Adolescent and young adult use of Internet-based cancer survivorship care plans.

Abstract

9117 Background: Adolescent and young adult (AYA) cancer survivors are a unique subset of the survivor population. Data suggest that most use the Internet for cancer information, seeking information on late effects, nutrition, exercise, and infertility, but 25-50% report an unmet need for information (Zebrack, 2007). Methods: In 5/07, we launched an Internet-based tool for creation of survivorship care plans (SCP). The care plan tool is available at www.livestrongcareplan.org, and via OncoLink, a cancer information website based at the University of Pennsylvania, serving over 3.9 million pages/ month to 385,000 unique IP addresses. The tool allows users to enter information regarding demographics, diagnosis, and treatment, and produces customized SCP that include guidelines for future care, as well as information on late effects, fertility, and age-appropriate screening. All information is provided by oncology nurses and physicians, and data collection is IRB approved. Results: Between 5/07 and 12/09, 9271 SCP were completed. Of these, 16% (1477) were for AYA survivors, of ages 18-39 (median 30). This group was 69% female and 81% Caucasian, with diagnoses most commonly of breast cancer (32%), lymphoma/leukemia (28%), and testicular cancer (8%); 84% reported treatment with chemotherapy, 75% surgery, and 54% radiation. 52% reported receiving current care from only an oncologist, 14% only a primary care provider, and 30% both. 14% reported receiving survivorship information previously. Of female users, 32% reported being unsure of whether menses would resume, and 17% had undergone treatment-induced menopause. The tool provided a “good” to “excellent” experience to 91% of AYA users, and 89% reported “good” to “excellent” satisfaction with information provided. Conclusions: AYA survivors represent a prominent group of users of this Internet SCP tool. Most have undergone multi-modality treatment, and may be at significant risk for late effects, including fertility issues as evidenced by many reporting treatment-related menopause. Most AYA are followed only by an oncologist, and have not received survivorship information previously. This population reports high-satisfaction with, and willingness to use, this type of tool. No significant financial relationships to disclose.