Do We Have Unrealistic Expectations of Survivorship Care Plans?

July 2018 Vol 9, No 7



Existing research provides minimal evidence that survivorship care plans (SCPs) improve quality of life in cancer survivors, but according to Paul B. Jacobsen, PhD, from the National Cancer Institute (NCI), this lack of evidence might actually be due to heterogeneity across SCPs and the low likelihood that SCP delivery alone will influence health outcomes down the line.

In 2006, the Institute of Medicine recommended that at or near the time of completion of cancer treatment, all survivors should receive a summary record that includes important disease characteristics and treatment received, as well as a follow-up care plan incorporating available evidence-based standards of care. This treatment summary and follow-up care plan came to be known as the SCP.

“Since then we’ve seen that SCPs have been broadly endorsed,” he said at the ASCO Cancer Survivorship Symposium. “But the evidence suggests that adoption has been somewhat limited.” Only 43% of NCI-designated cancer centers and 20% of oncologists routinely provide SCPs. Cited barriers include lack of time and resources required to prepare these plans, as well as reimbursement and coordination challenges in the posttreatment period.

Another perceived barrier among providers is the limited evidence that SCPs actually improve survivor outcomes. Rather than relying on perceptions, he and his colleagues conducted a systematic review of published research to determine if SCPs have had a positive impact on health outcomes and healthcare delivery.

Status of SCP Adoption

Using MEDLINE, Embase, PsycINFO, and Cochrane Library, they identified 13 randomized and 11 nonrandomized studies that evaluated patient-reported outcomes, healthcare utilization, and disease outcomes after the delivery of SCPs. Dr Jacobsen presented data from the randomized studies only.

“Most notable was the heterogeneity across the studies,” he said. The largest number was in breast cancer (7), but relatively little attention was paid to other common cancers like colorectal (1) and prostate (1).

Significant variability was also evident across studies in regard to cancer diagnoses, timing of SCP delivery in relation to treatment completion, SCP delivery method and recipients, SCP content, SCP-related counseling, and outcomes assessed, he reported.

“But while there was heterogeneity in the designs, there was unfortunately homogeneity in the results of the studies,” he said. Findings were generally negative for the impact of SCPs on the most commonly assessed outcomes: psychological, physical, and functional well-being.

There were, however, more positive findings in the 6 studies that looked at healthcare-related issues. Five of the 6 studies reported a positive effect, in each case favoring patients who received SCPs.

Possible Explanations for Negative Findings

“Some might view these findings as suggesting SCPs are not beneficial and that their continued use is not justified, but our careful review suggests a much more nuanced interpretation,” he said.

Dr Jacobsen pointed out the need to distinguish between proximal and distal outcomes. Findings were more positive for proximal outcomes (things that occurred within the first year of treatment), but many of the studies utilized insensitive or inappropriate distal outcome measures. “The idea that a care plan delivered at one point in time will affect quality of life months or years later seems unrealistic,” he noted. “We need to look at more appropriate distal outcomes like adherence to recommended follow-up care and receipt of appropriate services.”

Patient selection should also be amended to include higher-risk populations, he said. “Perhaps we’d find a greater effect of SCPs if we looked at higher-risk groups, whether that’s defined in terms of treatment exposures or in terms of life circumstance.”

Timing and frequency of SCP delivery posed another problem. Although recommendations have been made that SCPs be updated over time, this was carried out in only 1 of the studies. But perhaps most important was the lack of focus on actually adopting and carrying out SCP recommendations, he said.

In light of these findings, Dr Jacobsen urges more focus on ensuring that SCP recommendations are actually implemented in the ongoing care of patients.

“We need to shift the research focus to the delivery of survivorship care, of which SCPs are just one component—a necessary component—but not a sufficient one for quality care,” he said. “The goal should be determining which form of survivorship care is best for which patient, at what time.”

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In 2005 the Institute of Medicine (IOM) issued a report recommending that every cancer patient receive an individualized survivorship care plan that includes guidelines for monitoring and maintaining their health. We discussed this topic with our Editor-in-Chief, Lillie D. Shockney, RN, BS, MAS, ONN-CG, to understand their purpose and contents, and the role of oncology professionals in their creation and dissemination.
Cite this Article
Journal of Oncology Navigation & Survivorship. 2018;10:282.
Last modified: July 6, 2018

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