Utilization of internet-based survivorship care plans by breast cancer survivors.
Authors: Hill-Kayser CE , Vachani C , Hampshire MK , Jacobs LA , Metz JM 
Published: December 2010

Abstract #1122

Background: In the past three decades, the number of cancer survivors living in the United States has more than tripled (MMWR 2004). Survivors of breast cancer represent a large and important subset of this population, and remain at risk for late-effects such as heart disease and second malignancy (Harris 2006, Schaapveld 2008). Multiple groups have shown survivor care to be inadequate, and the Institute of Medicine has identified a need for survivorship care plans (SCP) for all cancer survivors. Here, we describe use patterns of the first personalized web-based SCP by breast cancer survivors.&#x2028; Methods: A program for creation of SCP, OncoLife , was made publicly accessible through OncoLink (www.oncolink.org), a website serving over 3.9 million pages/month to 385,000 unique IP addresses (Aug 2007) and based at the University of Pennsylvania. Data was maintained anonymously, and collection and analysis processes were reviewed by the institutional IRB. Users responded to queries regarding demographics, diagnosis, and treatment, and received comprehensive, individualized guidelines for future care addressing issues such as late toxicity, second malignancy, fertility, and tumor recurrence.&#x2028; Results: From 5/07-5/08, 2573 individuals completed OncoLife surveys. Users described themselves as cancer survivors (66%), family members/friends of survivors (12%) and healthcare providers (23%), and identified themselves as residents of 46 states and 15 countries. Median age at cancer diagnosis was 48 years (yrs) (range 18–100), and median current age 51 yrs (range 19– &gt;100). Breast cancer survivors composed 45% of the population of OncoLife users (n=1164), and were predominantly female (96%), Caucasian (97%), and well-educated, with 81% having education beyond high school. Median age at breast cancer diagnosis was 47 yrs (range 18–93), and median current age 51 yrs (range 19-94). Nearly all breast cancer survivors (97%) had undergone surgery, while 75% were treated with radiation, and 85% intravenous chemotherapy (most commonly cyclophosphamide, doxorubicin, and/or taxols). Hormonal treatments were delivered to 66% of survivors, and trastuzumab to 11%. Of breast cancer survivors, 56% described receiving follow-up care only from an oncologist, 12% only from a primary care provider, and 30% from both. Only 14% of breast cancer survivors reported having ever before been offered information on survivorship care.&#x2028; Conclusions: OncoLife represents the first web-based program for creation of SCP, and patients and healthcare providers appear willing to use this type of tool. Most breast cancer survivors have undergone multimodality care, placing them at risk for late-effects. Most do not receive formal survivorship care information after active cancer therapy, so attention to survivor needs by the oncology community is important. Future versions of OncoLife will focus on expanding healthcare provider and Spanish versions, and increasing accessibility to underserved populations.

Citation Information: Cancer Res 2009;69(2 Suppl):Abstract nr 1122.