#LCSM

#LCSM Chat Topic 2/23:Living with Cancer–What’s in your Toolbox?

imagesWhether you’ve been diagnosed recently, or have been living with it for years, daily life with cancer can be a challenge. Of course, different disease stages and treatments will have an impact on the types of challenges patients, caretakers and physicians face. Nevertheless, there are common strategies or tools that can improve quality of life (QOL) for most patients. Moderator Deana Hendrickson (@lungcancerfaces) will pose the following questions to help gently guide this week’s conversation:

T1: How can spirituality and/or faith play a role in improving QOL for patients? Examples? #LCSM

T2: Does support improve QOL for patients (family, coworkers, other patients, etc.)? Are there patients who can “go it alone?” #LCSM

T3: How can hobbies or interests, new or old, help distract from living in cancer world? #LCSM

T4: Do you know someone who has benefited from seeing a therapist to deal with cancer-related issues (anxiety, depression)? #LCSM

T5: Does research & active participation in treatment improve QOL? How can patients & physicians balance hope/reality? #LCSM

T6: What about palliative care (pain management, physical therapy, SOB relief, etc.)? Is that offered? Has it helped? #LCSM

T7: Regardless of prognosis, can it be helpful to face mortality & get affairs in order, or is it counterproductive? Why? #LCSM

T8: How can physicians help patients cope? Is communication style important? Early palliative care referral? What else? #LCSM

Please join us Thursday, February 23, at 5 pm PST/8 pm EST, for what should be a lively and friendly discussion. If you’re new to tweet chats, please check out this primer.

#LCSM Chat Topic 2/9: Flip the Clinic for Lung Cancer–What Works Best?

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Our topic for the next #LCSM tweetchat on Thursday, February 9th at 5 PM Pacific (8 PM Eastern) is “Flip the Clinic for Lung Cancer: What Works Best?” Flip the Clinic is an open experiment to transform the patient-clinician experience. The movement was started in 2013 by the Robert Woods Johnson Foundation and was the topic of an #LCSM Chat about two years ago.

There is much medical literature about what constitutes best practices in the care of lung cancer patients. However, patient-centered research has only recently began investigating the best ways to provide good care and quality of life as defined by patients.  This research is exploring topics such as the best ways to cope with (or even prevent) treatment side effects, and what strategies improve the communication between patients, family members, and healthcare providers.

Answers to some of these questions may already known by engaged patients, family members, and healthcare providers.  On Thursday, February 9th, we will “flip the clinic” and share our views of best practices and strategies in the care of lung cancer.  Moderator Dr. David Tom Cooke (@DavidCookeMD) will lead the discussion using these topic questions:

  • T1 What best helps patients cope w/symptoms, avoid complications or recover from treatment (whether surgery, drugs, or radiation)?
  • T2 What best helps patients retain info during dr visits? How can we improve communication between patients & healthcare providers?
  • T3 What best helps patients deal with “scanxiety” (anxiety between scans) during “watchful waiting, treatment, or survivorship?
  • T4 What best helps explain #lungcancer staging & treatment to patients and families? What communication aids would you like to see?

Please remember to include #LCSM in ALL your tweets so the other chat participants can see them. You can read a primer on participating in the chat here. Hope you’ll join us!

#LCSM Chat Topic 1/26: Education and Shared Decision Making for Cancer Patients in the Era of Fake News and Post-Truths

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Though there are many terrific features of social media and sharing of information among patients and caregivers, the last year has also reminded us of the potential harms of easy sharing of misinformation.  “Fake news” may have always been a potential threat, but the decentralization of information sources and “hyper-partisanship” makes it very easy for people to seek information primarily if not exclusively from sources that feed our own biases rather than challenging them with new perspectives.

Though the media have largely focused the concept of fake news and post-truths through the lens of politics, fake news is a tremendous challenge to good patient education and patient/physician communication.  Fake news, as well as its little brother, excessive and unjustified media hype, also drain the limited resource of time from clinic visits as physicians struggle to counter misinformation and redirect patients to more evidence-based treatments. At the same time, physicians may also fall prey to their own biases and make recommendations based on dubious sources.

Like the anti-vaccine campaign that has been definitively proven to be predicated on misinformation but remains widely perpetuated, cancer care is replete with concepts like alkaline therapy, the Gerson diet, antineoplastons, and cannabis oil as cancer treatments that are widely disseminated despite no clinical evidence beyond testimonials. Many of these have been around for decades, remaining unproven if not conclusively proven to offer no benefit. Social media and online communities facilitate the perpetuation of any kind of information, including myth as well as fact. It has been challenging to try to filter off the misinformation or train people to reliably identify more questionable sources of content, particularly if it says what people want to hear.

This Thursday, January 26th, at 8 PM Eastern, 5 PM Pacific, our #LCSM chat will turn to the question of how the lung cancer community, including patients, caregivers, and physicians, can try to raise the quality of shared information and better filter the fake news and misinformation from genuine, fact and evidence-based treatment recommendations.  We will explore the following questions:

T1) Are unproven/disproved treatments “alternative truths” or “fake news”? Is there room for them alongside evidence-based options?

T2) Is myth favored over fact due to poor education or wrong sources of info? Do many pts seek info only from fake news sources?

T3) Are there ways to reliably identify what should be considered most credible sources of info about cancer treatments?

T4) Are there ways to counter cancer misinformation? Are pts/caregivers better equipped to do as “peers”, or docs in clinic visits?

This should be a dynamic discussion, so we hope you’ll join us for the #LCSM chat on Thursday, 1/26.  Please remember to include #lcsm in ALL your tweets so the other chat participants can see them. You can also read a primer on participating in the chat .

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