A team of researchers at The Neu Center at SKCC launched a survey to understand the main concerns of cancer patients, and barriers to their care and treatment during the pandemic
As the novel coronavirus has overtaken hospitals, other areas of healthcare have been forced to rapidly shift how they deliver treatment and support to their patients. The Sidney Kimmel Cancer Center (SKCC) – Jefferson Health cares for thousands of patients of different cancers and stages, and has continued to admit new patients during this crisis. While the clinicians and staff at the SKCC heard and saw anecdotes of both positive and negative effects of the pandemic from their patients on their care and wellbeing, it was difficult to understand the full impact of the pandemic on cancer care without casting a wider reach to patients and survivors.
Three weeks into the pandemic, the SKCC’s Neu Center for Supportive Medicine and Cancer Survivorship launched the “COVID and Cancer Survey” with the mission of understanding how the coronavirus pandemic has impacted patients, survivors, or caregivers.
“The survey consists of twenty questions and touches on a range of topics,” says Amy Leader, MPH, PhD, Associate Professor of Population Science in Medical Oncology. “This includes cancer treatment, experiences with telemedicine, mental and physical health, availability of resources, sources of health information, and more.”
“Patient centered research in any form is extremely helpful to understand where gaps in care and service are occurring,” says Brooke Worster, MD, FACP, Associate Professor and Medical Director of The Neu Center. “Especially with so many changes coming at us due to COVID, the best way to understand how we can improve is to get that data from the source – the patients.”
“It was also important to include caregivers and family in our survey and patient programs,” says Janene Palidora, Director of Clinical Operations in Medical Oncology. “I was a caregiver to my dad, I think the way we care for the patient changes the impact on the family as well.”
“In just under three weeks, we had around 1,000 patients, survivors, or caregivers affiliated with the SKCC complete the survey,” says Rebecca Cammy, MSW, LCSW, Supervisor of Oncology Support Services at SKCC. “This is a bigger response than we expected, and it’s a great source of important data.”
Many patients who are currently in treatment reported some disruption in their care, most commonly with preventative scans, or appointments. The survey indicates a significant increase in the number of patients making telehealth appointments, as the SKCC transitions to telehealth for pre-visit consultations to discuss care plans, as well as follow-up visits. One patient reported a good experience so far with telemedicine, saying “I love the fact that I was already set up with the technology to interact with my care team through Mychart. I find it easy to use and very helpful.”
A majority of the respondents said they were “somewhat worried” or “very worried” about getting the virus. This heightened level of concern about infection may be warranted among patients and survivors, who are often older and more susceptible to the virus. About one-quarter of respondents also reported feeling more tense or wound up than in the previous month. Telehealth visits with oncologist-social worker teams have been ramped up to address this anxiety.
With social distancing in effect, some patients reported challenges obtaining groceries, as well as interacting with caregivers and support systems. One patient responded “It has been very hard not having my wife with me for my doctor visit, infusion session and neulasta injections. My wife does appreciate the staff using cell phone to allow her to participate in the doctor visits.”
Going forward, the team plans to collect more responses from the survey and to analyze the data by different demographics, such as active patients vs. survivors, age groups, and gender.
“The preliminary results are already helping to inform patient programming, intervention and support in direct response to what patients and caregivers say they need,” says Gregory Garber, MSW, LCSW, Director of The Cancer Support and Welcome Center. “This has been a guiding premise of what we do at The Welcome Center.”
“Because of COVID-19, we had to make the difficult decision to suspend our in-person support programs,” says Lisa Capparella, MSS, LCSW, Manager at The Cancer Support and Welcome Center. “But we are committed to ensuring that our patients have the support they need, so we’re running a wide variety of virtual programs and workshops online.”
The full list of online events can be found here. Some examples of available programs are:
- Mindfulness Yoga for Patients and Caregivers
- Support Group for Caregivers
- Young Adults with Cancer Support Group
- Mindful Eating and Tips for Grocery Shopping
- Stretching for Stress Relief
- Helping Children Cope with a Parent’s Cancer During COVID-19
- Coping with Cancer and COVID-19
“We know that how we care for patients will forever be changed due to COVID,” says Dr. Worster. “This survey will show us what is most important to our patients and how they manage stressors – it is pilot data for future interventional studies examining innovative care delivery for cancer patients during this time of crisis.”