SAN ANTONIO - The 2005 Institute of Medicine report calling for all cancer patients to be discharged with a survivorship care plan has spurred cancer centers across the country to develop survivorship templates. Speaking at the 2009 Oncology Nursing Society Congress, Carolyn Vachani, RN, MSN, AOCN, of the University of Pennsylvania Health System in Philadelphia, described the effort she led to develop an online survivorship care plan. The program, called Oncolife,
http://www.oncolink.com/oncolife/ is available at OncoLink, a cancer information website run by the
Abramson Cancer Center of the University of Pennsylvania http://penncancer.org/.
The development team focused on the late medical effects of cancer “in order to get the program off the ground,” Ms. Vachani said. The goal was to develop a program that would be free of charge, easy to use, and written for the layperson. After a development process of about a year, the program was launched in April 2007. The plan undergoes quarterly reviews, to make changes based on user feedback and to incorporate new knowledge.
The OncoLife survey, which asks for information on the patient’s cancer and treatment, can be completed by the patient or a health care provider, usually a nurse. The program then generates an individualized survivorship care plan.
The plan provides the patient’s risk of recurrences and second cancers and need for screening; potential long-term adverse effects broken down by surgery, chemotherapy, and radiation effects; tips to reduce risk (such as smoking cessation) or cope with the problem if the risk can’t be reduced; methods the patient and primary care physician can use to monitor for problems; and the type of symptoms the patient needs to report to the doctor.
“Some cancer survivors think every symptom might be cancer and they report everything, but at the other extreme are patients who have been through so much that they say, ‘Oh, this little side effect doesn’t seem important,’ and may not report an important symptom,” Ms. Vachani said.
She emphasized that the plan is not meant to replace a discussion with the patient’s physicians but rather is intended to be used as a discussion tool with the oncology team.
After 2 years in operation, OncoLife has created almost 5000 survivorship care plans, Ms. Vachani reported. Almost three-quarters (73%) of users are female.
To date, almost half (48%) of OncoLife users were breast cancer survivors, although they account for only 24% of survivors nationwide. “This is not a huge surprise because breast cancer patients are known to be information seekers,” she said.
Hematologic cancer patients came in second at 12%, even though they comprise only 8% of the US cancer survivor population. “These are people who receive a lot of therapies and are at fairly high risk of long-term effects,” she said.
The big fall-off was in prostate cancer patients, who make up 20% of US cancer survivors but only 9% of OncoLife users (as part of the genitourinary category that also includes bladder and kidney cancer). Among the users, 65% are survivors, 12% family and friends, and about 23% are health care providers. Among the health care providers, 80% are nurses. “It’s an obvious fit for us, since patient education is a primary nursing goal,” Ms. Vachani said.
The survey takes an average of only 6 to 7 minutes to complete. “This is important because it is something we can usually fit into our busy clinic practices,” she said.
The OncoLink website and the
Lance Armstrong Foundation (LAF)http://www.livestrong.org/site/c.khL....BCED/Home.htm have recently entered into a collaborative agreement. “The [program’s] name will change to the LiveStrong Care Plan and will be available through both the OncoLink and LAF websites,” Ms. Vachani said.
Hopeful
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