Making Progress in Survivorship Care Planning

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Mary McCabe, RN, MS

Let’s remember that, ultimately, it’s not about the document or piece of paper. It’s about the conversation between the oncologist and the patient and ongoing communication between the health-care providers.

—Mary McCabe, RN, MS

The recommendation that a survivorship care plan be provided to patients and their primary care providers was first presented in the 2006 Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition. The IOM committee proposed that this document include two parts—a summary of cancer treatment along with a plan for follow-up care. Since that time, there has been much discussion and debate at meetings and in the literature about the elements to be included in each of these components, when they are to be prepared, by whom, and, most importantly, whether there is value in their use.

Lack of Evidence

Although many groups acknowledge that the concept of a survivorship care plan as a useful communication tool has face value, there are limited data demonstrating their impact on improving the care and/or health outcomes of cancer survivors. In fact, there are studies concluding that they are not useful in achieving specified endpoints. For example, the 2011 study published in the Journal of Clinical Oncology by Grunfeld et al1 found that the provision of a survivorship care plan did not result in a reduction in cancer-related distress in survivors.

Before assuming that there is convincing evidence for the impact of these often lengthy documents that are time-consuming to complete, it may be wise to divide the analysis of this issue into parts. In assessing whether the survivorship care plan is an effective communication tool, we should look at answering process questions, as well as outcome questions, as a way of making true progress.

The first stage includes questions related to whether survivorship care plans are actually being provided to primary care providers by oncologists and understanding facilitators of their development and use rather than just looking at barriers to their use. The second stage includes questions about the perceived value of the survivorship care plan as a communication tool by primary care providers who receive them and the impact of the survivorship care plan on primary care provider education about survivorship issues.

Each of these stages is important as a prelude to survivorship care plan outcome evaluations. In addition, understanding the value of these documents has become even more important because of the recent standard put forth by the Commission on Cancer, requiring that every cancer survivor be provided with a survivorship care plan beginning in 2015.

Important Distinction

For these reasons, the results of the Forsythe et al study recently published in the Journal of the National Cancer Institute, and reviewed in this issue of The ASCO Post, are of value and point us in the right direction.2 This Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS) study is an important sampling of oncologists and primary care providers and makes a distinction between the treatment summary and combining the treatment summary with a care plan. This is an important distinction when one is considering this document as the prime communication tool with the primary care provider.

The oncologist and primary care provider need a joint plan. Learning that the oncologists in the survey who always/almost always provide survivorship care plans had training in long-term and late effects and work in settings with partial or full electronic medical records has significant implications for our own education efforts as an oncology community. It also reminds us that the survivorship care plan as a fully electronic reality will be an evolutionary process.

Perception of Value

An additional key finding is related to the value of the survivorship care plan from the perception of the primary care provider who always/almost always receives them. These individuals stated that they never felt uncertainty or difficulties related to care coordination and were confident in knowledge about surveillance, long-term and late effects, and psychosocial needs. These are the kinds of results that inform the development and provision of survivorship care plans so they can then be utilized and ultimately evaluated for their role in the delivery of quality care to cancer survivors.

Also furthering our understanding about the use and value of the survivorship care plan, the Survivorship Committee of the American Society of Clinical Oncology recently held a Survivorship Care Planning Consensus Conference with key stakeholders to develop a Clinical Expert Statement on the development and utilization of treatment summaries and care plans. The purpose of this report is to provide a framework for improving this area of care delivery, providing clear expectations for care within the oncology setting and serving as the basis for future direction in the form of clinical guidelines and/or performance measure development.

Education and Communication

Some final issues for consideration—lest we give these documents/pieces of paper too much stature. Let’s remember that, ultimately, it’s not about the document or piece of paper. It’s about the conversation between the oncologist and the patient and ongoing communication between the health-care providers. The survivorship care plan is not an end, but a tool that works in support of education and communication needs. In evaluating it, we always need to keep this in mind. ■

Ms. McCabe is Director of the Survivorship Program at Memorial Sloan-Kettering Cancer Center, New York.

Disclosure: Ms. McCabe reported no potential conflicts of interest.


1. Grunfeld E, Julian JA, Pond G, et al: Evaluating survivorship care plans: Results of a randomized, clinical trial of patients with breast cancer. J Clin Oncol 29:4755-4762, 2011.

2. Forsythe LP, Parry C, Alfano CM, et al: Use of survivorship care plans in the United States: Associations with survivorship care. J Natl Cancer Inst 105:1579-1587, 2013.

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