INNV-28. SCIENTIFIC LITERACY AND DECISION-MAKING OF PATIENT FAMILIES IN PEDIATRIC NEURO-ONCOLOGY

Abstract

Abstract Pediatric neuro-oncology, especially when treating typically terminal tumors such as DIPG, exists in a fluid, complicated state. There exists no standard, effective, and tolerable treatment. This means all patients are on clinical trials for treatment, placing the child’s care on the cutting edge of an already complicated field of research. A concern frequently brought up by parents is the struggle to understand scientific articles about their child's condition. Without a solid foundational understanding of molecular biology, the majority of their time reading research is spent googling terms only scientists are familiar with. A survey of 40 questions was developed and disseminated amongst families of children diagnosed with DIPG/DMG via email, with 64 participants The intent was to investigate what level of relevant scientific literacy the average parent had at diagnosis, during decisions on treatment, and where it is currently. RESULTS: showed at the time of diagnosis, 89.4% of families had never heard of Diffuse Intrinsic Pontine Glioma, let alone understood its mechanisms and treatment options. There is existing patient education, but current education does not go into the level of scientific detail needed. The result shows that 86.5% of families are spending at least 10 hours each week researching conditions outside of doctor appointments. At the time of diagnosis, 84.4% of families have little to no familiarity with clinical trials at all, yet 61.4% of those families are making decisions on participation under a month from diagnosis. The decisions families make impact patients’ quality of life, the development of effective and safe treatments, and if their child passes, their grieving. A better understanding of disease and treatment has been consistently shown to result in better outcomes by a variety of measures. Patient education focused on scientific literacy is desperately needed to match families' decision-making needs.