At sunrise on March 4, 2020, the same day the first COVID-19 case was confirmed in Houston and one week before the World Health Organization declared the global spread of the disease a pandemic, Callie Piper went to the University of Texas MD Anderson Cancer Center to begin a long day of appointments and tests.
Piper is a 42-year-old corporate event planner who splits her time between Houston, where she works and has two high school-aged children, and Austin, Texas, the home of her boyfriend, Michael Gillespie. In August 2019, stomach pains sent her to a primary care physician, who referred her to a gastroenterologist. The gastroenterologist found suspicious spots on a CT scan and referred Piper to a rheumatologist. Finally, after months of inconclusive tests, Piper received confirmation from a thoracic surgeon on Valentine’s Day 2020 that she had Hodgkin lymphoma, a cancer that begins in immune cells called lymphocytes and is diagnosed in about 8,800 people annually in the U.S. When diagnosed and treated early, the five-year relative survival rate for the disease is about 90%.
Piper’s oncologist at MD Anderson diagnosed stage II disease during the March visit and recommended chemotherapy for treatment. Her friends and family rallied around her, hammering out a schedule to fly to Houston and be with her during infusions and recovery.
“The world had not gone totally mad yet,” Piper says, but it was right on the edge.
Callie Piper, pictured with her boyfriend, Michael Gillespie, took a tablet computer to a medical appointment so Gillespie could participate virtually. Photo courtesy of Callie Piper
Since the beginning of the pandemic, researchers have warned that because people with cancer often have suppressed immune systems, either from the disease or from cancer treatments, they are likely to face a higher risk of COVID-19 infection. People with cancer and COVID-19 also have increased rates of hospitalization and mechanical ventilation, and a greater risk of dying. An early study on patients in China published in the June 2020 Cancer Discovery estimated that people with metastatic cancers were nearly six times more likely to die from COVID-19 than previously healthy people. Another early analysis from summer 2020 estimated that COVID-19 patients with cancer had a 16-fold increased risk of dying from the virus compared to cancer patients who were not infected. More recently, in a study appearing in Cancer Discovery, experts pooled data from 28 studies published since the beginning of the pandemic and found that COVID-19 patients with cancer were twice as likely to die from the infection as patients not diagnosed with cancer. (Cancer Discovery is published by the American Association for Cancer Research [AACR], which also publishes Cancer Today.)
Because of this increased risk, hospitals had to make dramatic changes to lower the danger to cancer patients. By the time Piper returned to MD Anderson less than a week after her first appointment, COVID-19 case counts were soaring in Houston. The hospital allowed patients to bring only one other person to appointments. Masks were optional but recommended. Piper, who prides herself on meticulous organizational skills, saw her plans unravel and felt her anxiety mounting. Friends and family canceled travel plans. “Things were changing fast,” she says.
At her next appointment, Piper had to be screened at the entrance, masks were no longer optional, and she wasn’t permitted to bring a companion. “I was terrified, I didn’t want to be alone,” she says. But she was prepared. The night before, she had fully charged her smartphone and tablet. After her boyfriend dropped her off at the hospital, Piper tested her internet connection while in the waiting room to make sure Michael could be with her virtually, even if he couldn’t enter the building.
During the visit, he watched, listened and talked via her tablet. It wasn’t the same as having him next to her, she says, but it was as close as they could get. “The nurse talked to him as if he was in the room,” Piper says. “He was able to be involved in my care as if he’d been there in person.”
In cancer clinics across the country and around the world, people like Piper have adapted quickly to a new normal—even as they manage an unwelcome and potentially life-threatening diagnosis. Cancer does not quarantine: The National Cancer Institute estimates that on average, more than 150,000 people in the U.S. are diagnosed with cancer every month. This suggests that an estimated 1.8 million people newly diagnosed since March 2020—in addition to the estimated 16.9 million people living with cancer or its aftermath in the U.S.—have had to face the uncertainty and change in cancer care. (The number of newly diagnosed people may be less than 1.8 million because many health care facilities initially paused cancer screening.)
Managing a cancer diagnosis and treatment now means navigating the growing world—and growing pains—of virtual services. “Without question, telehealth has shaped the oncology experience for all of us over the last several months,” said Karen E. Knudsen, executive vice president of oncology services and enterprise director of the Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia, during an AACR virtual meeting on COVID-19 and cancer in July 2020.
The New Electronic Normal
Many cancer patients can relate to Piper’s experience. During the final week of March 2020, telehealth visits climbed by more than 150% compared to the same week in 2019, according to the Centers for Disease Control and Prevention. Doximity, an online network for doctors, estimates that 20% of all medical visits in 2020 were online.
