Patients, parents and professional perspectives on molecular radiotherapy for neuroblastoma and paediatric neuroendocrine cancers.

Abstract

Treatment with radioactive drugs (molecular radiotherapy, MRT) is an option for selected children with neuroblastoma and neuroendocrine cancers. As few hospitals are appropriately equipped and staffed to provide paediatric MRT, many families have to travel long distances from home for prolonged periods. To improve professional understanding of the challenges faced by children receiving these treatments and their parents, and to help them appreciate the difficulties faced by professionals in delivering complex treatments, a meeting bringing together parents, patients and professionals was held. Ten people (five parents of children with neuroblastoma, two parents of children with neuroendocrine cancers, two adults who had received treatment for neuroendocrine cancers in childhood and one adult treated for neuroblastoma) gave personal perspectives of treatment with MRT. Three professionals from different disciplines involved with this treatment and research to improve its results gave their views on the administration of MRT, and how treatment outcomes might be improved. Fifteen people, including parents and professionals, contributed to the general discussion. Following the meeting, a questionnaire was circulated to those attending to capture their overall views, and any reflections they may have had after the meeting. Whilst many positive comments and compliments were received, this report focuses on the reported challenges and difficulties. The event is an example of meaningful Patient and Public Involvement and Engagement and has resulted in development of better information resources, strategies to mitigate inconveniences experienced and a standing group of advocates to advise on research design and acceptability.