Upal Basu-Roy, PhD, MS, MPH
Almost 82% of 340 lung cancer survivors participating in a national survey sponsored by the advocacy group LUNGevity said that they would consent to an additional biopsy if they knew 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.” This willingness to have an additional biopsy even held true among the nearly 50% of respondents who reported pain or complications from their initial biopsy, according to the survey. This group indicated an equal willingness to have another biopsy as those who didn’t have any issues with the first one.
The findings, reported at the recent annual conference of the International Association for the Study of Lung Cancer (IASLC) in Vienna, Austria, grew out of a desire by LUNGevity to shed more light on anecdotal reports that physicians are reluctant to recommend additional biopsies because they assume that patients are likely to refuse.
Upal Basu-Roy, PhD, MS, MPH, Director of Research and Policy at LUNGevity and an author on the study, said in an interview with Oncology Nursing News that during one of the group’s annual HOPE survivorship summits, patients had identified as an unmet need the failure to be advised of how a re-biopsy might open up additional treatment options to them.
“There was obviously a [communication] gap on both sides,” Basu-Roy said, and that provided the catalyst for the national survey, he added, “so we could ask patients directly.”
Basu-Roy acknowledged that biopsy can be difficult, and re-biopsies aren’t for every patient with lung cancer. Issues specific to lung biopsy include the patient’s general health status, the health and condition of the lung to have another biopsy, and also the location of the cancer in the lung. “When you talk to a patient about biopsy, the first thing that comes to mind is that it can be a very stressful and painful process.”
Nevertheless, Basu-Roy said that he and his colleagues at LUNGevity were surprised to find overwhelming support for re-biopsy among the lung cancer survivors responding to this national survey. “We had these anecdotal stories from patients and doctors, but the big, striking, finding was that 8 out of 10 of the respondents were willing to undergo additional biopsy when the end benefit of matching the patient to a targeted therapy and more personalized treatment was explained to them.”
“The physicians may say, ‘Why should we make patients go through this again?’ but when you explain that end benefit, patients are, of course, willing to undergo that additional biopsy,” said Basu-Roy.
“Explaining the end benefit as well as the risks of that additional biopsy and then making a joint decision is what we hope will be the new paradigm.”
Basu-Roy said that there are multiple stakeholders for the message held in these survey findings, most importantly patients, but also providers, patient advocacy groups, and pharmaceutical companies.
To help spread the word, LUNGevity provides education resources such as the Lung Cancer 101 section on its website which offers information on diagnosis and treatment as well as questions patients can ask their providers. The site also has a glossary of terms to help patients to understand the language their doctors speak, added Basu-Roy, and in January, LUNGevity is officially launching a lung cancer navigation app patients can download to their mobile device which can be customized to their diagnosis: “This way, the patient will not have to sift through a lot of unnecessary information,” Basu-Roy noted.
The group also is partnering with physician groups, such as the American College of Chest Physicians and the Association of Community Cancer Centers, to disseminate provider educational materials. Another very effective dissemination platform, said Basu-Roy, is scientific conferences, such as the IASLC where this research was presented.
Underpinning LUNGevity’s Take Aim at Cancer initiative is the goal to have molecular testing done at the time of diagnosis for advanced cancer, explained Basu-Roy, and to be realized, he said, the FDA, payers, and pharmaceutical companies all need to be involved in the effort, along with patients and practitioners. “At the end of the day, if you don’t have tissue from a biopsy, you don’t have molecular testing,” stressed Basu-Roy.
In the end, however, it all comes down to better patient–provider communication: “There are two pieces to this puzzle: on the patient side, we should encourage them to ask the right questions: ‘Do I need an additional biopsy? Will I benefit? How will it change my treatment plan?’”
And, clinicians need to be more open about that dialogue, explaining to patients, “You may benefit from an additional biopsy, but these are the risks,” Basu-Roy continued.
“Our approach is that if patients are educated and empowered, then they are equal decision makers in their treatment process and that leads to better outcomes, rather than just the physician making that decision for them.”
Mantel S, Basu-Roy U, Jacobson M, Ferris A. Willingness for multiple biopsies to improve quality of lung cancer care: understanding the patient perspective. Presented at: 17th World Lung Cancer Conference, the Annual Meeting of the International Association for the Study of Lung Cancer (IASLC); December 4-7, 2016; Vienna, Austria.