Improving Pediatric Cancer Survivorship Care Through SurvivorLink

Major advances in pediatric cancer therapy are helping children with these diagnoses to live longer. Pediatric cancers and their treatment, however, predispose survivors to a higher risk of certain life-threatening and debilitating diseases, known as “late effects of cancer treatment.” Therefore, survivors need life-long medical monitoring and care. A number of barriers to this care have been identified including a lack of knowledge about late effects of cancer treatment and individualized risk for specific late effects, as well as a lack of availability of or knowledge about appropriate cancer survivor followup programs. There is thus a need to provide patients, their families, and their health care providers with knowledge and tools in order to ensure that these patients receive optimal care.        

This project built and evaluated SurvivorLink, an information technology (IT) system available via the Web. The system provides information on the life-long health care needs of childhood cancer survivors, with a goal of increasing awareness and knowledge among survivors, their families, and their care team. In addition, SurvivorLink promotes communication between these three groups through the use of an electronic personal health record maintained by the patient and shared with their providers.                      

The specific aims of this project were to:

• Collect data on pediatric cancer survivors in SurvivorLink.
• Facilitate the exchange of clinical information at key transitions. 
• Provide patients with easy access to individualized educational materials and evidence-based late-effects screening recommendations.
• Provide researchers with longitudinal information on incidence of late effects in pediatric cancer survivors.           

The project used a mixed-methods study design to assess the needs of clinicians, parents, and young survivors. This included structured interviews with providers; focus groups with parents and young adult cancer survivors; analysis of SurvivorLink system data and logs; and administration of participant surveys.

The study confirmed that there is insufficient knowledge regarding the importance of cancer survivorship care among survivors, their parents, and their health care providers. As participants were educated, registration to SurvivorLink increased, as did participant use of the site. It became evident during the study that refining education and recruitment strategies for the system are necessary. The project team plans to promote the use of SurvivorLink to primary care providers by utilizing current collaborations, IT expertise, and relationships with professional groups.