#CSSMchat summary – Dr Mandi Pratt-Chapman. 25th November 2020

Author: Farah Qasier

“Quality Cancer Survivorship Care & Survivor Experiences Amid COVID-19.”

It’s been a long and challenging year for many, and we are grateful to have had several excellent monthly chats hosted on Cancer Survivor Social Media. Our last of the year took place on November 25th 2020, hosted by Dr. Mandi Pratt-Chapman, who led a conversation about quality cancer survivorship care and survivor experiences amid COVID-19.

As any followers of Cancer Survivor Social Media will know, cancer and its treatment can have long-term effects, meaning that cancer survivors need access to quality follow-up care, as highlighted in this National Cancer Institute resource, and in this Cancer Survivorship E-Learning Series accessible via the GW Cancer Center’s Online Academy.

Pratt-Chapman is Associate Director of Patient Centered Initiatives & Health Equity for GW Cancer Center, and carries out research to build the capacity of the workforce to advance patient-centered care and health equity in oncology. To help improve patient-centered cancer survivorship care, the GW Cancer Center created the Advancing Patient-Centered Cancer Survivorship Care Toolkit. This toolkit, funded by the Patient Centered Outcomes Research Institute, is meant to act as a starting point to help address reported care needs of post-treatment cancer survivors, and consists of many resources, including tip sheets, facilitation guides and a worksheet to help patients prepare for their next doctor’s visit. The toolkit can be found at: http://bit.ly/AdvancingSurvivorshipPlanningGuide2019.

While the toolkit is already in use, that doesn’t mean there isn’t room for improvement. Pratt-Chapman kicked off the #CSSMchat by asking: “The Quality Framework includes engaged patients, information and resources, supportive providers, meaningful communication, care coordination, practical life support, mental health care and a medical home. Is there anything missing?”

Some of the responses included: 

Access to cancer specific exercise rehabilitation programmes!

— Patricia (Sheehan) Ferncombe, PhD (@FERNTRI)

#cssmchat I haven’t looked at all of it, but just glancing at it, are there specific places that mention living with metastatic disease, advanced disease, never post treatment.   Will dive into this later. #oncsurv #metsurv

— Project Life (@ProjectLifeMBC)

I am interested in the idea of the medical home for cancer survivors. What does that look like? #CSSMchat

— Jennifer M. Jones (@jjonestoronto)

Pratt-Chapman described a medical home for cancer survivors as “coordinated care where all records are in one place and your doctor knows and communicates with all of your other providers.” A second chat participant chimed in to ask whether this should all be done online. Are there accessible apps or portals to enable this, which aren’t tied to a single institution? Here, Pratt-Chapman pointed out that this can be done broadly, but that “electronic health vendors are not getting paid by collaborating. The business model needs to change.”

Currently, Pratt-Chapman is leading a study to learn about the experiences of cancer survivors and providers during the COVID-19 pandemic. For example, recent studies have already demonstrated that there has been a significant decline in the number of new cancer diagnoses, where delayed cancer diagnoses and treatments could mean worse outcomes. The GW Cancer Center has already developed a tip sheet for coping with COVID-19 to their toolkit. 

In the #CSSMchat, Pratt-Chapman asked cancer survivors: what has been your biggest challenge as a cancer survivor during the COVID-19 pandemic? For healthcare providers, what has been your biggest challenge in caring for survivors during the pandemic?

As a #cancersurvivor it was the unknown of when I would get the MRI follow-up I have every year. I had my MRI 2 months later than what it was expected because they stopped imaging across my province because we were the epicenter of the pandemic in Canada

— Vicky R (@mtllatina)

As a result of COVID-19, our @PMCancerRehab team switched to virtual care in March. While we have started to see some patients in person, most continue to be on-line. #CSSMchat

A total of 1968 virtual patient @PMCancerRehab visits were completed during the first 90 days of the pandemic!  #CSSMchat

The majority of program visits could be adapted to virtual delivery, with some modifications. Interestingly, virtual care demonstrated an increase or maintenance in the # of completed visits by appointment type vs in-person care, with attendance ranging from 80-93%. #CSSMchat

— Jennifer M. Jones (@jjonestoronto)

While COVID-19 has disrupted multiple aspects of cancer care, it has also introduced new opportunities, such as the wide-spread provision of telemedicine. Pratt-Chapman led a survey of U.S.-based cancer care survivors and providers to ask about some of the challenges associated with accessing health care services, and their experiences with telemedicine. Results will be shared in 2021. Similarly, she asked cancer survivors tuning into the #CSSMchat: how has the pandemic affected your access to needed healthcare services?

Yes my appointment with my fertility clinic got cancelled. Chemo made me infertile and that appointment was booked 3 months in advance. It was a hard pill to swallow, but I understood the situation.

— Vicky R (@mtllatina)

Thankfully, it hasn’t really affected my screening much, although I did delay all my follow up visits (Aftercare, Onco, Derm, etc) by a few months.

— Diana Merino Vega (@d2merino)

Everything for my still-metastatic still-alive #survivorship #kidneycancer f/u care including imaging, web/telephone consults has gone very smoothly (Toronto) #CSSMchat

Only difficulty now would be the timing of any intervention: better to wait things out until the spring vs taking risk of inpatient care during 2nd wave? Inclined to wait. #CSSMchat

— Deb Maskens (@DebMaskens)

Pratt-Chapman then shifted to the topic of resilience during the COVID-19 pandemic, suggesting a number of tips and resources, such as exercising regularly, using telemedicine where possible, staying connected and cultivating mindfulness. But just as importantly, Pratt-Chapman noted that sometimes resilience comes in the form of accepting our negative feelings and letting them pass through us, noting a relevant piece from The New York Times.

To end, Pratt-Chapman asked cancer survivors: what has been your biggest source of resilience during the pandemic? Similarly, what strengths did healthcare providers draw from to get through this challenging pandemic?

Exercise… even going out for a walk has been crucial. Definitely felt the need for it and how important it was for my physical & emotional state when we had to quarantine! In the future, i want to remember how much I needed exercise so i don’t take it for granted #CSSMChat

— Diana Merino Vega (@d2merino)

I understood being healthy was a privilege. So when I lost my job in April, I decided to help in a nursing home in Montreal and worked there for 2 months. Surviving cancer made me fearless but more empathetic and resilient, I was scared of catching covid19 but I needed to help.

— Vicky R (@mtllatina)

Try free app: http://covidcancercare.com Great for decreasing stress and creating coping strategies in people after a cancer diagnosis who have anxiety and concerns during #COVID19. @mark_elfers @DianneSF

— Lisa Kennedy Sheldon, PhD (@lisaksheldon)

To help our @PMCancerRehab team we have hosted team cooking classes, meditation and yoga. We are starting weekly virtual coffee breaks. #CSSMchat

— Jennifer M. Jones (@jjonestoronto)

“I appreciated hearing from survivors and other researchers during the chat,” says Pratt-Chapman. “Specifically, I appreciated the questions about how aspects of quality cancer survivorship care fit into the Framework I shared. Peer and community dialogue is critical to define and refine frameworks to be useful in practice.”

Moving forward, how will this chat inform Pratt-Chapman’s work?

“I think there is a lot of potential to share research findings via social media to reach people outside the “ivory tower,” she said. “I make a concerted effort to share my research findings across various social media platforms; however, facilitating a structured dialogue has potential for higher impact, particularly with the ability to dialogue with others.”

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