Christopher Azzoli, MD	John Strawn, MD

Listen to the Cancer.Net Podcast: A Decision Aid Tool for Lung Cancer, with Christopher Azzoli, MD, adapted from this feature.

Non-small cell lung cancer (NSCLC) is the most common type of lung cancer. ASCO and Cancer Care Ontario (CCO) recently developed a decision aid tool to help people with NSCLC who have had surgery talk with their doctor about whether to have chemotherapy after surgery. Adjuvant therapy is additional treatment given after surgery to reduce the risk of recurrence (return of cancer after treatment). To learn more about this tool, PLWC talked with two people who helped develop it: Christopher Azzoli, MD, and John Strawn, MD. Dr. Azzoli is a medical oncologist on the ASCO Non-Small Cell Lung Cancer Expert Panel, and Dr. Strawn is a patient representative on the panel.

Q. Why did ASCO and CCO develop this decision aid?

Dr. Azzoli: The panel members were inspired by the work of Dr. Peter Ravdin and colleagues who pioneered online decision aid tools with their website, Adjuvant! Online (www.adjuvantonline.com). Some studies suggest that patients best understand the benefit of adjuvant therapy when they are told the absolute number of patients who benefit from the therapy out of a given number of patients. These numbers can be easily represented in a bar graph, which is the format used by Adjuvant! Online. With the permission of Dr. Ravdin, ASCO adopted this format and developed our own version of these tools.

Dr. Strawn: The decision tool is part of the guidelines for adjuvant chemotherapy or additional treatment for a patient who has had potentially curative surgery. We wanted to provide as much reliable information as possible in a concise and understandable format so that a patient reading this aid in the presence of and with the guidance from their doctor could decide if the benefits of further treatment were worth the risk. Reading this aid in the presence of the physician is crucial since the facts may be upsetting to patients.

Q. How can this decision aid help doctors and patients communicate about treatment?

Dr. Azzoli: There are many ways to teach patients about the benefits and risks of adjuvant therapy. Some patients are interested in numbers or statistics. This decision aid provides these numbers in an easy-to-understand format, and provides the doctor and patient a platform for discussion.

Dr. Strawn: First, this tool helps the patient and doctor make a decision together on further treatment, or agree to not use the decision tool at all. Some patients will take an aggressive approach and be "co-commanders" with their doctor. Other patients do not want to go through all the details, and trust the doctor or family members to decide on a treatment option for them. Still other patients will believe they are cured and need no treatment. The way the patient reacts to the tool can lead to important insight for the doctor on how to relate to the patient during future visits.

For those who use the tool, the patient and the doctor are reading from the same page. Patients get information from multiple sources; some are reliable, some not. The tool summarizes the available data deemed reliable by a panel of experts in treating lung cancer. Patients should have an opportunity to ask their doctor about information they have obtained from other sources, such as internet searches, friends, other doctors, and cancer organizations. The patient must be satisfied that the decision tool allows them to make the best choice.

Also, some doctors do not have this information organized in their own mind, so they may not present a choice that is easily comprehended. Some doctors may need to do much "hand holding" as they go through this tool with a patient, especially since many patients may be confused and frightened. For example, a patient may be told by his or her surgeon that all the cancer was removed, but another doctor tells them that he or she may need more treatment to lower the risk of recurrence. It takes a very compassionate and skillful physician to guide a patient through these complex facts. This is particularly true with younger patients. 

Q. How should doctors and other health-care team members use this tool?

Dr. Azzoli: All medical decisions should be shared by the doctor and a well-informed patient. This decision aid tool is made for patients who are interested in statistics as a way to learn about lung cancer. Lung cancer statistics can be frightening for patients. At the start of the interview, the doctor needs to determine the patient's level of understanding about his or her cancer, and whether the patient is interested in hearing statistics. If the patient agrees to view statistics, the doctor must be present while the patient reads this decision aid tool to make sure the patient understands what the numbers mean.

Dr. Strawn: Hopefully, the doctor will review the tool with a patient who opts to use it and answer any questions after the patient has had a chance to review and digest it with the help of family and friends. Some trained office staff may help with follow-up questions after the initial visit. If the patient uses the tool, the doctor can be more confident that the patient understands the nature of the disease and adjuvant chemotherapy.

Q. How do patients benefit by going through the decision aid with their doctor?

Dr. Azzoli: We hope that better understanding of the benefit of adjuvant therapy motivates doctors and patients to take adjuvant therapy for stage II and III NSCLC. It is possible that some patients may be discouraged by the statistics and choose not to be treated. This is especially true for stage IB disease, where the benefit of chemotherapy is small at best. When the benefit is less clear, it is especially important for doctors and patients to share the decision whether to treat.

Dr. Strawn: The tool can help patients see a broad picture of lung cancer as it pertains to them personally. The questions the patient must answer are personal, especially in the "Thinking It Over" section. Most patients will be anxious about the information presented in the decision tool. At the same time, they can see they have an opportunity to improve their survival even though it involves risks and discomfort. The tool can also help family members formulate their own role and know what to expect once treatment begins. 

Q. How does the decision aid help patients organize their thoughts after speaking with their doctors?

Dr. Azzoli: The decision aid is a platform for a much larger discussion. It may provide key information that motivates, or discourages, a patient from receiving additional treatment. But, there are many personal issues beyond statistical risk and benefit, which the doctor and patient should consider before making a decision about chemotherapy. Part of the decision aid can help patients organize and consider their thoughts and values regarding this decision and to discuss it with their family and friends, after talking with the doctor.

Dr. Strawn: The patient is given a defined list of risks and benefits so questions can be addressed to specific issues, such as controlling or treating of side effects. The questionnaire has pointed questions, which for reasons of age or other medical conditions may make some patients decide for or against treatment. Obviously, patients will want to know their own outlook for the future. Unfortunately, doctors cannot predict which of the side effects or their severity an individual patient will get, or which patient will receive a survival benefit from adjuvant chemotherapy. Hopefully, patients and their loved ones, with the help of a compassionate physician, can better understand the variations of percentages when applied to individuals.

Dr. Azzoli is an Assistant Member at Memorial Sloan-Kettering Cancer Center in New York City.

Dr. Strawn is a retired internist and serves as a patient representative on two ASCO expert panels on non-small cell lung cancer. The loss of his daughter to non-small cell lung cancer inspired him to become a patient representative on these panels.

ASCO-CCO Decision Aid Tools

Stage IB Decision Aid Tool

Stage II Decision Aid Tool

Stage III Decision Aid Tool

Additional Resources

Adjuvant! Online

American Lung Association: Help with Treatment Decisions for Lung Cancer

Lung Cancer Alliance: Lung Cancer Awareness Month

National Lung Cancer Partnership

More Information

Cancer.Net Guide to Lung Cancer

ASCO Patient Guide: Adjuvant Treatment for Lung Cancer

ASCO Patient Guide: Advanced Lung Cancer Treatment