Cori Liptak

Late effects of therapy for pediatric brain tumor survivors.

Approximately 2 of every 3 of all pediatric patients with brain tumors will be long-term survivors. However, there is a steep cost for pediatric brain tumor survivors, and the group as a whole faces significantly more late effects than many other survivors of pediatric cancers. Most of these effects can be attributed to direct neurologic damage to the developing brain caused by the tumor and its removal, the long-term toxicity of chemotherapy, or the effects of irradiation on the central nervous system. The late effects experienced by childhood brain tumor survivors involve multiple domains. This article will review the significant late effects that occur within the medical, neurocognitive, psychosocial, and economic domains of the survivorship experience. We conclude by discussing how the late effects in different domains often coexist and can create a complex set of obstacles that pose significant challenges for a survivor of a pediatric brain tumor on a daily basis.

Medical, psychological, cognitive and educational late-effects in pediatric low-grade glioma survivors treated with surgery only†

Surgical resection is often the only treatment necessary for pediatric low‐grade gliomas (LGGs) and is thought to define a population with an excellent long‐term prognosis. The goal of this study was to describe the multidimensional late‐effects of pediatric LGG survivors treated exclusively with surgery.

Screening for pain in pediatric brain tumor survivors using the pain thermometer.

Numerous instruments have been developed to measure pain within various populations; however, there remains limited understanding of how these tools are applicable to childhood cancer survivors. This study compared a single-item screening measure, the Pain Thermometer (PT), with a more in-depth measure, the Brief Pain Survey (BPS), in a cohort of childhood brain tumor survivors. Ninety-nine survivors (aged 13-32 years) with a median time from diagnosis of 9.9 years (range = 2-18 years) completed the 2 instruments. Thirty-seven survivors (37.4%) were identified on the BPS as having clinically significant pain, but the PT was not found to be an accurate tool for identifying these pain cases. Application of receiver operating characteristic curve analysis of PT ratings against BPS criterion indicated overall concordance between measures. No cutoff score on the PT were identified that resulted in acceptable sensitivity, meaning pain cases identified on the BPS would be missed on the PT. Findings suggest that a multi-item screening measure may better identify clinically significant pain in childhood brain tumor survivors compared with a 1-item screening measure alone.

A social program for adolescent and young adult survivors of pediatric brain tumors: The power of a shared medical experience

ABSTRACT Survivors of pediatric brain tumors experience several medical and psychosocial late effects including deficits in social competence. This mixed methods study investigated the experience of 19 adolescent and young adult survivors of pediatric brain tumors and 17 parents who participated in a social support program. Qualitative results demonstrated a significant social isolation that was compounded by medical late effects. Survivors perceived social support and acceptance from interactions with peers who have similar medical backgrounds as a key aspect of the group experience. Parents reported increased social confidence among survivors, although they did not report that social gains generalized beyond the group setting. Interventions to promote the transfer of specific social skills are needed.

Psychosocial Care for Pediatric Cancer Survivors

Survivors of childhood cancer are a growing population that has complex medical, educational, psychological, and social needs that change over time based on age, developmental level, and societal expectations. While many childhood cancer survivors do not experience significant psychological distress, there are a number of challenges they face that can be associated with psychological symptoms which can negatively impact quality of life. Issues associated with education and learning, interpersonal relationships, and employment can be magnified when managing complex medical difficulties.

Psychological Challenges and Adaptation in Long-Term Survivors of Childhood Cancer

While the majority of childhood cancer survivors will have successful psychosocial adaptation after treatment, childhood cancer and its associated late-effects increase the risk for adaptive challenges and psychological symptoms later in life. In this chapter we focus on understanding the psychological and adaptive challenges that arise in this population in the areas of psychological symptoms, quality-of-life (QOL), and social adaptation. Risk factors for poor psychosocial and QOL outcomes, as well as high-risk survivor groups, and the role of professionals in identifying and addressing survivors with poor adaptive outcomes are also presented. Results of research studies, particularly studies of large cohorts of survivors are presented to frame the prevalence and types of problems common in this group, and information and case examples drawn from clinical experience are presented to complement this research and to illuminate the effects of cancer on individual survivors.