QOS-23: UNDERSTANDING THE REHABILITATION ISSUES FACING PAEDIATRIC NEURO-ONCOLOGY PATIENTS AND SURVIVORS, THE PARENTS' PERSPECTIVE

This paper presents findings from a qualitative study that explores parents' perspectives of the neuro-rehabilitation of their children. International statistics regarding paediatric brain tumours and associated conditions are hard to compare as they are measured differently worldwide and definitions of terms are not consistent. For example, the American Brain Tumor Association uses data from children aged 0-19 years, whilst Cancer Research UK uses ages 0-14. This can impact on the way children are diagnosed, treated and rehabilitated, particularly if a child is diagnosed in one country but treated in another. Themes to emerge include the lack of an internationally recognised protocol for the neuro-rehabilitation of paediatric neuro-oncology survivors and coordination for rehabilitation, an inconsistent approach towards baseline assessments of a child's cognitive function and IQ level, a lack of coordination between multidisciplinary service providers and inconsistent access to local support services by the family. There does not appear to be an agreement about baseline assessment, follow up cognitive assessment and targeted rehabilitation strategies internationally. These deficiencies can be observed at all levels of treatment and rehabilitation, locally and nationally, and seem particularly pronounced when a child is resident in one country but receives treatment in another. The paper explores these challenges and considers possible ways forward in light of the findings. It concludes that there is an urgent need for an internationally recognised standardised protocol for the neuro-rehabilitation of children and young people treated for and living with brain tumours.