The new cancer treatment landscape includes smartphones, tablets, apps, laptops, cameras and internet connections. Initially, Piper only set foot in the hospital for infusions and blood tests, which were scheduled together to minimize time spent in the facility. Her friends and family joined her via Zoom or FaceTime. For follow-up visits, she talked with her providers from home, screen to screen.
Her oncologist and other providers could see her and share test results in real time. They could discuss side effects and her response to chemotherapy, just as they would in person before the pandemic. She used an online patient portal—a website where she could log in and access services—to send questions to her health care team.
It wasn’t easy for her. “I’m a people person,” she says. “I want to be able to talk to someone face to face, not through Zoom but in person.”
Moving some aspects of cancer care online is not a new concept. The word telehealth broadly refers to the entire spectrum of health care services where information is exchanged electronically, especially via phone or internet. Use of these tools has been growing dramatically since the beginning of the 21st century. Telemedicine is a narrower term. It’s part of telehealth, but it refers specifically to the practice of medicine conducted electronically between a physician and a patient. Virtual clinical visits, for instance, are examples of telemedicine.
Even though some patients still prefer in-person visits, the demand for online services has skyrocketed. At Jefferson Health in Philadelphia, for example, the number of patients asking for virtual visits during the first month of the lockdown rose from about 10 to 15 per day to more than 200. Similar shifts in patient demand—and provider offerings—have been happening everywhere.
“We had to change our approach to patient care,” says oncologist Konstantin Dragnev at the Dartmouth-Hitchcock Norris Cotton Cancer Center in Lebanon, New Hampshire. Those changes, he says, included scheduling less frequent in-person visits for drug administration or imaging. They also included identifying patient visits that could be moved online. “Some symptoms are easily assessed by video, like skin rash,” he says. “Others are difficult to assess virtually—pain, breathing, changes in lymph nodes.”
For Dartmouth-Hitchcock Health, which has multiple medical centers in New England, that also meant switching to better-performing technologies. “Our prior platform seemed to perform well when we were doing 10 telehealth appointments per day pre-pandemic, but it had challenges when we went to 2,600 telehealth appointments per day across our health system,” says physician Kevin Curtis, who directs the network’s telehealth program. The number had decreased by the fall, he says, to about 800 telehealth visits daily.
A major reason that cancer centers and hospitals were able to quickly offer more telehealth services is that early in the pandemic, the U.S. government loosened restrictions on these options for Medicare patients, and state medical boards temporarily allowed broader use of telemedicine visits, says urologist Neema Navai at MD Anderson, who works on the hospital’s virtual care model. Previously, the Centers for Medicare and Medicaid Services only covered virtual visits for people living in rural areas with a health care shortage, and the visit had to be conducted at a medical facility. The new Medicare guidelines, made official in spring 2020, allowed patients to access online services from anywhere, including their homes. The new guidelines also allowed providers to bill for virtual visits at the same rate as in-person visits.
Many states broadened the menu of telehealth services for which people on Medicaid would be reimbursed. Medicaid is partially funded by the federal government but administered by the states. All 50 states have enacted new policies to enable patients to reach providers virtually, but state-specific regulations vary. Many private insurance companies began covering virtual visits, including visits related to cancer, during the pandemic.
Social worker Gregory Gerber, who directs oncology support services at Sidney Kimmel Cancer Center in Philadelphia, noted during the July AACR meeting that telehealth options made many patients more comfortable. “There are definitely patients who prefer face-to-face visits, but many patients have expressed tremendous relief at being supported through telehealth and not having to come into the city and take what they perceive as additional risk,” he said.
In Houston, Navai says he’s seen patients welcome virtual engagement during cancer treatment and follow-up surveillance. “Clearly, these are really stressful moments in someone’s life,” he says. “Having this level of connection with their provider is phenomenally important.”
Telehealth is reshaping the way people receive cancer care. Clinicians are finding ways to provide the same quality of care as they would in person, while patients adapt to the new normal. Here are a few ways to optimize your virtual visit:
Find out what to expect. When you schedule your appointment, ask what parts of treatment can be done virtually and when in-person visits will be necessary.
Check your connection. A productive online visit with your oncologist requires a trustworthy internet connection. Many institutions will schedule a preliminary call with a nurse before an appointment to make sure you have access to the right technology and troubleshoot any problems. If you have questions about your devices or Wi-Fi, ask for help.
