NCCN Patient Guidelines for Breast and Lung Cancer Available Online

As of September 23, 2010, patients can now access online their own versions of the NCCN guidelines for cancer treatment. The patient guidelines unveiled last week at a media teleconference are for treatment of breast and non-small-cell lung cancer (NSCLC), and guidelines for other cancer sites will soon be forthcoming. The NCCN Guidelines for Patients(TM) are specifically designed for patients to help navigate the complex journey of cancer care. Patients and their caregivers can use the Guidelines for discussions and shared decision-making with physicians, as well as a tool to gain insurance coverage for treatments that might not otherwise be covered.

NCCN professional guidelines are developed by 900 experts at 21 of the world’s leading cancer centers and are used worldwide as a “bible” for clinical decision-making in cancer care. As a side benefit, doctors and patients have used them to secure insurance coverage for recommended treatments. Now cancer patients will have their own versions of the very same high-quality, evidence-based information at their fingertips.

The Guidelines for patients will be available online at as well as via a link on the Susan G. Komen for the Cure website (Komen). “The patient guidelines could not have been developed without the financial support from the Komen foundation, which provided $160,000 for development and distribution,” said William T. McGivney, PhD, CEO of NCCN.

NCCN will have at least six different cancer site-specific patient guidelines available online by the end of 2010, and guidelines for other common cancers are planned for roll out next year. Granted, the patient guidelines are written for sophisticated, educated patients—an audience that has access to computers and is “Internet savvy”—but these are the patients who are usually more knowledgeable about the latest treatments and are usually pro-active about their cancer care. Patricia J. Goldsmith, Executive Vice President and COO of NCCN also explained that a less complex set of treatment summaries for many cancers are available for patients on the NCCN website.

“It is important to let clinicians know that [in addition to the more sophisticated patient guidelines] these simpler treatment summaries are available for both patients and caregivers,” she added.

Today’s Patients

“Gone are the days of withholding diagnosis from patients or handing out bite-size portions of information and expecting passive acceptance. Today’s patients are and should be active information seekers and active partners. The norm is for patients to be knowledgeable and involved in care,” stated Al B. Benson, MD, a GI cancer specialist involved with NCCN since its inception.

“These patient guidelines are another giant step to give patients access to the same information that doctors use to make their decisions. Patients can get these online and initiate/participate in discussions with their doctors,” Benson commented.

The plan is to also have hard copies of the guidelines that can be ordered online or over the telephone. “The availability of hard copies will depend on the success of funding,” Goldsmith said. Currently, 10,000 hard copies of the patient guidelines for breast cancer and 5,000 for lung cancer have been printed.

Off-Label Drugs, Updates

The patient Guidelines will contain the same information as the professional Guidelines regarding off-label use of drugs, and updates will be incorporated in the same manner. When important studies are released that warrant inclusion in the Guidelines, changes will be incorporated in the online versions of both the professional and the patient Guidelines in a timely manner, and print versions will follow suit.

NCCN is accustomed to incorporating changes in the professional Guidelines. “For example, this year, we had four changes for breast cancer,” Goldsmith noted.

The lung cancer Guidelines are named in honor of Dana Reeves, who died in 2006 of lung cancer. Deborah Morosini, MD, Dana’s sister and a board member of NCCN, said that Dana understood the need for a national resource center for patients and their families.

“She spent many hours on the telephone and much of her energy trying to help people who wanted advice on spinal cord injury and paralysis after Christopher Reeve’s injury, and she wanted to develop a paralysis resource center. So these lung cancer patient Guidelines are a fitting tribute to Dana. They give people with a grim diagnosis a vehicle for finding out about new therapies they may not have known about,” said Morosini.

By Alice Goodman

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