Supporting Long-Term Follow-up Care for Survivors of Childhood Cancer

DESCRIPTION

Care for childhood cancer is improving. Because of treatment advances, more than 80 percent of children with cancer become long-term survivors, resulting in 375,000 survivors aged 20-39 in the United States. Unfortunately, serious health risks persist for these survivors even after successful treatment. About 70 percent of adolescents and young adults (AYA) who survive childhood cancers develop new forms of cancer, debilitating chronic conditions, or serious and sometimes life-threatening residual effects from cancer treatment.

For these reasons, experts strongly recommend long-term follow-up care for all AYA survivors of childhood cancer. However, evidence shows this important engagement often wanes considerably as childhood cancer survivors age, potentially exposing them to dangerous diagnostic delays and lower-quality overall care. This trend often goes hand in hand with poor self-management skills related to handling issues like scheduling appointments or any relevant symptoms that may occur. Only 35 percent of AYA people who survived cancer as children are aware that they continue to face substantial health risks following their course of treatment.

Through a five-year study, a team of researchers is working to help clinicians better understand and strengthen the critical connections between these patients and their care teams. The team is evaluating tools designed to predict the readiness of AYA survivors of childhood cancer—a historically understudied population—to successfully manage their own health and transition from pediatric to adult-focused follow-up care. Supported by a grant from the National Institute of Nursing Research, this large-scale investigation assesses 600 AYA childhood cancer survivors. Researchers will develop and improve assessment methodologies and identify factors that impact this population’s ability or willingness to engage in effective long-term care. The study’s ultimate goal is to inform strategies and interventions that ensure this vulnerable population is properly prepared and equipped for the long haul, and can enjoy optimal care and well-being throughout their lives.

IMPACT

The study includes a cohort of 600 survivors across three sites (Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center, and Children’s Hospital Los Angeles). To our knowledge, this is the largest prospective study to date of adolescent and young adult survivors of childhood cancer.

PEOPLE

Lisa A. Schwartz, PhD

FUNDING

National Institute of Nursing Research

MEDIA

Researchers Study How To Enhance Self-management of Survivors of Childhood Cancer, CHOP Cornerstone Blog

FOCUS

Clinical Transformation

By Scott Harris