July 13, 2016 Spirituality & Quality of Life Chat

We were pleased to welcome Meredith Gould (@MeredithGould), writer, sociologist, digital strategist and co-founder and co-moderator of the #hlthsp (Health and Spirituality) chat as our guest for this month's chat on Spirituality & Quality of Life. Our chat had over 1.9 million impressions and 36 participants. You can find the complete analytics here.

Below you will find the questions we used to guide our discussion along with a sample of some of the responses. You can read the complete transcript here. At the end of this post you will find resources shared during the chat as well as other information gathered for the chat.

T1: To frame our discussion: What does spirituality mean to you? How might it differ from religion?

• Spirituality for me is an understanding that we're part of something bigger than ourselves & connected in ways we can't "see"
• #spirituality for me is a sense of inner purpose AND feeling connected to the 'universe' at the same time. :)
• Spirituality is the connection to something greater, religion may help us achieve this
• @ASCO -“Spirituality is aspect of humanity that refers to way individuals seek & express meaning & purpose &the way they experience connectedness to the moment,to self,to others,to nature, &to the significant or sacred” 
• Spirituality gets defined in multiple ways but typically refers to realization/awareness of something greater than self. 

T2: How do you personally define "quality of life"? What role does spiritual life or practices play for you?

• QOL covers a number of different aspects of life - symptom burden, pain, able to perform activities, able to enjoy life!
• QOL for me = doing/participating in things which bring value to my existence. Gardening, playing w grandkids, just being still
• QoL for me: Being able to manage gracefully despite health impediments.
• The greater my spiritual awareness, the better my QoL under all (crappy) conditions.
• such a great point - our spirituality can help our coping mechanism and ultimately, our quality of life
• Quality of life is how I feel, what I'm able to do and contribute, being able to be myself, and be a part of the world

T3: What connections have you experienced btwn spirituality and your overall quality of life? Your mental health? Physical health?

• And so to reverse engineer it: if I'm feeling off mentally/emotionally, I check my spiritual condition
• When I am in touch w spiritual practices, I am more focused, centered and feel healthier. I can deal with a lot of BS
• Spirituality, QoL, health all intertwined. Doing my best, then accepting where I fall short.
• Seems like spirituality gets left out of the healthcare convo but for many patients it is a big part of their life
• I zoom in on these spiritual practices of being: willingness, curiosity, empathy, generosity, delight 

T4a: What impact has receiving/living with a critical diagnosis had on your spirituality? How about your spiritual practices?
T4b: What impact has your spirituality and spiritual practices had on your experience with a critical diagnosis and treatment?

• The impact of truly appreciating its inevitable presence and importance in my life. Yes, made me believe in miracles too
• Relative to chronic illness/pain, I find curiosity is a fabulously helpful useful spiritual practice.
• I would say my spirituality got stronger in light of my dx. My wonder at ordinary things - flowers, rain, mountains, oceans
• That's when I started my love for seeing the sun rise and set
• Well, having spiritual awareness and knowing how to enhance spirituality certainly helps when poop hits the fan o' life.

T5: How/who/what supports your spiritual awareness? What are some helpful digital/social media resources for spiritual support?

• Lots of valuable groups (some private) on FB that provide communities of spiritual support.
• Seriously, the best thing was having my first grandchild 3 years ago. Seeing the wonder of life through her eyes.
• I had a good meditations workshop you could make fit with your own spirituality. Art and music are great spiritual practice
• Our #hlthsp group isn't super chatty (on purpose) but a nice place to find resources: https://t.co/iQrSs21q0O
• There are lots of good articles and resources on Mindfulness. Good place to start. 
• Those free Oprah meditations or the app Calm can be a good starting place

The next #hlthsp chat is Wednesday, July 20th and will be a continuation of the Spirituality and Quality of Life discussion started here. We hope you will join us.

Can't wait until the 20th or want to comment on tonight's discussion? We are on Smart Patients at https://www.smartpatients.com/gyncsm.

The next #gyncsm chat will be on Wednesday, August 10th at 9pm ET when we will discuss Shared Decision Making / Patient-Centered Care with the Patient Empowerment Network  (@power4patients, www.powerfulpatients.org) See you then.

