Internet-Generated Survivorship Care Plans Are Convenient and Customized

TON - March 2017, Vol 10, No 2 - Survivorship
Wayne Kuznar

San Francisco, CA—Survivors of lower gastrointestinal cancers can successfully use Internet-based patient-reported outcomes tools to report late- and long-term effects of their cancer.

The need for quality follow-up care to optimize long-term outcomes for survivors in lower gastrointestinal cancer is significant, said Melissa Frick, BA, medical student, University of Pennsylvania, Philadelphia.

She and co-investigators gathered patient-reported data via convenience samples from 1129 survivors of colon, rectal, and anal cancer, using a publicly available, free Internet-based survivorship care plan tool (OncoLink) between May 2010 and October 2014. They examined patient-reported demographics, treatment, and toxicity data, and reviewed responses from a follow-up survey. Ms Frick reported their findings at the 2017 Gastrointestinal Cancers Symposium.

“There are a few survivorship care plans out there on the Internet. There’s Journey Forward and others offered through the National Comprehensive Cancer Network. OncoLink [www.oncolink.com/oncolife] is one of them, and, at least at Penn [University of Pennsylvania], it’s the one we refer our patients to. We advise them to find it at home, when they have the time,” said Ms Frick.

The survivorship care plan tool requires the patient to enter demographic information, treatments received, and the status of the disease (eg, living with cancer or being cancer-free). Based on the information entered, patients are then asked to complete a questionnaire of side effects.

“It’s all very customized to the primary tumor site; what treatments you’ve received; did you get chemo[therapy], and, if so, what types of chemo[therapy]; did you have surgery, and, if so, what type of surgery; and radiation, and, if so, to what site,” said Ms Frick.

Of the survivors included in the review, 792 were colon cancer survivors, 218 were rectal cancer survivors, and 119 were anal cancer survivors; 81% were white and 58% were women. The median age at diagnosis was 51 years, and median current age was 54 years.

Most patients reported receiving multimodal therapy; 60.4% of colon cancer survivors received surgery and chemotherapy, 72.0% of rectal cancer survivors received trimodal therapy, and 56.3% of anal cancer survivors received chemotherapy and radiotherapy.

The most frequently reported late- and long-term effects overall were neuropathy (65%), fatigue (56%), cognitive changes (49%), changes in gastrointestinal function (43%), sexual dysfunction (22% in men, 43% in women), and radiation-induced dermatologic effects, including changes in color/texture of skin (39%), and loss of flexibility in radiated areas (31%). Their prevalence varied with length of time since treatment and treatment modality. For instance, patients treated for anal cancer reported a high prevalence of age-adjusted sexual dysfunction (46% in men, 47% in women).

Once the patient reports his or her symptoms, the survivorship care plan is generated, prioritizing the plan based on these symptoms.

“Part of the intent is that the patient can print out the survivorship care plan and bring it to the healthcare provider,” said Ms Frick.

More than 87% of users reported satisfaction levels of “good” to “excellent,” and 69% reported that they intend to share the care plan with their healthcare team.

“We are at a point within OncoLink where we are trying to deliver the survivorship care plan through an electronic medical record interface. That, I think, is going to be the next step in innovation in terms of using this survivorship care plan and having providers see what their specific patients are experiencing. I think that has a lot of promise to change clinical practice…to use patient-reported outcomes,” Ms Frick said.

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Last modified: March 7, 2017