Transition of Care for Young Adult Survivors of Childhood and Adolescent Cancer: Rationale and Approaches

Abstract

A B S T R A C T PurposeYoung adult survivors of childhood and adolescent cancer are an ever-growing population of patients, many of whom remain at lifelong risk for potentially serious complications of their cancer therapy. Yet research shows that many of these older survivors have deficient health-related knowledge and are not engaging in recommended health promotion and screening practices that could improve their long-term outcomes. The purpose of this review is to address these disparities by discussing how formal transition of care from pediatric to adult-focused survivorship services may help meet the unique medical, developmental, and psychosocial challenges of these young adults. DesignLiterature review and discussion. ResultsThis article summarizes current research documenting the medical needs of young adult survivors, their suboptimal compliance with recommended follow-up, and the rationale, essential functions, current models, and innovative approaches for transition of follow-up care. ConclusionSystematic health care transition constitutes the standard of care for young adult survivors of childhood cancer. In developing a transitional care program, it is necessary to consider the scope of services to be provided, available resources, and other local exigencies that help determine the optimal model for use. Additional research is needed to improve health services delivery to this population. Effective advocacy is needed, particularly in the United States, to ensure the availability of uninterrupted health insurance coverage for survivorship services in young adulthood.

Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives

“…3,4 In the Childhood Cancer Survivor Study cohort of over 14,000 survivors, two thirds had at least one chronic condition (e.g., second malignancy, premature cardiovascular disease, endocrinopathy) 25 years postdiagnosis; 3,[5][6][7][8] about half develop a severe or disabling chronic condition. 2,9 Survivors are at increased risk of psychosocial distress (e.g., anxiety, depression, post-traumatic stress), and many have neurocognitive dysfunction.…”

“…7,[15][16][17][18] At different centers, LTF is offered during oncology clinic, on designated survivors' days in oncology clinic space, and in free-standing programs with their own space and staff. 19 Regardless of how it is structured, providing LTF is resource-intensive.…”

“…Institutions' capacities are strained by the number of childhood cancer survivors, expected to reach 500,000 in the United States by 2020. 5,7,[19][20][21][22] Elements of survivorship care are often transferred to community primary care providers (PCPs), but when and how these transfers occur vary across institutions. 16,19 Practically speaking, pediatric-trained clinicians cannot always manage adult survivors of childhood cancer, and survivors cannot conveniently return to the centers where their cancers were treated.…”

“…16,19 Practically speaking, pediatric-trained clinicians cannot always manage adult survivors of childhood cancer, and survivors cannot conveniently return to the centers where their cancers were treated. 3,7,[23][24][25] Care transitions are a major challenge for young people with complex health issues. Transition refers both to care transfers from one provider and/or setting to another and also to the processes through which adolescents and young adults take on responsibility for their own health and healthcare.…”

Adolescent survivor of childhood Acute Myeloid Leukaemia undertakes pregnancy with a severe anthracycline induced cardiomyopathy and risk taking behaviours

“…[27] It is widely acknowledged that transition of care is a top priority in ensuring ongoing health benefits to AYA patients. [28] It has been shown that dedicated, well structured transition models that include education to the AYA patient improve quality of life (QoL) health outcomes, Better health outcomes are probably observed because of the improvement in understanding of disease enabled by the education arms of the models, and improved compliance with clinic appointments facilitated by a model that continues to build patient and physician rapport. Despite the multiple benefits to the AYA patient seen with early transition programs, there are still multiple challenges in achieving smooth transition.…”