Dee
Co-moderator #gyncsm chat


RESOURCES

Desperately Seeking Spirituality by Meredith Gould
The Light Within by Lois Ramondetta, MD and Deborah Sills

Other resources not mentioned during the chat:
ASCO 2016
Spirituality, symptom distress and quality of life of Latin American patients with advanced cancer (LAAdCa): A multicenter study.
http://meetinglibrary.asco.org/content/161925-176

Survey of spiritual quality of life among survivorship and distress guidelines.
http://meetinglibrary.asco.org/content/163893-176

Just what are spiritual needs of cancer patients? An empirical study in a diverse population.
http://meetinglibrary.asco.org/content/164936-176

Spirituality and Palliative Care
http://ecommons.luc.edu/cgi/viewcontent.cgi?article=1023&context=socialwork_facpubs

ASCO Palliative Care meeting 2015Effect of a spiritual care training program on patient quality of life and spiritual well-being.
http://meetinglibrary.asco.org/content/155366-165

Cancer Today Magazine A New Look at Spirituality http://www.cancertodaymag.org/Summer2014/Pages/Defining-Spirituality-Cancer-Patients.aspx

How religious and spiritual beliefs relate to cancer patients:physical, mental and social well-being
http://ecancer.org/news/7609-how-religious-and-spiritual-beliefs-relate-to-cancer-patients----physical--mental--and-social-well-being.php

Spirituality and Quality of Life - July 13th #gyncsm Chat

This month the #gyncsm community will be discussing Spirituality and Quality of Life. Joining us will be Meredith Gould, PhD (@MeredithGould), who co-founded and co-moderates the monthly #hlthsp (Health and Spirituality) chat. Meredith is a writer, sociologist and digital strategist with decades of communications experience in healthcare and faith-based organizations. Her most recent book is titled "Desperately Seeking Spirituality".

The topic questions we'll cover are:

T1: To frame our discussion: What does spirituality mean to you? How might it differ from religion?

T2: How do you personally define "quality of life"? What role does spiritual life or practices play for you?

T3: What connections have you experienced btwn spirituality and your overall quality of life? Your mental health? Physical health?

T4a: What impact has receiving/living with a critical diagnosis had on your spirituality? How about your spiritual practices?
T4b: What impact has your spirituality and spiritual practices had on your experience with a critical diagnosis and treatment?

T5: How/who/what supports your spiritual awareness? What are some helpful digital/social media resources for spiritual support?

In a recent ASCO (Amercian Society of Clinical Oncology) Post article entitled "Integrating Spirituality Into Palliative Care Services: A conversation with Dr Christina Pulchalski MD", Dr Puchalski speaks of a 2009 paper produced after a Consensus Conference which identified points of agreement about spirituality as it applies to health care and made recommendations to advance the delivery of quality spiritual care. That paper makes for an interesting "deep dive" read into this topic.

There was also an abstract on this topic released in conjunction with the 2016 ASCO Meeting: Survey of spiritual quality of life among survivorship and distress guidelines. Its conclusion, "Spiritual quality of life is addressed by current practice guidelines of psychosocial distress, but survivorship guidelines provide little direction for screening or management." Fascinating that spirituality only enters the discussion here in terms of "distress".

We hope you will join us Wednesday, July 13 at 9pmET as we discuss this important aspect of support and care of cancer patients and anyone who has faced a critical diagnosis.

If you'd like to check out #hlthsp, you can follow @hlthsp on Twitter and their chats are held on 3rd Wednesdays at 9pmET. The next #hlthsp chat is 7/20 and the topic will be a continuation of the Spirituality and Quality of Life discussion started this month on #gyncsm.

Dee & Christina
Co-founders #gyncsm Chat

April 13, 2016 Chat : Re-envisioning Ovarian Cancer Survivorship

When Christina and I were talking about establishing the #gyncsm community and chat in 2013, we decided our inaugural chat would be in September (Gynecologic Cancer Awareness Month) and that our focus would be Ovarian Cancer. Since then we have covered many topics of interest to those diagnosed with gynecologic cancers - precision medicine, emotional issues, side effects, risks, hereditary links, nutrition, exercise and sexuality - just to name a few. We have also covered specific gynecologic cancers - vulvar, cervical, fallopian tube and vaginal. It has been over 2 years since we focused our chat topic discussion on ovarian cancer, where each of our personal advocacy work began. When Massachusetts General Hospital and Harvard Medical School’s Dr Don Dizon and Dr Teresa Hagan approached us a few months ago about joining us for a chat on re-envisioning ovarian cancer “survivorship", we jumped at the opportunity.

What is it like to be... in the first few months of a new diagnosis of ovarian cancer? to undergo treatment? to have “No Evidence of Disease" (NED)? to hear you have recurred? These experiences must be different at every point, and for every woman, and in this chat we hope to hear from women at all stages of the experience.

A number of our regular chat participants are researchers, gynecologic oncologists, medical oncologists and radiation oncologists. This is a perfect opportunity for women’s voices to be heard and to share needs, concerns and helpful tips.

Our discussion on April 13, 2016 at 9pmET (8pmCT/6pmPT) will include these questions.

T1a: What does survivorship mean to you? What is it to be an ovarian cancer survivor?

T1b: Do you use the term survivor? If not, what term do you prefer?

T2: What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?

