Wednesday, May 9, 2018

Palliative Care- When and Why - May 2018


For this month's chat, Palliative Care - When and Why, we welcomed guest Christian Sinclair (@ctsinclair), a palliative care and hospice physician, editor of Pallimed and founder of the #hpm community on Twitter. Fifty-four participants made over 2.3 million impressions during the hour chat. You may find more analytics here and the transcript here.

Here is a sampling of responses. Please scroll down for Resources. 

What do you think of when you hear the term "palliative care"? What does it mean to you?
  • PalliativeCare is symptom management offering emotional support, to patient and family. At any time during Cancer dx not just eol.
  • Living life on your terms with the help of team of healthcare professionals who support the patient and family
  • Palliative care-I think of a critical piece of overall care during serious illness, pain, and end of life.
  •  I think of palliative care as an opportunity for someone to receive whatever support (pain management, counseling, home care, accessing info/resources, etc.) they may need when progressing through a health problem that may be life limiting #gyncsm
  • Palliative care should be available at any age and any stage. The goal is support. 
  • We #hpm docs spend quite a bit of time clarifying perceptions of the field (ie. its not just end of life care). Our #PalliativeCare thermometer highlights the domains of a person's care that may be of importance to them! #Palliative Care is whole person care!
This first question also began a discussion regarding the term "Palliative care". Some felt that the term may actually turn patients off from getting the care they need. Some centers use the term Supportive care. Sinclair responded "There are lots of debate inside and outside the palliative care community about finding the best name. Ultimately it comes down to organizational/community culture, and making sure the clinicians feel comfortable introducing the concept as concurrent, not either/or".

When do cancer patients tend to get referred to a palliative care specialist? Do you find this to be a tricky conversation? Patients - Did anyone on your care team discuss palliative care with you?
  • ASCO recommends PalliativeCare is offered within 8 weeks after dx
  • We are seeing more family and patient-initiated #pallaitive care referrals. As they realize they can have more support, they are starting to ask for it and our oncologists are open to collaborating with us. Caveat: I am in an academic med center in a metro area.
  • Patients with advanced cancer should be referred to #pallativeCare early and it should be an integral part of treatment, not just something added on near the end of life
  • I see them referred too late. Palliative care is still associated with end of life & have been told “they aren’t ready for that”. Who’s not ready for patient centered care that views the whole person not the illness & manages all symptoms physical, emotional, etc.?!

Why is knowledge of and access to palliative care throughout cancer treatment important? Does Medicare/Insurance cover palliative care? Are there specialists in rural areas?
  • For this chat I found this @ASCO Connection article : Telemedicine has been used for those in rural areas.https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation
  • Looking at symptom management by a specialist in the field offers a complementary approach to managing the disease itself by treating the patient as a whole being. Services are covered but often require copay. Rural areas often lack service
  • Medicare covers PalliativeCare for symptom management in some extent Improving Quality of Life and prolong survival.
  • #Telehealth show great promise is rural settings, along w/ patients' willingness to engage. Telehealth reduce travel needs, removing physical and financial burdens associated with travel. Telehealth utilization for #pallativeCare is emerging rapidly

What are medical and advocacy organizations doing to promote palliative care for cancer patients? How can patients advocate for themselves?

What do you wish you knew about palliative care at the beginning of your experience with a cancer-related diagnosis? For those who have worked with a palliative care specialist, what was most helpful? most challenging?
  • I think more and more patients appear to be more empowered to not just get the latest greatest cutting edge research treatment, but to make sure they get all their needs met. Aiming for whole person care. To be fair though, advocating for yourself is really hard work
  • Considering how much time we have to spend talking through acute issues with my GynOnc since I’ve been terminal, it’s not surprising we don’t talk about palliative care. I’m focused on getting more Oncs to have this talk when cases aren’t as complicated.
  • I wish I had known when my dad was diagnosed that pts in #palliativecare can still go to PT and OT to help them gain the strength to return home for EOL. It would have saved so much pain for him while he tried to get strong enough to return home.

If you are a caregiver or patient you may continue this discussion online on the Smart Patients platform at https://www.smartpatients.com/gyncsm .

Be sure to check our resources below.

Join us next month on June 9th for Let's Discuss Value of Care.

See you then.
 

