First Report of Worldwide Use of Internet-Based Survivorship Care Plans by Lung Cancer Survivors

Abstract

BackgroundIn the past 3 decades, the number of cancer survivors has more than tripled (MMWR, 2004). Although long-term success in the treatment of lung cancer remains limited, lung cancer survivors remain an important subset of the survivor population and might be at risk for late effects resulting from treatment and disease processes. Multiple groups have shown survivor care to be inadequate, and the Institute of Medicine has identified a need for survivorship care plans (SCPs) for all cancer survivors. Here, we describe for the first time use patterns of the first personalized Web-based SCP by lung cancer survivors. Patients and MethodsA program for creation of SCP, OncoLife, was made publicly accessible through OncoLink (available at: http://www.oncolink.org), a Web site serving over 3.9 million pages per month to 385,000 unique IP addresses (August 2007) and based at the University of Pennsylvania. Data was maintained anonymously and securely, and collection and analysis processes were reviewed by the institutional review board. 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. ResultsFrom May 2007 to May 2008, 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 (range, 18–100 years), and median current age was 51 years (19 to > 100 years). Users were 86% white and 71% female. Lung cancer survivors comprised 5% (n = 113) of the population of OncoLife users. Lung cancer survivors were 51% female and 93% white. Chemotherapy was delivered to 75% of patients with lung cancer, with platinum- and paclitaxel-based agents being the most common drugs used (93% and 57%, respectively). Radiation was used in the treatment of 57% of lung cancer survivors and surgery in treatment of 38%. Most lung cancer survivors (84%) reported receiving follow-up care from a dedicated oncologist, although only 36% reported being followed by a primary care provider (PCP). Only 10% reported receiving survivorship information at the conclusion of therapy. ConclusionsOncoLife represents the first Web-based program for creation of SCP, and patients, family members, and healthcare providers appear willing to use this type of tool. Most lung cancer survivors have received multimodality care, placing them at risk for treatment-related late effects. Most survivors do not report receiving routine care from a PCP, so attention to survivor healthcare needs by the oncology community is particularly important. Future versions of OncoLife will strive for increased accessibility and use in this underrepresented population.