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

• Authors: Kevin C. Oeffinger, Memorial Sloan-Kettering Cancer Center; Melissa M. Hudson, St. Jude Children’s Research Hospital; Ann Mertens, Emory University; Stephanie M. Smith, Stanford University; Pauline A. Mitby, Children’s Hospitals and Clinics of Minnesota; Debra A. Eshelman-Kent, Cincinnati Children's Hospital; Jennifer S. Ford, Memorial Sloan-Kettering Cancer Center; Judith K. Jones, Degge Group, Ltd; Sharmila Kamani, Degge Group, Ltd; Leslie L. Robison, St. Jude Children’s Research Hospital
• Journal Title: Pediatric Blood and Cancer
• Volume: Volume 56, Number 5
• Publisher: Wiley: 12 months | 2011-05-01, Pages 818-824
• Type of Work: Article | Post-print: After Peer Review
• Publisher DOI: http://doi.org/10.1002/pbc.22696
• Subjects: Health Sciences, Oncology; Health Sciences, Medicine and Surgery; Health Sciences, Health Care Management
• Keywords: Science & Technology; Life Sciences & Biomedicine; Oncology; Hematology; Pediatrics; cancer survivor; late effects; survivorship care plan; LONG-TERM SURVIVORS; ADULT SURVIVORS; CHEST RADIATION; MEDICAL-CARE; SHARED CARE; UP CARE; PHYSICIANS; INTERVENTION; BEHAVIORS; OUTCOMES

Abstract

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.