Dee
#gyncsm Co-founder



Resources
Perceptions of #palliative care by people with adv cancer and their caregivers
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4938707/

Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center.
https://www.ncbi.nlm.nih.gov/pubmed/21212438

Predictors of high symptom burden in gynecologic oncology outpatients: who should be referred to outpatient palliative care?
https://www.ncbi.nlm.nih.gov/pubmed/24472408

Practice Patterns, Attitudes, and Barriers to Palliative Care Consultation by Gynecologic Oncologists. https://www.ncbi.nlm.nih.gov/pubmed/28783424

Economics of Palliative Care for Hospitalized Adults With Serious Illness https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2678833?utm_source=twitter&utm_campaign=content-shareicons&utm_content=article_engagement&utm_medium=social&utm_term=050818&redirect=true#.WvJSZ-FbZeU.twitter


Palliative Care in the Global Setting Resource-Stratified Guideline
https://www.asco.org/practice-guidelines/quality-guidelines/guidelines/supportive-care-and-treatment-related-issues?et_cid=40284775&et_rid=977394059&linkid=Palliative+Care+in+the+Global+Setting%3a+A+Resource-Stratified+Guideline_link#/31016

@theNCI Palliative Care in Cancer Care
https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet

@Cancerdotnet Caring for the symptoms of cancer and its treatment
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/palliative-care/caring-symptoms-cancer-and-its-treatment

@SGO_org
https://www.sgo.org/newsroom/position-statements-2/delivery-of-palliative-care-services/

Dana Farber

How Does Palliative Care Help Cancer Patients? | Dana-Farber ...

ASCO Connection: Telemedicine in Palliative and Supportive Care: A Continuing Conversation
https://connection.asco.org/blogs/telemedicine-palliative-and-supportive-care-continuing-conversation

Links to Palliative Care Graphics Shared:
https://twitter.com/skochb/status/994387131161366528
https://twitter.com/IshwariaMD/status/994387821770297344
https://twitter.com/IshwariaMD/status/994388792747360256

https://twitter.com/skochb/status/994387131161366528
https://twitter.com/skochb/status/994387131161366528
httpwitter.com/skochb/status/994387131161366528

Friday, May 4, 2018

May 9th Chat: Palliative Care - When and Why



This month we will return to a topic we last covered in 2015 - Palliative Care. We will once again be joined by Christian Sinclair (@ctsinclair), a palliative and hospice medical care physician, editor of Pallimed and founder of the #hpm community on Twitter.

More people are familiar with palliative care now, although there is still confusion as to what palliative care is versus hospice. Did you know that some are providing palliative care through Telemedicine? Did you know that ASCO issued a guideline on the Integration of Palliative Care on Standard Oncology Care? Join us as we discuss these topics.

T1: What do you think of when you hear the term "palliative care"? What does it mean to you?

T2: What is the technical definition of "palliative care"? How is it related to yet different from hospice care? Is there still a lot of confusion between the two?

T3: When do cancer patients tend to get referred to a palliative care specialist? Do you find this to be a tricky conversation? Patients - Did anyone on your care team discuss palliative care with you?

T4: Why is knowledge of and access to palliative care throughout cancer treatment important? Does Medicare/Insurance cover palliative care? Are there specialists in rural areas?

T5: What are medical and advocacy organizations doing to promote palliative care for cancer patients? How can patients advocate for themselves?

T6: What do you wish you knew about palliative care at the beginning of your experience with a cancer-related diagnosis? For those who have worked with a palliative care specialist, what was most helpful? most challenging?

You can learn more about palliative care by checking these resources:

See you at 9pm ET ( 8pm CT, 6pm PT)  on May 9, 2018!

Dee
#gyncsm co-founder


Wednesday, April 11, 2018

SGO Annual Meeting Research Review and Ask the Doc April 2018

Twenty-four participants shared what they had learned at the SGO Annual Meeting or asked questions about research presented at the meeting during this month's #gyncsm chat. You may find more analytics here. You may find a transcript from the chat here.

We covered a number of different research areas from treatments to survivorship to funding for research.

T1: What were the results of the study comparing minimally invasive surgery (MIS) w/ radical hysterectomy in early cervical cancer. Will the results change practice?

  • "Disease-free survival following minimally invasive procedures significantly lagged behind radical hysterectomies done by open laparotomy," -Pedro T. Ramirez, MD. I found this fascinating.
    • some suggested uterine manipulator use (not assessed in the study), also discussed immature data, early stopping.
    • Any reasons would be speculation. But I think we get bigger tissue margins with open surgery
    • data safety monitoring committee (filled with GYN ONCS) said the study should be stopped
T2: Several studies used targeted therapies to treat #ovariancancer - Which results stood out for you? Were side effects critical in any of the studies?
  • The #PARPi combinations are very exciting - responses and improved outcomes regardless of #BRCA status are encouraging
  • From our Scientific Director, Dr. Deb Zajchowski, “Exciting preliminary results for PARP inhibitors combined with immune checkpoint inhibitors — particularly in platinum-resistant patients.” (@ClearityFnd) 
T3: Which studies presented at the meeting will impact treatment of women with #endometrialcancer #uterinecancer #sarcoma?

