Since the Institute of Medicine’s (IOM’s) 2005 report, From Cancer Patient to Cancer Survivor: Lost in Translation,1 survivorship plans have received growing attention. In short, a survivorship care plan is the record of a patient’s cancer history and recommendations for follow-up care. At
ASCO’s recent Quality Care Symposium, the pros and cons of survivorship plans were debated.2
Patricia A. Ganz, MD, UCLA Schools of Medicine and Public Health, Los Angeles
“For many decades, hospitals have required doctors to prepare a discharge summary for their patients in order to communicate with the outpatient physician what happened during the patient’s hospital stay. It often summarizes lengthy and complex stays,” said Dr. Ganz, adding, “This summary also informs the patient of what care and medications are planned post discharge, so they and their caregivers can plan accordingly.”
Dr. Ganz explained that the patient may have been too ill to remember details of the hospital stay and could still be sick at the time of discharge. “Quite frankly, there were no clinical trials to test the value of care summaries; it evolved over time and became an accredited part of hospital procedures simply because it makes common sense,” said Dr. Ganz. She emphasized that poor communication during the handoff from hospital to outpatient can lead to unnecessary readmissions.
“Cancer is different from most chronic diseases. It is incredibly complex, lasting months to years. The treatment is also complex, multimodal, and multidisciplinary. The drugs are highly toxic and expensive, and the treatment is often poorly coordinated in the outpatient setting,” said Dr. Ganz.
Neglected Phase of Cancer Care
She then referenced the IOM’s 2005 report, which found that survivorship is a neglected phase of the cancer care trajectory, and there are few guidelines dealing with follow-up care. “The report also found that many survivors are unaware of the late effects of their cancer treatment, so they have no follow-up plan that might help diminish some of the risks they’ll encounter in the future,” said Dr. Ganz, adding that the report also stated that cancer should be viewed as a chronic disease where we focus on prevention, surveillance, intervention, and coordination of care.
She continued, “There have been several examples of implementing survivorship care plans into clinical practice—for instance, the ASCO breast cancer registry pilot, in which 20 oncology practices participated in an effort to prospectively create a treatment plan and summary. The study was initiated to see if you could report on quality measures using a treatment and summary care plan. There was some initial grumbling about cost, but most of the providers felt that the summary care plan helped improve communication with patients,” said Dr. Ganz.
In another recent study in the Journal of Oncology Practice, a nurse and social worker were able to successfully deliver treatment summaries and care plans at a cost that was reimbursed, and they identified important patient needs that increased satisfaction with care.
“There’s a lot of back and forth about how to do a survivorship care plan, but I really don’t think there’s one way to approach it. We need to start somewhere because we do know that communication with patients can help coordination and adherence to follow-up. So we cannot let the perfect be the enemy of the good. The time is now for survivorship care plans,” concluded Dr. Ganz.
Eva Grunfeld, MD, DPhil, FCFP, Ontario Institute for Cancer Research and University of Toronto, Canada.
Dr. Grunfeld said that she supports the concept of survivorship care plans, noting that she was an early adopter, publishing the first trial evaluating survivorship care plans, the results of which were used to frame her position. “I’m going to focus on the con as controversies rather than the con as against,” said Dr. Grunfeld, adding, “For instance, several reviews in the literature have found a huge variation in the elements included in survivorship care plans.”
In addition, she noted a controversy over variation in determining when to provide the survivorship care plan. “The IOM report originally recommended that the care plan should be started at the end of treatment, while ASCO suggests that it should be an ongoing document, and the UK National Survivorship Initiative recommends beginning it at time of diagnosis,” said Dr. Grunfeld.
She continued, “Similarly, there is a huge variation in the format. It could be a face-to-face discussion with a provider, a paper document, or be done electronically. But the most important controversy is determining how to measure the plan’s benefit. We’re an evidence-based culture—we want to know what outcomes are most relevant and who they will benefit,” she said.
Dr. Grunfeld commented that while initiating a survivorship care plan is comparatively inexpensive, her study found that in many instances the plans did not meet the statistical cost-effectiveness threshold. “And although most cancer organizations have recommended that survivorship care plans become standard practice, there are many implementation challenges that need to be overcome before that happens,” she said.
“The final controversy is determining whether the complex needs of cancer survivors, who have multiple chronic conditions, are met by survivorship care plans, and will they improve continuity of care,” said Dr. Grunfeld. She referenced a population-based study of survivorship care plans conducted in Ontario that found shortcomings in both addressing the complex needs of survivors and in improving continuity of care.
“I agree with Dr. Ganz that the time for personalized survivorship care plans has arrived. But when you think about policymakers, managers, and oncology providers who have to deal with the costs and opportunities in an evidence-based environment, I think the value of survivorship care plans is undecided at this point. We need to refine our approach and be able to determine the patients most in need of these plans. And we must be able to link needs to services to give full value to these instruments,” Dr. Grunfeld said.
The message distilled from pro and con discussions is that survivorship care plans could be an important part of the continuum of cancer care. But before being fully embraced as standard care, we need to refine the design, implementation, and timing of plans. And as Dr. Grunfeld concluded, in order to make these plans valuable and cost-effective instruments, we need to link needs to services. ■
Disclosure: Drs. Ganz and Grunfeld reported no potential conflicts of interest.
2. Ganz P, Grunfeld E: Survivorship care plans: 2013 Quality Care Symposium. Presented November 2, 2013.