Organizations work to develop guidelines for survivorship care

National resource center, patient surveillance efforts planned


  • Carrie Printz

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As major cancer organizations anticipate the approaching American College of Surgeons requirement that all accredited cancer programs have survivorship care plans in place, many are working to develop guidelines to help foster the process.

“People are trying to figure out how best to deliver this care,” says quality-of-life and survivorship advocate Patricia Ganz, MD, director of the division of cancer prevention and control research of the Jonsson Comprehensive Cancer Center at the University of California at Los Angeles. “There won't be a right way or a wrong way, just a way that gets the job done.”

Among the organizations that are working to gather information and develop new guidelines are the American Cancer Society (ACS), the American Society of Clinical Oncology (ASCO), and the National Comprehensive Cancer Network (NCCN). The latter is an alliance of 21 of the world's leading cancer centers dedicated to improving the quality and effectiveness of the care provided to cancer patients. The NCCN hopes to have its new guidelines completed by the end of this year and unveiled at its annual conference in March 2013.

Hard at Work

Many cancer centers and organizations have been striving to define what constitutes effective survivorship care since the Institute of Medicine (IOM) issued its 2006 report “From Cancer Patient to Cancer Survivor: Lost in Transition,” which noted that cancer survivorship is a distinct phase of the cancer trajectory and that a strategy is needed for the ongoing clinical care of cancer survivors.1 The report recommended that at the completion of treatment, patients and their primary care providers be given a summary of their treatment and a comprehensive plan for follow-up.

With nearly 14 million cancer survivors in the United States, the health care community has worked since the IOM report was first released to implement its recommendations. For example, ASCO developed a number of treatment plan and summary templates for a variety of cancers, including those of the breast, colon, and lung, as well as lymphoma and a general template. In addition, several organizations, including the National Coalition for Cancer Survivorship and the Oncology Nursing Society, worked to create “Journey Forward,” a program that makes the ASCO templates more user-friendly for patients and providers and also provides a library of articles and fact sheets. The LIVESTRONG Care Plan, powered by Penn Medicine's OncoLink, is another resource.

Spurring on the latest efforts is the requirement that by 2015, all American College of Surgeons-accredited institutions will have to produce survivorship care plans for each of their patients, including a record of care received, important disease characteristics, and a follow-up care plan incorporating recognized evidence-based standards of care, when available.

Among those efforts is a joint project by the ACS and the George Washington University Cancer Institute at George Washington University in Washington, DC, which were awarded $4.25 million by the Centers for Disease Control and Prevention to establish a National Cancer Survivorship Resource Center. The 5-year grant will help support efforts to improve health outcomes and develop a plan for the nationwide surveillance of cancer survivors.

Their multifaceted program will include:

  • Developing a comprehensive analysis to identify gaps in cancer survivorship;

  • Convening an expert panel to identify performance indicators and criteria to assess the effectiveness of current survivorship activities and programs;

  • Providing support for cancer survivors and caregivers through patient navigation in the posttreatment period; and

  • Enhancing collaborations with cancer coalitions and national, state, and community-based organizations to develop and disseminate evidence-based information and resources concerning cancer survivorship.

Shared Care

At the same time, ASCO's survivorship committee is working to develop guidance statements for primary care physicians to manage survivors' symptoms and deal with their health and wellness needs. “Most things we recommend are what internists do for their general population of patients,” says Dr. Ganz. “That's why we strongly recommend a shared care model.”

Many cancer patients do not think they need to return to their primary care physicians after their cancer treatment and therefore do not go back to them until many years later; however, because most cancer patients are aged older than 65 years and have comorbid conditions, it is important for them to do so, Dr. Ganz notes. For example, an oncologist may not pay much attention to the increasing blood sugar levels triggered by steroids when a cancer patient also has diabetes.

“The goal is for the plan to facilitate communications with patients and their doctors, and to ensure that when they are discharged they are scheduled for a prompt appointment with their regular doctor,” says Dr. Ganz.

A Distinct Population

The NCCN, meanwhile, is developing its own set of guidelines for survivorship care. The organization provides clinical practice guidelines for patients, providers, and health care decision-makers and is producing these newest guidelines in response to user requests. “Survivorship issues in many respects are every bit as complicated as treatment-related issues,” says Robert Carlson, MD, a medical oncologist at Stanford Comprehensive Cancer Center in Stanford, California, who is chairing the effort. “There are a huge number of issues, and no one person is an expert in all of them.”

As a result, the NCCN has convened a diverse group of panel members to develop its guidelines, which are focused on 8 key areas: anxiety and depression, cognitive function, exercise, fatigue, immunization and infection, pain, sexual function, and sleep. Although members realize this is not a complete list, they wanted to at least get started on these key areas, he says. In addition, although most of their other guidelines are evidence-based, they recognize that survivorship evidence is still fairly sparse. Therefore, they are relying on the experience of various experts in these areas.

Among them is Crystal Denlinger, MD, a medical oncologist at Fox Chase Cancer Center in Philadelphia,

Pennsylvania, who is serving on the exercise subpanel. She observes that clinicians face challenges in integrating survivorship care planning into a typical office visit because the process can be quite time-consuming. Implementing it efficiently and determining reimbursement are all matters the health care community must address.

Dr. Denlinger and her colleagues are drawing on exercise recommendations from both the ACS and the American College of Sports Medicine to develop their guidelines. Every 5 years, the ACS issues guidelines for nutrition and activity related to cancer prevention. This year they also issued such guidelines for cancer survivors.2

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We all agree with Health and Human Services guidelines on activity levels for Americans, but how do we translate that into our specific population? We're starting to see some of that evidence emerge as survivors are being seen as a distinct population.Crystal Denlinger, MD

“We all agree with Health and Human Services guidelines on activity levels for Americans, but how do we translate that into our specific population?” she asks. “We're starting to see some of that evidence emerge as survivors are being seen as a distinct population.”

Another survivor population that is beginning to receive attention is those patients who are living with metastatic cancer. This group has unique needs because they also are undergoing active treatment, says Dr. Denlinger. The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University in Baltimore, Maryland, is one of the few centers that has expanded its survivorship program to address all phases of survivorship, including managing metastatic disease.

Dr. Carlson adds that the NCCN guidelines will be unique in terms of being an algorithmic series that ties into the continuum of cancer care, including risk reduction, screening diagnosis, treatment, and now posttreatment.

“Because research has been fairly limited, one goal is that as we develop guidelines it becomes very clear quickly where you need more data; it helps identify research areas,” he says.