#LCSM

#LCSM Chat 27-Feb-14: What do cancer patients want from their doctors and online support groups?

The focus for the next #LCSM Chat at 8 PM Eastern (5 PM Pacific) on Thursday, February 27, 2014 will be “What do cancer patients want from their doctors and online support groups?” The moderator will be Dr. Jack West.

Online cancer support groups can provide a wealth of information and understanding for cancer patients, caregivers, and family members. Many in online forums find expertise and credibility among others who have traveled down the same road. “Expert patients” in these forums can provide an understanding and hope that even the best doctor can’t offer, because they’re living proof you can understand your treatment options, and your treatment can work. And online groups are available 24/7, for free.

However, different patients seek out different levels of information, both in these forums and with their doctors.  Some want to know all the available facts, including survival data in the tables and figures shared among oncologists.  Others prefer to trust their doctors and hope for good results. This leaves doctors wondering if providing a frank discussion of statistics (which might not be encouraging) would inform, confuse, or scare patients.

Also, different patients are comfortable with different levels of self-advocacy.  Some express a strong desire for self-determination of their treatments, while others want a clear recommendation from a trusted oncologist about the a best way to proceed.

Given the diversity in cancer patient needs and wants, our upcoming #LCSM tweetchat on will focus on the following questions:

1) Do the shared experiences of patients provide value and credibility that can’t come from medical professionals?

2) Given the growing movement to give patients their data, should doctors share stats like survival numbers with the patients?  If so, when?

3) Do engaged, empowered patients want a clear recommendation from their doctor, or a presentation of pros and cons so they can choose among the options?

We hope that those of you who use Twitter as a communication tool will join us by following the hashtag #LCSM on Thursday. Feel free to also comment here, before or after the tweet chat.

Background

Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?
by Dr. Jack West on cancergrace.org

ePatients: Engaging Patients in Their Own Care by Medscape

Society for Participatory Medicine

Are physicians ready for the e-patient movement? on KevinMD.com

The ePatient and His/Her Physician: What’s the Way Forward?

Call to Action: Tell Medicare and Medicaid to Cover Lung Cancer Screening

Anyone can get lung cancer. Screening for lung cancer with low dose CT scans (LDCT) can save thousands of lives every year. Many private health insurers already provide coverage for this screening.

Tell the Centers for Medicare and Medicaid Services (CMS) you want them to provide coverage too. On February 10, CMS opened a 30-day comment period to support their national coverage analysis on Lung Cancer Screening with LDCT. This comment period closes on March 12, 2014.

Please sign this petition to tell CMS to provide coverage for LDCT, and ask everyone you know to sign it too. The results of this petition will be submitted to CMS as a comment on March 11, 2014. You can help save thousands of lives!
Petition: http://www.change.org/petitions/centers-for-medicare-medicaid-services-cms-provide-coverage-for-lung-cancer-screening-with-ldct
.

People might also want to provide a comment directly to CMS — especially those who are Medicare or Medicaid-eligible and who were either diagnosed with advanced lung cancer or are at high risk for lung cancer.
Comment directly to CMS here:
http://www.cms.gov/medicare-coverage-database/details/submit-public-comment.aspx?DocID=274&DocType=nca&DocName=Lung+Cancer+Screening+with+Low+Dose+Computed+Tomography&NCAId=274&bc=AAAAAAAAAAQAAA%3D%3D&

If you are a health care professional who deals with lung cancer or a medical center offering LDCT, please go to this link to read more about the type of information that would be most helpful to CMS, then provide a comment directly to CMS
http://cancergeek.wordpress.com/2014/02/18/call-to-action-performing-low-dose-ct-lung-cancer-screening-please-comment-to-cms/
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For more information about why lung cancer screening with LDCT is important, read on:

Lung cancer is the #1 cancer killer in the world, and the #2 killer of all types in the United States (per the CDC). In 2012 more than 226,000 people received a new lung cancer diagnosis, and almost 160,000 died of the disease – that’s like a jumbo jet full of passengers dying every single day of the year.

Lung cancer kills so many in part because the majority of patients are not diagnosed until the cancer has already spread outside of the lung. Patients in the early stage of the disease rarely display symptoms.

Lung cancer screening with LDCT can decrease the high mortality rate of lung cancer by detecting the disease before symptoms appear and enabling patients to pursue a cure with surgery. An article in medical journal The Oncologist states “… a national LDCT screening program would save more than 18,000 lives annually.”

At this point, the guidelines recommend LDCT only for older people with high risk factors for lung cancer. Tobacco smoking is the greatest—but not the only—risk factor for lung cancer. An NIH-funded study of 53,454 current and former heavy smokers ages 55 to 74 showed screening for lung cancer using LDCT could reduce lung cancer deaths in that group by 20%.

LDCT is covered by some private health insurance policies, but it is not currently covered by Medicare or Medicaid. Anyone at any age can get lung cancer, but the risk of getting lung cancer increases with age. Older people (who are at higher risk for lung cancer) may not be able to pay for screening if it is not covered by Medicare and Medicaid.
Lung cancer screening with LDCT is now available in a growing number of medical centers. It is included in National Comprehensive Cancer Network guidelines and recommended by the U.S. Preventive Services Task Force, American College of Chest Physicians, American Cancer Society, American Lung Association, Lung Cancer Alliance, and other organizations focused on lung cancer.

It’s time early detection for lung cancer gets the same attention as other top cancers. Screening for breast and colon cancers increased both awareness and survival for these diseases.

Thank you for supporting the fight against lung cancer!

#LCSM Chat 13-Feb-2014: “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”

Erasing the stigma of lung cancer is one of the goals of all advocates who fight for more lung cancer awareness and funding.  But sometimes it’s hard to know how to go about it.

The focus of the #LCSM Chat on February 13 at 8 PM ET will be “Brainstorming: How Do We Erase the Stigma of Lung Cancer?”  Imagine we have unlimited funds, political influence in all the right places, ready access to every medical professional, and all the trained, eloquent workers we need.  What actions would erase the stigma of lung cancer?

Our moderator for this chat, Laronica Conway, will use these topics to get the discussion going:

  • T1: How would you erase lung cancer stigma among individuals? Billboards? Front-page articles? Doorbelling? Be specific.
  • T2: How would you erase lung cancer stigma among healthcare professionals? What would you need to do this?
  • T3: How would you erase lung cancer stigma among government officials and lawmakers? What would you need to do this?
  • T4: How would you erase lung cancer stigma among lung cancer patients and their families?

To prepare for this chat, you might wish to read some of the articles about lung cancer stigma on our new “Lung Cancer in the Media” page.

Guidelines on how to participate in an #LCSM Chat can be found on the “#LCSM Chat” page of the #LCSM website. Hope to see you on Twitter!

Background reading

Dear Lung Cancer Patient Who Smoked

Can we erase lung cancer stigma without mentioning “smoking”?

Breast cancer, lung cancer, AIDS: unorthodox thoughts about stigma

A systematic review of the impact of stigma and nihilism on lung cancer outcomes

Stigma among patients with lung cancer: a patient-reported measurement model

Lung cancer stigma, anxiety, depression, and quality of life

Lung cancer stigma, anxiety, depression and symptom severity

Explorations of lung cancer stigma for female long-term survivors

Lung cancer stigma, depression, and quality of life among ever and never smokers

 

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