T3: How was the topic of recurrence addressed with you? Did you find it helpful or not helpful at the time - and now looking back?

T4a: What are your needs and concerns now? (After recurrence or As you live past diagnosis and initial treatment of ovarian cancer)

T4b: What issues - physical, emotional or other - currently give you the most difficulty?

T5: What actions have you taken in living past your ovarian cancer diagnosis and treatment? Were you given a Survivorship Care Plan?

T6: Do you personally research new #ovca treatments and info online? Do you follow scientific meetings like SGO and ASCO?

Here are some resources you may view prior to the chat:

American Cancer Society: What Will Happen After Treatment for Ovarian Cancer?http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-after-follow-up

Cancer.Net (ASCO): Ovarian Cancer: Follow-Up Care
http://www.cancer.net/cancer-types/ovarian-cancer/follow-care

Associations between physical Activity and Quality of Life in Ovarian Cancer Survivors
http://www.sciencedirect.com/science/article/pii/S0090825807002508 


We look forward to having you join us on April 13th.

New to tweetchats? Here's our tips:

Tweetchat Basics

Twitter Basics

Tweetchat Etiquette
 
Dee
Co-Moderator #gyncsm chat

Dealing with the Short and Long Term Side Effects of Gyn Cancer Treatments - August Chat

In last year's survey we asked participants what topics we should cover during this year's chats. A large number of survey takers chose Dealing with Short and Long Term Side Effects. Women diagnosed with a gynecologic cancer may have surgery, chemotherapy, radiation or targeted therapies. All of these treatments may lead to side effects - some more common than others. We look forward to sharing information about side effects and ways to deal with them on Wednesday August 12, 2015  ( 9pm EST) .

Here are chat questions:

T1: Let’s start w/ surgery side effects...  Which affected you most? Which do patients say are most impactful? Tips to address?

T2: Now let's talk about chemo. What were your side effects? Which are common? How aware of side effects are patients before start?

T3: What are some of the side effects of radiation? Which did you experience? What are patients most concerned about?

T4: For targeted therapy (TT) - Oliparib, Avastin, etc. - what are the side effects? Different from chemo?

T5: What side effects persist? Have you talked to your provider about them? Other side effects we haven't covered so far?

T6: What impacts are you willing to deal with to get more effective treatment? Have we seen changes in how side effects are managed?

Check out the information on side effects on the Patient Resource (@PRPCancerGuide) website (https://www.patientresource.com/Gynecologic_Side_Effects.aspx).

We look forward to having you join us for a lively and informative discussion.

Dee
#gyncsm co-moderator

Care Beyond Medical Care- February 11, 2015 chat

We were so pleased to have Reimagine (@reimagine_me) with us for this month's Care Beyond Care Chat. Reimagine (https://reimagine.me/) helps people thrive following a cancer diagnosis through skills training, community, a magazine & an "online university".  Sophia Kercher (@sophiakercher), editor at @Reimagine_ME's magazine and Cindy Finch (@5thstepofcancer ), clinical therapist, instructor and writer at Reimagine also joined the chat.

Forty-four participants tweeted 534 Tweets in the hour. Additional analytics can be found here and the chat transcript can be found here. 

These questions guided our discussion:

T1: Many patients feel they lose control of their life while in treatment. What can help? What did you do to take control? 

T2: Did you pamper yourself while in treatment? What did you do? What did others do for you? Tips for those in treatment now? 

T3A: Dealing with a gyn cancer can cause stress. What things do you find helpful in reducing stress? What are some resources?

T3B. Did you ever feel pressured to be "happy" and "positive" ? How did you respond to people who said you needed to be.

T4: Feeling sad & experiencing depression is common for survivors. What helps you deal w/these feelings? Did you bring up w/ doctor?

Please scroll down for a list of resources shared during our chat. 

Remember that patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw .

Mark your calendar for next month's chat No One Ever Told Me... on Wednesday, March 11, 2015 at 9pm EST.  See you then. 

Dee

Co-moderator

RESOURCES:

"A problem with how we treat cancer -- and how to fix it” by Cindy Finch http://t.co/liNCREyWKe

Reimagine Resources:

Reduce your Stress with Meditation: https://t.co/zjp3QcwvMo

9 Reasons to Meditate:https://t.co/j5iTIm9VNB

Finding a New Normal with Cancer: https://t.co/i6Yp2Qp3yS

Why Self Care Isn't Self Indulgent:https://t.co/d8D746W4CA

5 Tips for Taking Care of Yourself When You're a Caregiver:https://t.co/VmL4qnqgX2

Things to Do When You're Stuck at Home:https://t.co/krN9oixv51

3 Ways to Feel Great About your Body in 2015: https://t.co/k5ilCzbgSB

Basic Training- 9 class course in resiliency skills:https://t.co/L3UYy66saB

Yoga Might Heal-Scientists Say So!:https://t.co/fNMywbqwy6

Journal Articles:

