Increasing Rates of Breast Cancer and Cardiac Surveillance Among High-Risk Survivors of Childhood Hodgkin Lymphoma Following a Mailed, One-Page Survivorship Care Plan

Background. Hodgkin lymphoma (HL) survivors face substantially elevated risks of breast cancer and cardiovascular disease. They and their physicians are often unaware of these risks and surveillance recommendations. Procedure. A prospective one-arm study was conducted among a random sample of 72 HL survivors, ages 27-55 years, participating in the Childhood Cancer Survivor Study (CCSS) who were at increased risk for breast cancer and/or cardiomyopathy and had not had a screening mammogram or echocardiogram, respectively, within the prior 2 years. A one-page survivorship care plan with recommendations for surveillance was mailed to participants. In addition, survivors' primary physicians were contacted and provided patient-specific information and a web-based Virtual Information Center was made available for both survivors and physicians. Outcomes were assessed by telephone 6 months after the intervention. Results. The survivor participation (62/72; 86%) and 6-month retention (56/61; 92%) rates were high. Tension and anxiety, measured by the Profile of Mood States, did not increase following risk notification; 91% of survivors described their reactions to receiving the information in positive terms. At 6 months, 41% of survivors reported having completed the recommended mammogram; 20% reported having an echocardiogram (females 30%, males 10%). Only 29% of survivors visited the website. Nine physicians enrolled, and none used the study resources. Conclusion. A mailed, personalized survivorship care plan was effective in communicating risk and increasing compliance with recommended medical surveillance. Internet-and telephone-based strategies to communicate risk were not utilized by survivors or physicians. Pediatr Blood Cancer. 2010;56:818-824. (c) 2010 Wiley-Liss, Inc.