Lung cancer patients and caregivers are becoming increasingly more involved in their lung cancer treatment decisions. With so much health information available on the internet, it is not unusual for a patient or their loved one to show up at the doctor’s office with a stack of articles to discuss and very specific questions. Some people touched by lung cancer are attending lung cancer conferences to learn about the latest lung cancer research in hopes of learning about improved treatment and survival.
While lung cancer patients and caregivers can get superb care without ever cracking open the Journal of Thoracic Oncology, there is value in teaching non-scientists how to read and interpret scientific studies. An educated patient/caregiver can have vital shared-decision making conversations about the pros and cons of a treatment options as well as the goals and anticipated outcomes of treatment.
On August 18, 2021, The American Lung Association hosted a webinar called “How to Understand a Lung Cancer Research Study,” featuring speaker Dr. Khadijah Mitchell. Below are some key takeaways from the webinar, as well as some other important definitions that can help any person better understand a lung cancer research study.
- Confirm when the research was published and the type of research. Studies that are 2 years old now were performed 2-4 years before that, so there might be new data. In the webinar, Dr. Mitchell discusses the different types of research papers and how they can be used.
- Start by reading the abstract. This is like the movie trailer for the article. Now is a good time to look up any words you might not understand. Research articles are written at a very high level, so you might need to re-read the abstract a few times to understand what it is saying.
- To really absorb what the article is saying, take the “Three Pass Approach.”
- First pass: Skim the article (5-10 minutes)
- Second pass: Read through the article for understanding but ignore some details (1 hour)
- Third pass: Read the article a second time and try to understand all the details (1-5 hours)
- Don’t fret if you can’t understand the article. You can always take it to your doctor or see if any members of the Lung Cancer Survivors Community might be able to help.
- Like with anything you read, be discerning. If an author’s conclusions don’t make sense or you feel like the study wasn’t well done, those feelings are valid. You can discuss these concerns with your doctor or your peers to get their opinion, or you can even attempt to reach the researchers by contacting the “corresponding author.”
- Note the sample size, sometimes referred to as the “n.” Generally, the larger the sample size, the stronger the data. However, it is not always possible to recruit a large number of participants into a clinical study and even studies on a small number of people can provide value. Nonetheless, it is still valuable to know if the author has drawn the conclusion based on data from a handful of patients or a larger set.
- Naturally, patients and caregivers want to know about chance of survival from a new treatment being studied. It is important to recognize that researchers define survival in several different ways.
- Disease free survival (DFS) is the length of time between when a patient receives a treatment, and the disease comes back.
- Progression free survival (PFS) is the length of time during and after the treatment that a patient lives with the disease, but it does not get worse.
- Overall survival (OS) is the length of time from either the date of diagnosis or the start of treatment for a disease, such as cancer, that patients diagnosed with the disease are still alive.
- Median survival (MS) is the length of time from either the date of diagnosis or the start of treatment that half of the patients in a group of patients diagnosed with the disease are still alive.
- Response rate (RR) is the percentage of patients whose cancer shrinks or disappears after treatment.
- Adverse event (also called adverse effect or adverse experience) is an unexpected medical problem that happens during treatment with a drug or other therapy. Adverse events may be mild, moderate or severe, and may be caused by something other than the drug or therapy being given.
- Standard of care (SOC) is treatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals. Also called best practice, standard medical care and standard therapy. Often clinical trials are examining whether a new treatment works better than SOC.
Is your head spinning? Not to worry. The more you practice reading research articles, the easier it will become. Lung cancer research is moving at a rapid pace and keeping your eye on new trials and emerging data may help you have more meaningful conversations with your care team.
- Watch a recording of the “How to Understand a Lung Cancer Research Study” webinar
- Much emerging research is on lung cancer biomarkers as well as lung cancer immunotherapy. Visit the linked resources to familiarize yourself with those treatment options.
- Connect with your peers through our free online support community on Inspire called Lung Cancer Survivors.
- Request a lung cancer patient or caregiver mentor to help guide you.
Blog last updated: September 27, 2021