care plans have been recommended by the Institute of Medicine for all
cancer survivors. We implemented an Internet-based tool for creation of
individualized survivorship care plans. To our knowledge, this is the
first tool of this type to be designed and made publicly accessible.
Objective: To investigate patterns of use and satisfaction with an Internet-based tool for creation of survivorship care plans.
an Internet-based program for creation of survivorship care plans, was
designed by a team of dedicated oncology nurses and physicians at the
University of Pennsylvania. The program was designed to provide
individualized, comprehensive health care recommendations to users
responding to queries regarding demographics, diagnosis, and cancer
treatments. After being piloted to test populations, OncoLife was made
publicly accessible via Oncolink, a cancer information website based at
the University of Pennsylvania which averages 3.9 million page views
and over 385,000 unique visits per month. Data entered by anonymous
public users was maintained and analyzed.
Results: From May
2007 to November 2008, 3343 individuals utilized this tool. Most (63%)
identified themselves as survivors, but also health care providers
(25%) and friends/family of survivors (12%). Median age at diagnosis
was 48 years (18 - 100+), and median current age 51 (19 - 100+). Most
users were Caucasian (87%), female (71%), and college-educated (82%).
Breast cancer was the most common diagnosis (46%), followed by
hematologic (12%), gastrointestinal (11%), gynecologic (9%), and
genitourinary (8%). Of all users, 84% had undergone surgery, 80%
chemotherapy, and 60% radiotherapy. Half of users (53%) reported
receiving follow-up care from only an oncologist, 13% only a primary
care provider (PCP), and 32% both; 12% reported having received
survivorship information previously. Over 90% of users, both survivors
and health care providers, reported satisfaction levels of good to
excellent using this tool.
Conclusions: Based on our
experience with implementation of what is, to our knowledge, the first
Web-based program for creation of survivorship care plans, survivors
and health care providers appear both willing to use this type of tool
and satisfied with the information provided. Most users have never
before received survivorship information. Future iterations will focus
on expanding accessibility and improving understanding of the needs of
cancer survivors in the era of the Internet.