Researching the effects of cancer on patients’ quality of life and championing the development and implementation of survivorship care plans have been at the forefront of the 20-year-long career of Patricia A. Ganz, MD, Director of the Division of Prevention and Control Research at UCLA’s Jonsson Comprehensive Cancer Center and Director of the UCLA-LIVESTRONG Survivorship Center of Excellence.
Six years ago, Dr. Ganz was on the Institute of Medicine (IOM) committee that prepared the report, From Cancer Patient to Cancer Survivor: Lost in Transition, which recommends providing survivors with a comprehensive care summary and follow-up plan to monitor cancer recurrences and spot late effects of treatment. Although the IOM report was published in 2006, a recent survey conducted by the Oncology Nursing Society found that only about 25% of the nurses surveyed had a formal survivorship program in place at their institutions—the result, said the respondents, reflected lack of time and sufficient funding.
But the urgency of having a system in place that tracks ongoing medical and psychosocial problems that arise as a result of a cancer diagnosis is growing, given the rising number of cancer survivors—according to the NCI, there are nearly 12 million cancer survivors in the United States—and a looming shortage of oncologists to care for them long term. These factors, combined with the decentralization of cancer care over the past 2 decades from cancer centers to community hospitals and private practices where patients may see multiple specialists, are making the need to universally adopt survivorship care plans imperative.
The ASCO Post talked with Dr. Ganz about how survivorship care plans can be implemented to improve the coordination and quality of care after cancer treatment ends.
Standardizing Survivorship Support
Why is it taking so long for survivorship care plans to become a standard part of cancer care?
About 20 years ago, oncology care largely devolved from the cancer centers and hospitals into community-based settings. Today, 80% of patients are being treated in the community by medical oncologists in three-person (or larger) practices. In those offices, there may be an initial consult record that shows the stage of a patient’s disease and the therapy planned, but there’s no summary that details how many cycles of treatment the patient received or what the toxicities were. When patients received chemotherapy as hospital inpatients, there was a hospital discharge summary, and you could figure out what went on with that patient. But since most cancer care is now ambulatory and patients are seeing not just their medical oncologist, but a radiation therapist and a surgeon as well (sometimes in separate locations), there’s no one record that details their care.
When the IOM report was finished, I took its message to various organizations, and I thought, “This is a piece of cake. You finish treating a patient with chemotherapy, you know what stage disease the patient had, you know what drugs you administered, you know what the toxicity was, so just record it. Write a summary note, and tell the patient what to do going forward.”
But there wasn’t a groundswell of enthusiasm for this practice in the medical oncology community because it was not considered to be part of standard care. Unlike surgeons, who were required to dictate an operative note for hospital accreditation and billing purposes, no equivalent procedure was in place for medical oncology. I soon realized that institutionalizing survivorship care plans in community practices was going to be very challenging because community physicians did not have the time and money to implement these procedures. ASCO also worked with electronic health record vendors to incorporate a survivorship care plan template in their software programs, but they’re still not doing very much with it.
If the comprehensive cancer centers and other major medical centers where cancer is being treated can institutionalize a survivorship care plan and make it an expectation of care, then as these physicians move into the communities to practice there will be a demand for it there. It may take 10 or 15 years for these things to change unless there are reimbursement or policy changes sooner.
Costs and Components
Is it expensive to implement survivorship care plans? What elements should every plan include?
It doesn’t cost a lot of time and effort to implement these plans if one thinks of the task as simply a clinical note that summarizes the course of treatment, which can be documented at the first follow-up visit after completing adjuvant or curative therapy. However, we don’t have any systematic method for creating treatment plans. To start using universal electronic records, there will have to be agreement on what the variables are and how they are going to be input. The problem in cancer is that there are over 100 different diseases, but we already have a TNM and clinical staging system, so we need to figure out some way to make the preparation of the treatment summary easier. Like anything else, there are things we do in medicine that are now routine, but probably when they started out everyone said, “Why should we do that?”
Ultimately, these plans are tools for better communication and better quality care. That’s what having a survivorship care plan is all about. It’s not just window dressing.
What’s included in your model of care at the UCLA-LIVESTRONG Survivorship Center of Excellence?
UCLA is a matrix cancer center, so we’re embedded within a university medical center. My Co-director at the LIVESTRONG Center is Jackie Casillas, MD, a pediatric oncologist, and we’ve developed consultative models of care for both childhood/young adult survivors and adult survivors of cancer. After seeing survivors for a consultation, we make sure that they are also being followed by a primary care physician, which may be in addition to seeing a medical or surgical oncologist, depending on their needs after cancer treatment. The key in our strategy for following survivors has been to find primary care physicians who can work collaboratively with the oncologists.