A Literature Review of the Social & Psychological Needs of Ovarian Cancer Survivors http://t.co/b5ezCR3Gxf

Resilience, Positive Coping, & QOL Among Women Newly Diagnosed With Gynecologic Cancer : http://t.co/EqWXKmfjms

Quality of Life in Platinum-Sensitive Recurrent #Ovarian Cancer: Chemotherapy Versus Surgery + Chemotherapy http://t.co/n1nUJtZtCp

Quality of life and patient-reported outcomes in #endometrialcancer clinical trials: a call for action! 

http://t.co/ceYxKSy3nF

Improving quality of life in female cancer survivors: current status and future questions. @drdonsdizon http://t.co/JjfYeF9roz

Quality of Life in #OvarianCancer Treatment and Survivorship http://t.co/VJlGtP4sUf

American Psychosocial Oncology Society @APOSHQ info, helpline & resources http://t.co/2Q56PjeKQQ

The Road To Resilience http://t.co/lC7kS6OiH2 via @APA

Can We Maximize Both Value and Quality in Gynecologic Cancer Care? A Work in Progress @ASCO  http://t.co/U7PKVfCdkh

Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs Report https://t.co/UbERG1CLb5

Cervical Cancer Survivorship: Long-term Quality of Life and Social Support. http://t.co/iIYIUANJGK

Profiles in Oncology Social Media Series: @DrMarkham & the #gyncsm chat http://t.co/SWtCB2SGTe

Other online information:

How Not To Say the Wrong Thing- Ring Theory of Kvetching: Comfort in, Dump out. http://t.co/TF4zJoH1uL

Stress Relievers: Tips to Tame Stress: http://t.co/KzjBIfDOAJ @MayoClinic

Example of UPMC's Survivorship Program: (PDF) http://t.co/HQdOn0copQ 

Cancer Depression / PTSD Info from @cancerdotnet http://t.co/YamzPwc89e

Support Connection Announces Its Next Book Group For Women With Cancer | The Yorktown Daily Voice http://t.co/2OufaiSf6F

Vulvar cancer fact sheet via @NCICancerStats : http://t.co/UWD5sBheIT

Books: 

The Human Side of Cancer

Happiness in the Storm

Miscellaneous:

Trips for Young Adults: @FirstDescents, @athletes4cancer 

Music for Meditation: http://mysoftmusic.com/

IMPORTANT UPDATE : Long Term Survivor Study

In May we shared with the #gyncsm community information about a long term survivor study being conducted by The Consortium for Long-Term Survival (A Department of Defense-Funded Project , Massachusetts General Hospital , Michael Birrer PI, Lari Wenzel Co-PI). Read the original post here. 

We recently learned that the study group would now include women who are 8+ year survivors of stage III and IV ovarian cancer ( original study was for women 10+ year out from initial diagnosis) . Please see the image below for contact information. 

Dee
#gyncsm co-moderator

Long Term Ovarian Cancer Study

In case you missed our mention of this study during May's tweet chat we wanted to help spread the word about the Long Term Ovarian Cancer Study. Here are the highlights:

The Study is being done by The Consortium for Long-Term Survival (A Department of Defense-Funded Project , Massachusetts General Hospital , Michael Birrer PI, Lari Wenzel Co-PI). The goal of the study is to identify molecular, cellular and quality of life patterns that are similar in women initially diagnosed with Stage III or IV who achieve long term survival ( 10+ years) and different women who did not survive long term.  The information learned will help to develop new therapies and diagnostic tools for ovarian cancer.

The aims as presented in the project description are:

• Evaluate the genomic features in long-term versus short-term survivors. All cases will also be analyzed for the presence of immune cells and a correlation between these immune cells and genomic features will be studied. This aim will use material collected with the support of other DoD grants to identify biomarkers of ovarian cancers.
• Validate a genomic signature that can predict whether a cancer will re-occur after treatment. This aim leverages an ongoing DoD-funded project that focuses on generating a genomic signature that distinguishes recurrent from non-recurrent early-stage, advanced stage ovarian cancers.
•  Determine the extent to which quality of life measures predict long-term survival of patients with advanced stage ovarian cancer.
• Examine, as an exploratory aim, the potential relationship between quality of life and genomic features predicting disease recurrence.

Survivors who were diagnosed late stage and are close to 10 years from diagnosis may be eligible. Also survivors who recurred during that 10 year period may also be eligible.

I     If you are interested in this project and want to know more about it, feel free to contact the project coordinator, Giulia Fulci, at: Email gfulci@partners.org; Tel (617) 643-5130

       

      Dee 

     #gyncsm Co-moderator