
Results: Jointly supported by the charity Solving Kids’ Cancer and the NHS staff at GOSH, this new position provides an objective service to families requiring sensitive guidance in a critical situation. The nurse will facilitate the creation and operation of a national advisory panel for children with RR NB which will serve as an unbiased platform for parents to obtain second opinions. The position will also provide an opportunity to collect data on the different processes of neuroblastoma care around the UK, with a view of improving best practices. Successes and challenges of this unique service will inform and further define the role, and set new standards for parent education in paediatric cancer.
Conclusions: This clinical nurse specialist role serves as a successful model for all paediatric cancers. Objective, evidence-based information helps parents navigate the complex landscape of clinical trials for children with a poor-prognosis cancer.