We’ve identified a number of internists and family physicians who can take care of young adult cancer survivors. They can perform gynecologic and routine medical exams and they can also follow survivors for surveillance of cancer late effects. We’ve also cultivated endocrinologists, cardiologists, and neurologists who are not just thinking about specific organs in isolation but about how those organs are affected in the context of the cancer exposure.
During their visit, we also screen all patients for depression, assess diet and physical activity, and measure body mass index. In addition to Dr. Casillas, I work closely with a psychologist from the Simms/Mann–UCLA Center for Integrative Oncology who sees the patient first during our consultation. An adult nurse practitioner also works with me to deliver information about diet, exercise, and lifestyle factors. Incorporating these clinicians into the medical consultation visit indicates to the survivor that this is part of their comprehensive medical care.
Role of Primary Care Physicians
How willing are primary care physicians to take on long-term cancer survivorship care?
At UCLA, we try to enhance the ability of the primary care physician to deliver ongoing follow-up care to survivors. Recently, we did a quality improvement study to evaluate whether our consultations were helpful to the primary care physicians with whom we worked. A physician not involved in our program interviewed these clinicians to see what they liked or didn’t like about our survivorship care plan. We were worried that our consultation notes were too long, for example. But they raved about our consult notes and plans.
Many of the primary care physicians who have received our treatment summaries and care plans over the past 5 years now refer their patients with cancer to us for a consult because they find that having the care plan roadmap allows them to better care for those patients. So we know that the plan is very useful to them.
Creating More Survivorship Plans
What can be done to increase the number of survivorship care plans nationwide?
Time and resources need to be set aside to implement care plans. The challenge is developing the infrastructure. We have a survivorship conference every year, and we do a lot of community outreach, which was part of our first 5-year Lance Armstrong Foundation grant. We had three community-based affiliates as part of our original center of excellence grant, and one focus was to develop a program in the community hospital. But the big problem is that physicians don’t want to send their patients to the community hospital for a survivorship program. The real barrier is the medical oncologist. If you are in a three-person practice, you may have to take money out of another budget to pay for preparing a care plan. It’s not seen as a priority.
Then most often the problem is staffing and budget and perhaps not being aware of the importance of survivorship care plans?
Yes. I don’t think the oncologist is intellectually or emotionally opposed to preparing a care plan; it’s more a problem of knowing how to do it, how to organize it. If you are an oncologist in a very busy practice, it may not be feasible. So I’m very sympathetic.
Role of Professional Organizations
What can the professional societies do to assist their members in developing and implementing survivorship care plans for their patients?
Some tools have already been developed and can be used by members. ASCO has worked to disseminate treatment summaries and care plans that are available on its website, and we have done several educational programs at its annual meeting. I’ve also been involved with a collaborative project called Journey Forward, which promotes the use of survivorship care plans. Oncology professionals can go to the website at Journeyforward.org/professionals/survivorship-care-plan-builder and download a Survivorship Care Plan Builder, which also includes free technical support. The plan is adapted from ASCO’s chemotherapy treatment summary templates and surveillance guidelines and is simple to use.
The program includes sample care plan forms that oncologists can customize with their practice logo. It’s fully loaded, easy to install on any computer, and includes resources such as a built-in regimen library and body surface area and body mass index calculators. This is a tool everyone can use.
Journey Forward is a collaborative effort of the National Coalition for Cancer Survivorship, UCLA Cancer Survivorship Center, WellPoint Health Insurance, and Genentech. Recently, the Oncology Nursing Society (ONS) has joined us in this partnership, and I think the collaboration will be very helpful to nurses. Having all these easy-to-use tools available will help decrease the barriers to preparing survivorship care plans, and that’s part of the message. We hope that with ONS joining this collaboration, survivorship care plans will be more widely disseminated to nurses in hospitals and within office practices, and that might make it easier for follow-up survivorship care to be conducted on a consistent basis.
We also need to get the electronic health record vendors onboard, we need to do what we can to break down the paper work, and that’s where ASCO could play a role. I’ve been pushing ASCO to deal with the vendors. Most of the institutional vendors are focused on primary care; they don’t think about oncology, which is not a big part of their market. That’s another area where the cancer centers may be able to help out, by pushing the electronic vendors to do more in this regard. ■
Financial Disclosure: Dr. Ganz reported no potential conflicts of interest.
In the Journal of Oncology Practice,1 Erin E. Hahn, MPH, and Patricia A. Ganz, MD, reported a qualitative study of cancer survivorship programs, based on in-depth interviews with teams from four institutions—an academic center, a community hospital, a primary care medical group, and a county...