The late neurocognitive and psychosocial effects of treatment for pediatric brain tumor (PBT) represent important areas of clinical focus and ongoing research. Neurocognitive sequelae and associated problems with learning and socioemotional development negatively impact PBT survivors’ overall health-related quality of life, educational attainment and employment rates. Multiple factors including tumor features and associated complications, treatment methods, individual protective and vulnerability factors and accessibility of environmental supports contribute to the neurocognitive and psychosocial outcomes in PBT survivors. Declines in overall measured intelligence are common and may persist years after treatment. Core deficits in attention, processing speed and working memory are postulated to underlie problems with overall intellectual development, academic achievement and career attainment. Additionally, psychological problems after PBT can include depression, anxiety and psychosocial adjustment issues. Several intervention paradigms are briefly described, though to date research on innovative, specific and effective interventions for neurocognitive late effects is still in its early stages. This article reviews the existing research for understanding PBT late effects and highlights the need for innovative research to enhance neurocognitive and psychosocial outcomes in PBT survivors.

Background: Traditionally, physicians have believed that limb‐salvage surgery has functional and cosmetic advantages over amputation, yet the literature is equivocal. Therefore, we sought to compare the psychosocial and functional outcomes in osteosarcoma survivors after limb‐salvage surgery and amputation. We hypothesized there to be neither psychosocial nor functional outcome differences between groups.Procedure: Participants received treatment of extremity osteosarcoma, had received their cancer diagnosis at least 2 years prior, and were at least 16 years old. A comprehensive set of validated psychosocial and functional measures was used to assess outcome.Results: Fifty‐seven patients participated in this study (33 who underwent limb‐salvage surgery and 24 who underwent amputation). Participants had gone 12–24 years since diagnosis and were 16–52 years old at study participation. We used multiple linear regression models to examine differences in quality of life, body image, self‐esteem, and social support between the two groups and found no differences. Lower limb function was a significant predictor of quality of life (P < 0.001), whereas surgery type did not impact this relationship. Body image was rated significantly worse by those who underwent late amputation, amputation after failed limb salvage, than by those who did not.Conclusions: Participants with more functional lower limbs had better quality of life than did those with less functional lower limbs regardless of whether they underwent amputation or limb‐salvage surgery. Pediatr Blood Cancer 2010;54:990–999

This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.

Background: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider’s perspective. Bereaved parents can inform the education of oncologists and the interdisciplinary team by sharing their perceptions and preferences through personal narratives. Methods: The aim of this project was to enhance the healthcare teams’ understanding of bereaved parents’ end-of-life care preferences through narratives. Bereaved parents were recruited from our institution’s Pediatric Supportive Care Committee membership. Parents were tasked with identifying elements of care that were of the greatest importance to them, based upon their personal experiences during their child’s end-of-life care. Narratives were analyzed using standard qualitative methods. Results: Parents of five patients participated, including four mothers and three fathers. Ten themes summarizing essential elements of end-of-life care were identified, including early ongoing and stepwise prognostic disclosure, honoring the child’s voice, support of hope and realism, anticipatory guidance on dying, and continued contact with the bereaved. Conclusion: Bereaved parents emphasize the need for providers to have ongoing honest conversations that support realism and hope that can help them to best prepare for their child’s end of life and to remain in contact with them after death.