Join us for our 7/31 #LCSM Chat (8 PM ET, 5 PM Pacific) as we celebrate #LCSM’s one year anniversary!
The first-ever Lung Cancer Social Media (#LCSM) Chat took place on July 25, 2013. You can read more about how #LCSM was formed here. We’ve come a long way in one year: we’ve hosted 25 informative chats, formed many great friendships, and experienced awesome support and collaboration among lung cancer patients, caregivers, family members, advocates, healthcare providers, researchers and charities. In the past year, the 7,900 participants in the #LCSM community generated over 69,000 tweets that shared new research findings, supported patients and family members, promoted #LCAM2013 (Lung Cancer Awareness Month 2013), and collected 8300 signatures on our Change.org petition in support of Medicare Coverage for lung cancer screening with low dose CT.
Our 7/31 Chat will review our track record and ponder the future of #LCSM. Our moderators Deana Hendrickson (@LungCancerFaces, on her first outing as moderator) and Laronica Conway (@louisianagirl91) will raise the following questions for discussion:
T1: What has #LCSM done well in its first year?
T2: What could #LCSM do better in its second year?
T3: How might #LCSM encourage more collaboration among the #lungcancer community on social media?
Hope you will join the Chat and share your views! Remember to add #LCSM to your tweets, or use a tweetchat tool like tchat.io (more on that here).
On Thursday June 26, at 12 noon Eastern Time, the Journal of the American College of Radiology (#JACR) tweetchat will discuss the patient’s perspective of lung cancer screening. It will be hosted jointly by #JACR and #LCSM, using the hashtag #JACR, and will be moderated by Dr. Ruth Carlos (@ruthcarlosmd) of #JACR with guest moderators Ella Kazerooni, MD, and Janet Freeman-Daily (@JFreemanDaily) of #LCSM. #JACR posted about the chat and provided the following information:
“Ruthie, your dad fell down and now he has cancer.”
My dad had tripped down a short flight of steps to the basement. In Urgent Care, he received a chest X-ray for shoulder pain, inadvertently detecting his lung cancer. I was grateful that he accidentally fell, grateful that he received a chest X-ray rather than shoulder X-rays, grateful that I still have my dad, a 70 year old man who smoked two packs a day since he was 18.
The survival rate for early stage lung cancer is nearly 50%. The survival rate for late stage disease is less than 5%. The U.S. Preventive Services Taskforce (USPSTF) recommends a more systematic way to screen individuals like my dad: use low dose computed tomography, also known as low dose CT or LDCT, to find early stage lung cancer. The National Lung Screening Trial enrolled more than 53,000 participants in a study. It showed lung cancer screening with LDCT resulted in 20% fewer deaths from lung cancer compared to screening by chest x-ray. On the strength of these findings, the USPSTF showed strong support and issued a “Grade B recommendation” for lung cancer screening with LDCT, requiring private insurance plans to completely cover this service. Medicare administrators now are weighing the decision to cover lung cancer screening, balancing the benefits with the unintended harms.
Some of the harms associated with lung cancer screening include “false-positives”—detected nodules or tumors that are actually not cancer. Low dose CT can also detect abnormalities outside the lungs, such as thyroid nodules or heart problems. These are called “incidental findings” or “incidentalomas,” most of which are benign. However, because a small percent of incidentalomas turn out to be potentially harmful, additional diagnostic testing may be required. These additional procedures can lead to increased cost to the patient, even if the screening test is free. Both false positives and incidentalomas can potentially increase patient anxiety, test-associated radiation, and out-of-pocket costs.
Understanding patient concerns about lung cancer screening is essential to fully implementing this life-saving medical service of LDCT. Patient-Centered Outcomes Research, or PCOR, focuses on addressing patient questions such as “What can I do to improve the outcomes that are important to me?” and “How can clinicians and the care delivery systems they work in help me make the best decisions about my health?” Per a USPSTF recommendation, the ECOG-ACRIN cancer research group proposes to develop a registry of participants who receive lung cancer screening in order to understand the full patient experience, including what outcomes, benefits and harms are most meaningful to patients, how to consistently communicate these benefits and harms, and how to support patient choice regarding screening. ECOG-ACRIN is one of the National Cancer Trials Network groups launched this year by the National Cancer Institutes. It is implementing PCOR principles in the development phase of the registry to incorporate patient voices and perspectives.
Here are the four questions that will be discussed during the Tweet Chat:
T1: What clinical, psychological and cost outcomes are most important to patients who receive lung cancer screening? #JACR
T2: Some lung nodules detected by lung cancer screening are “false positives” (not cancer). What effect would this have on you? #JACR
T3: Lung screening might detect other conditions (e.g., thyroid and heart) needing more tests. What concerns you about this? #JACR
T4: What aspects of lung screening benefits and harms are difficult to understand? How might understanding be improved? #JACR
If you would like to be considered for a patient advisory panel about lung cancer screening or want to tell us about your experience, email us at firstname.lastname@example.org.
Moderators for This Chat
@ruthcarlosmd (Ruth Carlos, MD), Deputy Editor for JACR and Co -Chair of the ECOG-ACRIN Patient Centered Outcomes and Survivorship Committee.
Special guest: Ella Kazerooni, MD, Cardiothoracic Division Director and Professor of Radiology at the University of Michigan, is the Vice Chair of the National Comprehensive Cancer Network (NCCN) lung-cancer screening panel. She recently testified before the Medicare Evidence Development & Coverage Advisory Committee on the value of lung cancer screening and the need for Medicare coverage of LDCT.