#LCSM Chat Topic 7/17: Help us define the benefits of online resources for lung cancer patients

The topic for the #LCSM chat on July 17 (8 PM Eastern, 5 PM Pacific) will be “Help us define the benefits of online resources for lung cancer patients.” The moderator will be H. Jack West, MD.

Dr. West writes this on the GRACE blog:

We have seen over the past decade that patient self-education and participation in their own care have been steadily increasing with availability of the Internet. It has enabled patients and caregivers to look online for information as well as to connect with other people in the patient community who can provide both knowledge of available treatment options and support.

We often hear that online educational resources and communities are helpful for patients and caregivers, but we actually know very little of how and how much beyond that basic statement. While many note that their care has been improved, we still lack actual data about the benefits realized and the impact on health care. We need to present and discuss some actual data to the oncology community to convey the potentially constructive impact of epatients, Janet Freeman-Daily (@JFreemanDaily) and I are hoping to work with others in the lung cancer/ #LCSM community to develop a survey that can help convert some of the anecdotal strands in patient stories and discussion forums into interpretable data that we might present to cancer specialists to help health care professionals become more receptive to epatients and the value of online resources.

At this point, our first step is to address the key topics to cover in developing such a survey. We would like to dedicate the upcoming #LCSM chat on July 17th (8 PM Eastern, 5 PM Pacific) to a crowd-sourced discussion of the most valuable questions to ask and results we should hope to report. The chat will cover these central questions:

1) How can we determine what the most useful information is and where people are most successful in finding it?

2) How can we assess how HCPs receive/respond to information presented by patients & caregivers?

3) Can we assess how this info is used in shaping care? Is there some way to learn if/how it improves outcomes?

4) Will there be enough interest in this to expect many pts to participate? And how best to reach online pt community?

5) How long a survey (time req’d) would be appropriate before it’s excessive?

We hope you’ll join us for the #LCSM tweet chat on July 17th! Just follow the hashtag and add it to your Twitter comments. This is a great way to help contribute to the voice of the online community in speaking to what the experience means today and how it shapes cancer care.

P.S. Janet Freeman-Daily will miss this chat due to travel.

#JACR Chat 6/26: Patient Perspective on Lung Cancer Screening (#LCSM cohosts)

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 lungscreeningregistry@gmail.com.

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. 

@JFreemanDaily (Janet Freeman-Daily) , cofounder and comoderator for Lung Cancer Social Media #LCSM Chat on Twitter.

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.

#LCSM Chat Topic 6/19: Which lung cancer surgery outcomes are most important to patients & families?

Our topic for the next #LCSM Tweet Chat on Thursday, June 19th at 5 PM Pacific (8 PM Eastern) is “What are clinical and functional outcomes after lung cancer surgery that are most important to patients and their families?”  The moderator for this chat is Dr. David Tom Cooke (@DavidCookeMD).

Patient-centered outcomes research (PCOR) seeks to help stakeholders (patients, their family members, friends and care providers) communicate and make informed healthcare decisions, allowing multiple voices to be heard in assessing the value and efficacy of healthcare options.  PCOR answers patient-centered questions such as: “What can I do to improve the outcomes that are most important to me?” and “How can clinicians and the care delivery systems they work in help me make the best decisions about my health?” (http://www.pcori.org/). Dr. Cooke is seeking to bring the concept of PCOR to thoracic surgery research and improve outcomes for patients undergoing lung cancer surgery.

Lung cancer surgery, specifically lobectomy (removing about 1/3 of the right lung or 1/2 of the left lung) and pneumonectomy (removing an entire lung) are the gold-standard therapies for early and locally advanced lung cancer.  However, lung cancer surgery is high-risk and can be associated with an elevated risk of death (mortality), complications, prolonged hospital stays, and hospital readmissions.  In U.S. hospitals, national 30-day mortality is 4-6% after lobectomy and 11-17% after pneumonectomy (Birkmeyer et al, N Engl J Med. 2002).  Dr. Cooke is investigating if patient and family participation can drive improvements in lung cancer surgery outcomes, leading to the creation of successful after-surgery patient care protocols that will translate the good results of high performing medical centers to all types of institutions performing lung cancer surgery.  Active engagement of patients and their families in the after-surgery clinical care process may improve the quality of life and overall survival of patients surgically treated for lung cancer.

This conversation with the #LCSM community will help identify which clinical and functional outcomes are most important to patients, family and friends after surgery for lung cancer.  Were there any communications problems after surgery or during the hospital stay, and if so, how can surgeons, patients and all stakeholders improve the communication?  And finally, what changes in the lung cancer surgery care process are needed to achieve the clinical and functional goals that are important to patients and their family/friends?

With the above goals, here are the 3 questions that will be discussed during our June 19th Tweet Chat:

T1: What post-op clinical and functional outcomes are most important to you (patients & family) after surgery for lung cancer?

T2: Any problems in communication between patient, family & HCPs after lung surgery & during hospital stay? How can this be improved?

T3: What changes in lung cancer surgery care process are needed to achieve clinical/functional goals important to patients & family?

Please join us. Remember to add the hashtag #LCSM to your tweets at the appointed hour and follow the stream.  Here is more info on how to participate in #LCSM Chat.  To learn more about Dr. Cooke’s research project “Empowering Patients and their Families to Improve Outcomes That are Most Important to Them after Lung Cancer Surgery”, click here.

If you cannot participate in the tweet chat but still want to share your thoughts about the above lung cancer surgery questions, please post your thoughts in the comments below.  The #LCSM founders will make sure your comment is tweeted during the chat.

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