Survivorship Care Planning: Whose Job Is It?

The number of cancer survivors rose to over 11.7 million in 2007, an increase of 20 percent from 2001. That represents great strides in early diagnosis and treatment. It also means that a whole new specialty is emerging: survivorship care. A key component to providing good survivorship care is the survivorship care plan.

The Commission on Cancer's (CoC) 2012 standards for cancer program accreditation now requires survivorship care plans. The CoC recommends using the IOM report "From Cancer Patient to Cancer Survivor: Lost in Transition" as a guide. This report is summarized in the IOM fact sheet: Cancer Survivorship Care Planning.

No one can deny that this information is important. Survivors need a wealth of information to stay well, including appropriate follow-up care. Cancer survivors need help coping with the sexual, financial, psychosocial, emotional, and physical effects of either having had cancer, or living with cancer as a chronic disease.

All of us agree that this is necessary: Too many of the nearly 12 million survivors are falling through the cracks of the healthcare system. But, how does an already overworked healthcare staff accomplish this task?

At first it sounds simple: A summary of treatment and a follow-up schedule. With electronic documentation, an oncologist can quickly print out a treatment summary, and the office staff can hand the person a follow-up appointment card.

But it isn't that simple.

• What about follow-up screenings such as mammograms, colonoscopies, CT scans, and blood work?
• What tests need to be done? How often? By whom?
• What aspects of the patient's care will eventually transition to a primary care physician, and what aspects will remain the oncologist's responsibility?

For example, if a patient was treated in a large cancer center, and all of his treatment was housed under one roof, access to the details of treatment might be relatively simple. But what about those patients who are treated in an oncologist's office, and then at a community cancer center? Add in the surgical and radiation portions of their treatment, perhaps a genetic counselor, and chances are, their treatment has been housed under many roofs.

It leaves me wondering the following:

• Who writes the care plan?
• Who assembles the information?
• And how long does it take to get all of that information from all of those specialists into one document?
• How does the team keep track of all of these patients?

Care plans should provide patients with a blueprint of how their care should look from the completion of treatment onward. A key part of that is handing off some care to primary care physicians. This is a challenge because patients are more comfortable with their oncologist, having visited him or her (sometimes) daily, and because PCPs are not sure what screenings and follow-ups are needed.

A complete survivorship care plan should include a summary of treatment and potential long-term side effects; specific guidelines for follow-up; preventive care and health maintenance; information on legal, employment, and health insurance issues; and psychosocial services to address issues such as post treatment anxiety and fear of recurrence.

There are a number of templates available from survivorship organizations, including Journey Forward, LIVESTRONG, and even from ASCO. But all templates require someone to input the information. And let's not forget, although essential, survivorship care planning has yet to become a reimbursable service. In my own experience, it takes approximately two hours to write the care plan, not including the amount of time it takes to review it with the patient.

Patients need good follow-up care, and as the number of cancer survivors grows, a quality care plan can make the difference between good care and getting lost to follow-up. Fine-tuning the process, though, could take time. The survivorship care planning process may have a few growing pains ahead.

References:

• Belluck, P. (2011, March 10). 20% rise seen in number of survivors of cancer. The New York TImes, p A14.
• Phillips, C. (2012). A tough transition: cancer survivorship plans slow to take hold. NCI Cancer Bulletin, 9. Retrieved from http://www.cancer.gov/ncicancerbulletin/062612/page5.