With the number of survivors growing, cancer survivorship has become a national public health priority, especially for childhood cancer survivors. Pediatric cancer therapies are highly successful with overall cure rates of 75-80%. With cure in this young population, there is preservation of decades of life after cancer and with that quality of life and absence of late effects are central concerns in the long term care of these patients. Survivorship care aims to educate and empower survivors to seek lifelong individualized surveillance and treatment for late effects in order to improve quality and length of life. However, high quality, individualized survivor care is challenging due to: 1) multiple transitions in care to various primary and specialty care providers;and 2) lack of knowledge about survivor issues among both providers and patients/families. This project aims to address these challenges by building SurvivorLink, an IT system designed to support pediatric cancer survivor care. The SurvivorLink system will serve as a personal health record (PHR) for pediatric cancer survivors which includes a cancer treatment summary, individualized risk profile, individualized late effects screening profile, and other clinical information needed to provide high-quality care for survivors in the long term. In addition, educational materials will be provided to improve awareness of survivorship issues and best practices in survivor care. SurvivorLink has three target user groups: patients/families, providers, and researchers. For this pilot study, patient/family and provider participants will be recruited through the five (5) cancer treatment centers in the State of Georgia: Atlanta, Augusta, Columbus, Macon and Savannah, and through the records from the Georgia Comprehensive Cancer Registry (GCCR). Patients will be recruited to match the diversity of the state, which is racial/ethnically-diverse children (34% non-white), 30% of which reside in rural areas, 20% who are below the poverty level, and 42% either who have no health insurance coverage or are on Medicaid. The impact of SurvivorLink will be evaluated by measuring outcomes related to both SurvivorLink utilization and the impact SurvivorLink utilization has on aspects of survivor care like patient and provider awareness of survivor issues and percentage of patients receiving recommended survivor care.

Public Health Relevance

; Children who survive after the diagnosis of cancer have very complex medical needs (Hewitt, 2003;Oeffinger, 2004). It is anticipated that use of SurvivorLink will improve provider and patient/family awareness of survivor health issues, and improve patient and provider access to comprehensive information on evidence-based screening recommendations. This system will also provide a foundation for innovative population-based research on late effects by providing more complete longitudinal data on these patients.

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Research Demonstration and Dissemination Projects (R18)
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Special Emphasis Panel (ZHS1-HSR-A (01))
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Mabry-Hernandez, Iris Renee
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Emory University
Schools of Medicine
United States
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Williamson, Rebecca S; Cherven, Brooke O; Gilleland Marchak, Jordan et al. (2017) Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors. Appl Clin Inform 8:250-264
Williamson, Rebecca; Meacham, Lillian; Cherven, Brooke et al. (2014) Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: Cancer SurvivorLinkā„¢. J Cancer Surviv 8:355-63