Prepare. Just as with an in-person visit, prepare questions in advance.
Get your people on the call. Friends and family can virtually attend appointments or even keep you company during treatment. “Family members often want to be actively engaged,” says urologist Neema Navai at the University of Texas MD Anderson Cancer Center in Houston. “This is a unique situation, and they can often help you with difficult scenarios.” Some videoconferencing services allow unlimited participants.
Consult the recording later. You can often record the virtual visit and watch it later to refresh your memory. Many cancer centers also record the visits and make them available.
Even with telehealth, you have choices. Callie Piper, who recently finished treatment for Hodgkin lymphoma, says some things shouldn’t change just because many appointments have moved online. “You are with your body 24/7,” she says. “If you feel dismissed or ignored by your doctor, you don’t have to stay with them.”
Find a care team you trust. “You have to have faith that they’re looking to help or heal you in the best way possible,” Piper says.
A Potential Game-Changer
Early studies suggest that patients are embracing telehealth technology. An analysis of more than 1,700 cancer patients surveyed at Houston Methodist Hospital who were offered telehealth video visits, published in the January 2021 issue of JCO Oncology Practice, found that 84% opted for the virtual setting. They found that patients who elected to keep in-person visits tended to be older, live in low-income areas and not have commercial health insurance. Of the patients who engaged in telehealth care, more than 90% were satisfied with the experience.
Piper says she had her doubts. “I was concerned at first that the level of care would be diminished,” she explains. But as her treatment progressed, she found herself comforted by the instantaneous access to her health records. She could see which doctors had accessed her information and what they had noted. She installed an app that allowed her to send messages to her doctors at any time. “I could send a question at 3 in the morning and have a response later the same day,” she says.
Before her virtual visits, someone from the hospital called to ensure that her internet connection was adequate, and that the audio and video worked correctly. “As long as someone has a good connection and a tiny understanding of how to operate a website, it’s great,” Piper says.
For people who live in a big city like Houston, a good Wi-Fi connection is easy to come by. But for people in rural areas—the same people for whom telehealth was envisioned as a way to bridge gaps in access—the transition to virtual care hasn’t been as smooth.
“Many of our patients face the challenge of living at a considerable distance from the cancer center,” says Anna Tosteson, interim director of the Dartmouth Institute for Health Policy and Clinical Practice. But up to half of people who live in the remote areas served by Dartmouth-Hitchcock lack adequate access to broadband internet services, which means they can’t take advantage of all the audio and video services. Finding a way to reach such patients with telehealth, Tosteson says, remains a challenge across the country.
At the same time, Curtis notes that surveys of people who have made virtual visits to Norris Cotton show satisfaction similar to that for in-person care, with more than 90% of patients selecting the highest possible rating for the visit, the provider and the staff.
The future of telehealth for cancer care is uncertain, as it remains unclear whether insurance companies and Medicare and Medicaid will continue to reimburse providers for virtual visits. But Navai says the pandemic has revealed a vast untapped potential for using technological tools—not only to protect against the risk of coronavirus infection, but to improve the experience for patients.
“If there’s any good that comes out of a crisis, it includes both knowledge and experience, and we’ve gained a tremendous breadth of both of those,” Navai says. “We can now really see where the value is.” The sudden need for telehealth has demonstrated its potential to ease the financial toxicity that comes with traveling to a cancer center, staying at a hotel and taking time off from work. “We have the ability to bring care to where patients reside.”
Piper, after her initial hesitation, fully embraced the virtual experience. “For me, telehealth was a huge time saver. And a big energy saver,” she says. “You don’t have a lot of energy when you’re being treated, and this made it easier to have a connection with my doctors without having to get up and drive to a medical center.”
After chemotherapy, she says, she was able to virtually connect with a counselor and providers of integrative care like acupuncture and massage therapy. When she worried that she was experiencing hot flashes, she was able to talk through her symptoms virtually with an endocrinologist. She also met online with a cardiologist and an exercise physiologist to develop a plan to rebuild her heart and muscle strength.
On Aug. 26, 2020, Piper finished her chemotherapy regimen. Per MD Anderson Cancer Center’s tradition, she was invited to ring the large brass bell in the infusion clinic. But it was 2020, after all, and Hurricane Laura threatened Houston. Piper quickly had to reschedule for earlier in the day, but when she rang the bell, more than 50 of her friends and family were there with her, watching virtually as it happened. “That’s something no one would’ve thought of before this,” she says. “All these people joined by Zoom. My best friend was filming. And we could watch it all later.”
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March 24, 2021