With modern therapies and supportive care, survival of childhood cancer has increased considerably. Patients who have survived cancers involving the central nervous system or who have received therapy toxic to the developing brain are at risk of long-term neurocognitive sequelae. Negative outcomes are observed most frequently in survivors of acute lymphoblastic leukemia and brain tumors. The Children's Oncology Group Long-term Follow-up Guidelines Task Force on Neurocognitive/Behavioral Complications After Childhood Cancer has generated risk-based, exposure-related guidelines designed to direct the follow-up care of survivors of pediatric malignancies based on a comprehensive literature review and expert opinion. This article expands on these guidelines by reviewing the risk factors for the development of neurocognitive sequelae and describing the expected pattern of these disabilities. We herein present recommendations for the screening and management of neurocognitive late effects and outline important areas of school and legal advocacy for survivors with disabilities. Finally, we list resources that can guide patients, their parents, and their medical caregivers as they face the long-term neurocognitive consequences of cancer therapy.

Background This review was conducted to update the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines (COG-LTFU Guidelines; version 4.0) regarding screening for psychosocial late effects of pediatric cancer. Procedure Articles published between August 2009 and January 2011 that addressed psychosocial late effects of long-term survivors of pediatric cancer (n = 35) were reviewed by a multidisciplinary team of COG late effect experts. Results The majority of studies in this time period indicate that survivors experience few psychosocial problems in long-term survivorship. A critical subset, however, are at increased risk for psychosocial late effects secondary to treatment. Highlighted findings from this review include increased rates of suicidal ideation (SI), and health beliefs as robust predictors of SI, anxiety, and global distress. Survivors’ health beliefs were associated with their perceptions of physical limitations, overall late effects, and cancer-related pain. While many survivorship studies continue to specify risk factors for anxiety and post-traumatic stress symptoms (PTSS)/disorder (PTSD), others outcomes (e.g. developmental, interpersonal, and familial factors) appear to be emerging in importance. Conclusions Although the majority of childhood cancer survivors do not experience psychosocial problems, a subset will. The recent research findings have been included in the new COG-LTFU guidelines that will assist in the targeted assessment and treatment of survivors’ psychosocial health.

This study investigated the late effects of childhood cancer on participation and quality of life. Ninety-two percent of survivors (9 to 18 years of age) reported living with late effects of lower extremity pain and numbness, memory and attention deficits, and fatigue, depression, or both. Semistructured interviews with 25 survivors using the Canadian Occupational Performance Measure and the Adolescent Activity Card Sort captured frequencies, interests, and barriers for a range of activities. Survivors reported diminished engagement in vigorous leisure activities, chores, and community activities. Lower engagement in social activities was correlated with lower quality of life scores, as measured by the Pediatric Cancer Quality of Life Inventory-32. Despite these findings of significant cognitive and physical problems, none of the 25 survivors had individualized education programs in school, nor were any receiving occupational therapy at the time the survey was completed. The findings emphasize the importance of advocacy for occupational therapy services for survivors of childhood cancer and examination of adolescent survivor participation in, and goals for, typical activities.

As we move into the 21st century, we are faced with an increasing number of childhood cancer survivors who are living into their middle adult years and beyond. Providing appropriate, comprehensive follow-up care is a challenge for health care providers and one that can be met by developing quality follow-up programs for all childhood cancer survivors. The focus of these programs should be to educate these survivors on strategies to maximize their health and well being. This article discusses the evolution of survivor clinics, strategies for developing a quality program, and the role of nursing in the care of childhood cancer survivors.