Urgent Need for Survivorship Planning

Photo by © ASCO/Todd Buchanan 2012

Patricia A. Ganz, MD

Thanks to earlier detection and improved treatment, the population of cancer survivors has increased dramatically and will continue to increase as the baby boomers age. The good news is that at least 12 million Americans are cancer survivors. The bad news is that the follow-up care of survivors is typically fragmented at best—or even nonexistent.

“There is an urgent need for survivorship plans for management of patients after their cancer treatment is concluded. It’s not over when it’s over,” said Patricia A. Ganz, MD, director of the Division of Cancer Prevention & Control Research at the Jonsson Comprehensive Care Center at UCLA in California.

Ganz led a session on survivorship planning during the ASCO 2012 Gastrointestinal Cancers Symposium. She showed videotapes of survivors that revealed many common concerns, including fear of the future, continuing need for support, problems with employment, insurance challenges, and psychosocial isolation.

Some quotes from the patient testimonies were:

• “You never stop dealing with cancer. It’s a lifetime project.”

• “Getting back to living is challenging. You fear recurrence, with every new ache and pain.”
• “During treatment you get active support. Once cancer is over, people don’t give you support.”

“We need to start thinking about cancer as a chronic disease. The treatment may be finished, but many problems will persist,” Ganz stated.

Patients are often lost to follow-up because the primary care provider is not in communication with the cancer treatment team. Ganz said that medical oncologists are less likely than radiologists or surgeons to have a plan in place to be communicated to the primary care provider.

A survivorship plan should incorporate the patient’s cancer diagnosis, treatments for cancer, expected side effects of treatment, management of short- and long-term side effects, tests that need to be ordered for surveillance and designated intervals for testing, division of labor for physicians who treat survivors, psychosocial issues that need to be addressed, and suggested interventions.

“Collaboration is needed between the primary care physician and cancer specialists. There is tremendous time pressure in the primary care practice, and a survivorship plan would encourage efficiency,” Ganz stated. “We need to ensure that the medical system is there for survivors when they need it. We need to develop standardized survivorship plans.”

The burden of cancer treatment is well known. Survivors have compromised health status, more comorbid conditions, and require more help with activities of daily living, according to the National Health Interview Study (2000).

Survivors of gastrointestinal (GI) cancers face particular challenges. This is a heterogeneous group of patients, with cancers arising at different sites in the GI tract that have different etiologies, a wide age distribution, different cancers in different ethnicities, and different environmental exposures. “There is limited research on GI cancer survivors,” Ganz stated. “We will need to tailor survivorship plans for this group of patients. No one size fits all. Survivorship care plans can be brief.”

Several models of survivorship care have been developed and could be integrated into an oncology practice. The most comprehensive model depends on the availability of nurses and nurse practitioners for follow-up care. Follow-up care is a reimbursable consultation, she said.

Ganz said that survivorship plans should encompass the “Three Ps”: Palliation, Prevention, and health Promotion.

“Always ask your patients about symptoms and side effects,” she counseled. “You may need outside consultants for mental health, pain management, physical medicine, endocrinology, cardiology, and gynecology/fertility.”

Prevention efforts should include not only noncancer diseases, but also diseases related to treatments such as cataracts, osteoporosis, and cardiac disease. Chemoprevention should be encouraged when available, and lifestyle modification incorporating healthy behaviors should be emphasized.

Health promotion efforts should be aimed at reducing risk, avoiding weight gain, improving physical activity, avoiding harmful exposures, and decreasing risk of other chronic diseases such as diabetes and heart disease.

“In conclusion, we need to look at the cancer care trajectory and determine what we can do for our survivors. This includes risk assessment at diagnosis (eg, fertility preservation). We need to monitor outcomes and enhance quality of life. Think about the Three Ps,” she advised.