Barriers to Schooling in Survivorship: The Role of Neuropsychological Assessment

Abstract

PURPOSE: Pediatric cancer survivorship rates continue to improve, although disease- and treatment-related neurocognitive impacts substantively affect survivors’ educational access and availability for learning. Receiving formal educational supports substantially improves survivors’ academic progress and graduation rates; however, parents of survivors report obtaining such support is stressful, in part due to limited knowledge on their part and that of their oncology providers. METHODS: Parents (N = 195) of pediatric survivors across the United States were surveyed to explore specific barriers to obtaining appropriate educational supports and the facilitating role of the oncologist. RESULTS: Parent-reported barriers included limited access to formal educational supports, under-referral to neuropsychology services, and need for more information about available supports and how best to advocate for these, when needed. Not only were few survivors (35.4%) referred for neuropsychological evaluation, standard of care for many pediatric survivors, but survivors were more than five times more likely to be retained in grade compared with the national retention rate. When obtained, parents reported that the neuropsychological consultation and associated report were helpful in increasing their own understanding and addressing barriers to obtaining adequate supports for their children. CONCLUSION: Given the important role of neuropsychological evaluation for survivors and their families, bringing referral rates more in line with national guidelines represents a critical target for oncologists. With adequate training in relevant issues, the oncologist is positioned to be a key support to survivors and their families in ensuring access to neuropsychological services and reducing barriers to an appropriate education.