What Is A Survivor’s Role in Survivorship Care Planning and Why Is It Important
By Tayla Salz, PhD
I am a researcher at Memorial Sloan-Kettering Cancer Center in New York, and I am interested in determining if cancer survivors get the information they need to get the best possible health care after they finish cancer treatment.
After finishing cancer treatment, many cancer survivors become lost in the medical system. This means that any holdover issues from treatment like hot flashes, heart problems, or digestion problems may not be managed appropriately. Survivors may not be getting their mammograms, colonoscopies, or flu shots. Depression or anxiety issues that can come up during or after a cancer diagnosis may not be addressed. And all the other health problems that existed before the cancer diagnosis – they may be ignored too.
“Survivorship care plans” were developed to help cancer survivors transition from cancer care to ongoing primary healthcare after cancer. Perhaps you’ve seen a plan or have one yourself. They are a personalized written record of your cancer and the treatment you received, an explanation of what you can expect after cancer, and a description of what can be done to promote your health. You can then take the plan to your primary care doctor, who may or may not have a lot of experience dealing with someone who has had cancer treatment. The plan should guide your primary care doctor in what he or she can do to help you best. There is no single format for survivorship care plans, but many agencies have developed plans that are publicly available.
It sounds like such a perfect idea – empowering people to help themselves through better education. Studies have shown that cancer survivors want more information, preferably written information they can take home and review. Primary care providers are eager to have more information about the special medical, psychological, and practical concerns of cancer survivors. My colleagues and I set out to find out whether oncology practices are actually giving out survivorship care plans.
We conducted a survey of National Cancer Institute-designated cancer centers to see whether they use survivorship care plans for survivors of two common cancers: breast and colorectal cancers. We found that five years after the concept of survivorship care plans was proposed, fewer than half of these leading cancer institutions are using them! We collected all of the survivorship care plans that the cancer centers do use for their breast and colorectal cancer survivors, and we found a huge variety in these documents.
Most of the survivorship care plans being used were not the publicly available ones, but rather are versions that were specially created for the cancer center. Some were very brief medical records of cancer treatment, set up to look like a very brief medical chart, full of tables and check boxes. Others were many pages long and written out as a narrative. Some had only a summary of treatment, while others focused on how to manage your own care.
None of them included every detail that a survivorship care plan was supposed to have. And no wonder – the list of details to put in a survivorship care plan includes treatment dates and doses, explanations of potential psychological problems, information about legal and financial services survivors may need, nutritional information, and on and on. All very important, but that’s a lot of information for one document.
All the cancer centers that do not use survivorship care plans told us that they want to do so or that they are working on making it happen. It turns out that while everybody thinks survivorship care plans are valuable, it’s hard to make them available for every cancer survivor that comes through an oncology clinic. There are many publicly-available forms to use, but it can be hard to pick one that works in a busy clinic. The list of details to include in a survivorship care plan is overwhelmingly long. It can take hours to fill out a survivorship care plan for each survivor (we usually hear one or two hours), and even more time to discuss the survivorship care plan with the survivor.
So while survivorship care plans seem helpful, there is much, much work to be done to make them more readily available. We need to find out what information really needs to be included in a survivorship care plan, and clinics need to figure out how to make time and resources available to fill them out and give them to survivors. In the mean time, cancer survivors who want a survivorship care plan may have to do some legwork – if your oncologist hasn’t given you a survivorship care plan, you may want to find one on-line and fill it out yourself, or even take it to your oncologist to help fill it out.
Here’s hoping that organizations like CancerForward continue to promote that survivorship care planning will eventually become a standard part of cancer care.
Tags: anxiety, CancerForward, colonoscopies, depression, heart problems, hot flashes, mammograms, Memorial Sloan-Kettering Cancer Center, National Cancer Institute, oncologist, Survivorship care plans, Tayla Salz PHD, The Foundation For Cancer Survivors