Care Plans Help Cancer Patients Navigate Survivorship

Roxanne Nelson

August 28, 2013

Care plans that provide cancer survivors with a "customized road map" for life after the completion of active treatment have been recommended by the Commission on Cancer and the Institute of Medicine (IOM).

But do survivors find them helpful?

Yes, say the majority of survivors who participated in a first-of-its kind study in which the ability of care plans to equip patients to meet post-treatment goals was evaluated.

When the researchers surveyed survivors who used the LIVESTRONG Care Plan, the vast majority (93%) reported that the information provided was "good" to "excellent."

In addition, 65% reported that their care plan provided new information that they had not received from their practitioners, and 94% said they would recommend it to others.

The study was published online August 6 in Cancer.

"Cancer patients are at risk of falling through the cracks," said lead author Christine Hill-Kayser, MD, assistant professor of radiation oncology at the Abramson Cancer Center, University of Pennsylvania, in Philadelphia. "By providing them with resources in the form of a written document, a survivor is able to take more control of his or her care."

"Its not feasible for every provider to write up a care plan for ever cancer patient," Dr. Hill-Kayser told Medscape Medical News. But with online tools, "it is possible."

She pointed out that even though the study only looked at feedback from patients, feedback from providers has been very positive. "I hope this study helps facilitate the use of care plans for survivors, because I think they are very useful," she noted.

No Data on Impact

Survivorship care plans were first formally described in 2005 by the IOM, and will become a requirement for institutional reaccreditation by the Commission on Cancer in 2015. According to the IOM, care plans should help improve communication between practitioners and survivors and provide survivors with information on topics such as the possible late and long-term effects of cancer and its treatments, age-appropriate healthcare, and the social, economic, and emotional impacts of a cancer diagnosis.

To date, no published data have evaluated whether care plans actually achieve these goals.

To do so, Dr. Hill-Kayser and colleagues surveyed users of the LIVESTRONG Care Plan, which was launched on the University of Pennsylvania's OncoLink Web site in 2007. It is the most widely used care-plan tool; to date, more than 29,000 patients and healthcare providers have used the personalized tool.

The reserachers point out that the care-plan tool was developed to address specific types of treatment and primary cancer diagnoses, is evidence- or consensus-based whenever possible, and follows guidelines from major organizations, including the Children's Oncology Group, the National Cancer Institute, and the American Society of Clinical Oncology.

However, healthcare providers can individualize the care plan for a specific patient, Dr. Hill-Kayser pointed out. "They don't have to, but that is an option."

Generally Helpful and Informative

Among the survivors who used the care-plan tool from May 2010 to January 2013, the most common cancers were breast (45%), hematologic (12%), and gastrointestinal (11%). Of these 8690 survivors, 875 (10%) provided electronic contact information; of these, 298 (34%) responded to a 1-month follow-up survey.

These 298 individuals were similar to the group as a whole in terms of sex, site of cancer, and follow-up care provider (oncologist or primary care physician).

When asked about the care plan, 62% of respondents said that it provided "just enough information," 27% said that it "could use more information," 4% said that it didn't provide enough information, and 2% said that it provided too much information.

The majority of respondents (72%) felt that the emotional impact of the plan was limited to making them feel more informed as survivors. Overall, 7% said they felt empowered, 1% felt confused, and less than 1% felt overwhelmed or scared by the information.

Many (61%) reported that the care plan changed the way they participated or planned to participate in their own healthcare. Specifically, they said it prompted them to "be more active and more likely to discuss concerns with their healthcare team."

At the time of the survey, 25% of survivors had shared the plan with a member of their healthcare team (32% with a primary care provider, 43% with an oncologist, and 20% with a nurse or nurse practitioner). Of those, 80% said that the plan had helped to improve communication between themselves and their providers.

When respondents were asked about the plan's impact on their lives, 92% reported that it increased their awareness of the possible long-term and late effects of their cancer. More than half (54%) said that they had made or planned to make lifestyle changes as a result of the care plan, and 80% said that it had improved communication.

This project was supported by institutional funds, with support from an educational grant from the LIVESTRONG Foundation. The authors have disclosed no relevant financial relationships.

Cancer. Published online August 6, 2013. Abstract

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