'Unrealistic Expectations' for Cancer Survivorship Care Plans

Roxanne Nelson, RN, BSN

February 21, 2018

ORLANDO, Florida — Cancer survivorship care plans (SCPs) have been broadly endorsed by professional and advocacy organizations, but are they meeting their mark?

Specifically, have SCPs been effective in improving survivorship care and outcomes?

They don't seem to be. A new study found minimal evidence of benefit from such plans — which record a cancer patient's medical history, details of treatment received, and plans for surveillance.

"We believe that the lack of evidence for survivorship care plans reflects unrealistic expectations about the impact on patient outcomes," said lead author Paul Jacobsen, PhD, associate director of the Healthcare Delivery Research Program in the Division of Cancer Control and Population Science, the National Cancer Institute (NCI).

"We need to shift research focus to delivery of survivorship care, of which care plans are just one component."

Jacobsen was speaking here at the Cancer Survivorship Symposium (CSS) Advancing Care and Research.

Time for a Reboot?

In a discussion of the paper, Sarah Birken, PhD, an assistant professor in the Department of Health Policy and Management at the Gillings School of Global Public Health, the University of North Carolina at Chapel Hill, echoed some of Jacobsen's concerns.

"The effectiveness of SCPs is inconclusive based on the trials that have been done, because of the outcomes they have assessed," she said.

The question that needs to be addressed right now, Birken noted, is whether the evidence presented will change the standard of care — that is "the elephant in the room regarding SCPs," she said.

"Should we be spending our scarce resources doing something for which the evidence is so limited?" she questioned.

Although SCPs aren't doing a lot of harm, the cost of using them may be too high, "especially if they are implemented so variably and in a way that is unlikely to benefit key stakeholders," Birken noted.

The bottom line is that currently, it is unclear whether SCPs are effective. "We need to increase understanding through implementation research and stakeholder engagement," she said. "And we need to focus more on survivorship care and not SCPs."

Each Cancer Patients Should Have One

Interest in developing SCPs was spurred by a 2006 report from the Institute of Medicine (IOM) that discussed the development of posttreatment cancer survivorship clinics and services that would target the unique problems that cancer survivors face. One of the IOM's key recommendations was that every cancer patient receive an individualized SCP at or near completion of active treatment.

Although SCPs are recommended by the President's Cancer Panel and the IOM, the adoption of these plans has been limited.

"Only 43% of NCI-designated cancer centers deliver SCPs, and only 20% of oncologists routinely provide SCPs," Jacobsen pointed out. "In the community setting, it's even lower."

Barriers to the use of SCPs include time constraints, reimbursement, a lack of resources, and challenges to coordination. In addition, some prior research did not find evidence of a benefit, at least for some parameters.

Heterogeneity and Homogeneity

In their study, Jacobsen and his colleagues investigated the impact of SCPs on disease, care delivery, and patient-reported outcomes.

They conducted a systematic search of literature published through July 2017. A total of 13 randomized controlled trials and 11 nonrandomized trials met the inclusion criteria.

Jacobsen explained that for this presentation, he would focus only on the randomized trials.

"Most notable was the heterogeneity across trials," he said. "All of the trials included a treatment summary, but other than that, it was very hit or miss on SCP content."

More than half of the studies (n = 7) were conducted in breast cancer patients, two were mixed, and there was one study each in colorectal, endometrial, gynecologic, and prostate cancer patients.

The timing of the delivery of SCPs after treatment completion also varied across studies, with seven studies delivering them within 1 year, and six after a year had passed.

Only a minority of studies included information on late effects, healthy lifestyle advice, resources of survivorship and supportive care, and an assessment of symptoms and unmet needs, he pointed out.

"But the greatest heterogeneity was in the outcomes assessed," he said.

Quality of life was the most common patient-reported outcome. Six studies addressed some aspect of healthcare delivery, two assessed disease endpoints, and two evaluated economic endpoints.

"While there was heterogeneity in the design, there was unfortunately homogeneity in the outcome," Jacobsen said. "The findings were generally negative for SCPs having an impact on psychological, physical, and functional well-being."

Although eight studies reported on this endpoint, only one found that there was a significant result favoring care plans — patients who received an SCP reported less depression at mid-trial.

Findings were positive in five studies for other outcomes, which included the amount of information received, satisfaction with care, cancer-related contacts with a primary care physician, adherence to cardiomyopathy screening, and physician implementation of recommended survivorship care. There was one such finding per single study.

Why the Negative Results?

Jacobsen offered some possible reasons for the largely negative findings of his review.

One is that the SCPs were just not beneficial.

"A second reason was that there was not a clear distinction between proximal and distal outcomes," he said. "There may also be insensitive or inappropriate distal outcome measures."

Patient selection is another factor. Care plans may be more effective if the focus is on the higher-risk groups. Other reasons include problems with the timing of SCP delivery, inconsistent content, and, most importantly, the lack of focus on adoption of SCP recommendations.

"The goal should be to determine which form of survivorship care is best for which patient at what time," Jacobsen concluded. "None of these studies looked at risk-stratified approaches."

Dr Jacobsen has relationships with Carevive and Pfizer. Dr Birken has disclosed no relevant financial relationships.

Cancer Survivorship Symposium (CSS) Advancing Care and Research. Abstract 2, presented February 17, 2018.

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