Transitioning Survivors of Central Nervous System Tumors: Challenges for Patients, Families, and Health Care Providers

Abstract

Survivors of central nervous system tumors (SCNST) are a growing group of cancer survivors who require risk-based, long-term health care due to the chemotherapy, surgery, and radiation they have received.Although treatment strategies are being developed to reduce morbidity and mortality, ultimately this subgroup of pediatric cancer survivors often faces moderate to severe late effects of their treatment.As a result, they will need lifelong health care that includes risk-based health care due to cancer treatment exposures as well as primary adult health care, including primary and secondary preventative care. The best way to accomplish lifelong health care for SCNST as they enter adulthood is not clearly defined. In this article, the authors plan to (1) present an overview of the complexities of health care problems that make transition challenging for SCNST; (2) review the evolving transition literature; (3) explore the barriers to successful transition; (4) discuss methods to facilitate transition; (5) describe approaches, strategies, and models for survivorship care in SCNST; (6) present issues for consideration when transitioning SCNST; and (7) provide information on transition-related resources.

Evaluation of the Utility of a Transition Workbook in Preparing Adolescent and Young Adult Cancer Survivors for Transition to Adult Services

“…The developmental maturation of young adult childhood cancer survivors should be considered when introducing their transition to adult health care providers who will be assuming the responsibility for their care. However, many challenges exist in the successful transition of this population (Bashore, 2011; Eshelman-Kent, Gilger, & Gallagher, 2009). Young adult survivors may not disclose their disability.…”

“…They may not be able to maintain compliance because of being used to pediatric providers (and parents) taking care of their needs. Survivors of central nervous system tumors have many challenges to independence including many physical and cognitive disabilities they acquire due to cancer treatment (Eshelman-Kent et al, 2009).…”

A Collaborative Step-Wise Process to Implementing an Innovative Clinic for Adult Survivors of Childhood Cancer

“…Study participants identified a treatment summary and access to the guidelines as essential tools in caring for survivors, however only 28% of providers had received this information (Suh et al, 2014). This poor communication can result in ASCC receiving inadequate follow-up (Eshelman-Kent et al, 2009).…”

“…This same study found pediatric oncologists' comfort level with caring for survivors decreases as survivors age yet the healthcare providers still preferred to follow their patients for as long as possible . Transition of care is further complicated by the bond oncologists form with their patients or a belief that adult providers will not be able to provide an equal level of care (Eshelman-Kent, Gilger, & Gallagher, 2009). This creates a challenge for survivors who may find themselves caught between several providers, none of whom are able to provide the comprehensive care necessary for their complex medical needs.…”

“…When asked if cancer treatment could lead to a serious health condition in the future, only 35% of participants responded appropriately (Kadan-Lottick et al, 2002). Neurocognitive deficits may also impact a survivor's understanding of the severity of late effects as well as the importance of follow up care (Eshelman-Kent et al, 2009).…”