  • The combo of everolimus & letrozole was quite successful in #endometrialcancer - this is the 2nd study to demonstrate this
  • Excited re our study (in rodents) of everolimus-eluting IUD pres by @JDottinoMD - could allow pts to avoid surgery in endo ca


  • My friend Matt Anderson, MD, PhD, presented on the genomic profiling of #uterine #leiomyosarcoma from The Cancer Genome Atlas as well as his own lab in Baylor. Data from @ALazarMDPhD was included. This is bigly important for us
  • I was not at SGO but results from the phase 2 trial looking at carbo/taxol vs carbo/tax + trastuzimab (herceptin) in uterine serous CA with Her2/neu overexpression were presented. Improved PFS w/addition of herceptin.
    • Agree... exciting abstract. Several pre-analytical issues that can affect Her2 testing results which will be important to consider for the future
T4: What research on palliative care and survivorship do you think will impact patients lives the most - or that survivors should ask their gyn/onc's about?

  • There was a study that finally measured and estimated rates of post op lymphedema which were much higher than anticipated. If we can measure it we can look for ways to reduce it. 
  •  Overall, I think it has been great to see an increase each year in survivorship studies and talk of long-term care planning and navigators/coordinators. Patients living longer and more emphasis on support.
T5: Once again studies showed less gyn cancer clinical trials and lower funding for gyn cancer research. What suggestions were made to increase enrollment and funding?
  • We MUST advocate for gynecologic cancer funding - write your Congressman and tell them that this funding must be INCREASED!!
  • the photo in this tweet shows how great the need is via @ShannonWestin
  • Outcomes are better for minorities who have access to #clinicaltrials - we need funding to ensure these trials are available 
    • I thought this was an important study. #clinicaltrials are an important part of cancer care. Many in general population still think trials are last resort and consider them "experimental" in a very negative risky way.
  • From our Scientific Director, Dr. Deb Zajchowski, “We need more funding. We also need to get the word out to enroll in the many clinical trials that are already available. There are more than 300 #clinicaltrials that #ovariancancer patients can enter.”
We have several questions/thoughts out there - feel free to now add any additional tweets re: the latest gynecologic cancer research.
  • Here is a link to a study reported at SGO on a vaccine to prevent recurrence in OC https://t.co/phQx2osDcN
  • Can you please tell us a little more about check point inhibitors and what that they’re used for in regards to #Lynchsyndrome cancers
    • Right now - they are FDA approved for any tumor that has MSI (microsatellite instability) - that includes Lynch Syndrome assoc tumors
    • Essentially the MMR in LS makes the cells more susceptible to attack by the immune cells. The checkpoint inhibitors allow the immune system to be more effective.
  • Still on #uterine #leiomyosarcoma: I'm glad the #sarcoma med oncs talked about the many lines of chemo -- I can think of at least 6 -- they might give. Some gyn oncs offer fewer
  • I was very surprised that chemo for early stage endometrial Cancer didn’t improve outcomes. Especially after last years ASCO when it was discussed that it may replace radiation.
  • Great video to share (from SGO) on clinical trial basics! https://t.co/UWjBqxQ584
  • There was a study that finally measured and estimated rates of post op lymphedema which were much higher than anticipate…
Additional resources mentioned during the chat may be found below. 

Patients and caregivers are invited to continue our discussion on the Smart Patients platform at  https://www.smartpatients.com/partners/gyncsm

Join us next month on Wednesday May 9,2018 at 9pm ET for our chat on Palliative Care - When and Why? with guest Christian Sinclair @ctsinclair (#hpm). 

See you then, 

Dee
#gyncsm Co-founder


Resources:


Friday, April 6, 2018

April 11, 2018 Chat - SGO Annual Meeting Research Review and Ask the Doc



Part of our mission as a community for those impacted by gynecologic cancers is to inform and educate our followers regarding new developments in disease screening, treatment and survivorship.

A number of those developments were presented as research studies and practice innovations during the SGO Annual Meeting in New Orleans in March. This 49th Annual Meeting drew over 2500 participants including gynecologic oncologists, oncologists, radiologists, genetic counselors, oncology nurses and patient advocates. The #gyncsm community will discuss research projects and trial results presented at this meeting during our monthly chat on April 11, 2018 at 9pm ET (8pm CT, 6pm PT).

Join us as we cover a variety of research topics including answering questions such as:

What is the impact minimally invasive surgery has had on survival of women diagnosed with early stage cervical cancer? 

What is the latest news on the use of targeted therapies (niraparib, pemrolizumab, Olaparib, durvalumab) in treating ovarian cancer?


What impact could Phase I trial of Vigil® vaccine personalized engineered autologous tumor cells (EATC) have on preventing recurrence in women with ovarian cancer ?

What is the role of palliative care and lay navigators in treating and supporting gyn cancer survivors ?

What is the impact of chemotherapy and radiotherapy on endometrial cancer survival? 

How can we improve funding for gyn cancer research?

What is the impact of participation in clinical trials on minority patients? 

During the chat we will open the discussion to questions participants have for our health care professionals.

Check the SGO Facebook page (https://www.facebook.com/SGO.org/), their Twitter account (@SGO_org and #SGOmtg), or their website (https://www.sgo.org/education/annual-meeting-on-womens-cancer/annual-meeting-media-coverage-3/) for more meeting coverage and potential topics of interest.

We look forward to having you join us.

Dee
#gyncsm co-moderator