Attitudes Toward Re-biopsy

In 2016 LUNGevity conducted a study titled "Willingness for multiple biopsies to improve quality of lung cancer care: Understanding the patient perspective." This study's findings were prepared as a white paper and presented at the IASLC World Conference on Lung Cancer in Vienna, 2016. Read the full paper here.

Executive Summary

With six drugs approved by the Food and Drug Administration (FDA) for lung cancer treatment in 2015 alone, the landscape for lung cancer therapy is rapidly evolving. Several targeted therapies are already marketed for patients with ALK, EGFR or ROS1 mutations, and additional drugs for these and other mutations are being studied in clinical trials. Clinical effectiveness of these drugs relies on matching patients with the right therapy through biomarker testing or profiling (also referred to as molecular testing or genetic testing of the tumor). In addition, the first immunotherapy options are now available in the clinic, with some testing requirements in labeling. Coincident with the rapid growth of new therapies is the development of improved testing methods to detect known biomarkers and the identification of new biomarkers to improve treatment stratification.

A biopsy is typically required to conduct biomarker testing, and in many cases, the same biopsy used for diagnosis can also be used for biomarker testing. If the tumor tests positive for a specific actionable mutation, then treatment with an FDA-approved targeted agent (if one exists) is typically started, or a patient can receive information about participating in a clinical study for investigational drugs. Despite an initial benefit, however, the lung cancer almost always develops resistance to the drug. Researchers have identified secondary mutations that cause resistance to the first treatment, making it important to check whether the cancer has developed new mutations. The next treatment option or eligibility for a clinical trial can then be determined. However, anecdotal evidence suggests that clinicians do not always recommend an additional biopsy because they believe that patients will not want to undergo this procedure again, or because the patient’s health condition may not be conducive to another biopsy. We conducted a study in which we asked lung cancer survivors about their perspective on getting additional biopsies. Our primary goal was to find out whether patients were willing to undergo additional biopsies. We surveyed 340 lung cancer survivors.

Interestingly, three-quarters of the survivors surveyed indicated their willingness to have an additional biopsy regardless of whether they reported any pain or complications from their initial biopsy. Specifically, among the survivors who were willing to undergo an additional biopsy:

  1. Almost all of the survivors (82%) would do so if it would help their healthcare team better match treatment to their specific cancer and personalize their care, versus just being told the test was to look for mutations. In other words, understanding the end benefit of having the test is an important piece of communication.
  2. Although almost 50% reported pain or complications from their initial biopsy, this group indicated equal willingness to have another biopsy as those without any issues.
  3. If the doctor were to recommend an additional biopsy or a biopsy after the start of treatment, nearly half would definitely undergo one. About two-thirds of the survivors felt that their doctor explained the reason for getting their initial biopsy really well. Both these findings highlight that patients value their doctor’s opinion and rely on being educated by them. They also suggest we need to build on the education component of patient care.

In summary, this study reinforces the importance of a patient-centric model in medicine—one in which meaningful and timely information is provided to patients to enable them to be partners in their own care.