In 2020, during the height of the COVID-19 pandemic, Kristin Grassi’s world was upended by an entirely different disease. She was diagnosed with a rare condition known as lymphangioleiomyomatosis (LAM) that was causing abnormal tissues to grow inside her lungs, threatening her ability to breathe.
It’s a diagnosis that would be frightening even in normal times. But Grassi now had to contend with her rare disease on top of a rampaging respiratory virus that shut down medical clinics and doctors’ offices, and forced hospitals to stop seeing many patients.
With few options, Grassi and her doctors turned to telemedicine, an emerging option in healthcare that allows doctors and patients to meet virtually. Telemedicine, also called telehealth, had been slowly gaining ground before the pandemic, only to see explosive growth during much of 2020 as it became the only option for many patients and practitioners.
For Grassi, newly diagnosed with a threatening disease, telemedicine became a lifeline, though an imperfect one, she said during a virtual session recently sponsored by the U.S. National Institutes for Health.
“[Telemedicine] was new to me, but I was in a desperate situation,” Grassi said. “I wasn’t really thinking about the pros and cons of telehealth, I was just happy to have a doctor that knew what she was doing.”
It was a situation familiar to many during the early days of the pandemic. COVID-19 forced many patients to adopt telemedicine and telehealth visits during each week of March of 2020 were double that of the same month during the previous year. Recent surveys by National Organization for Rare Disorders (NORD) indicate that, given the option, 88% of rare disease patients chose telehealth appointments, and 70% of them say they want to at least have the option of choosing telemedicine for future appointments.
Still, the light speed adoption of telemedicine, and especially in such challenging circumstances, has led to some growing pains. Not every doctor’s visit can or should be virtual, medical professionals say. Additionally, not every patient has access to high-speed internet or devices, like pulse oximeters and glucometers, which doctors can use to assess a patient from a distance.
When a Virtual Visit Falls Short
For Grassi, one of the main drawbacks of telemedicine was apparent right away. As a new patient, and one with a potentially life-threatening disease, virtual visits weren’t always enough.
“Telemedicine is not meant for an emergency situation or such a newly diagnosed patient,” said Jeanine D’Armiento, director of the Director of the Center for Lymphangioleiomyomatosis (LAM) and Rare Lung Disease at Columbia University Medical Center, and one of Grassi’s doctors. D’Armiento couldn’t listen to Grassi’s lungs, for example, much less provide emergency care if she had serious symptoms.
While virtual doctor’s visits obviously aren’t ideal for anyone in physical distress, telemedicine brings more subtle challenges, as well. One is simply the difficulty of connecting with patients, D’Armiento said.
“You can’t really have those real conversations and connections at first,” she said.
The virtual meetings led to a few awkward moments early on, but Grassi and her family were able to adapt, and they were ultimately thankful to have access to her medical team. Telemedicine being just a text or phone call away was especially helpful to Grassi’s at-home nurse and her sister, who was a caregiver.
Doing some visits virtually also removed a physical burden for Grassi, who relied on an oxygen tank at one point, and had difficulty moving around.
“We were able to really focus on my care and my recovery rather than on logistics,” she said. “So that was hugely helpful.”
Telemedicine Challenges Remain
A 2021 study in the Journal of the American Medical Association on advanced kidney disease patients above age 70 shared complaints about telemedicine. Many patients were worried about the quality of care, both because of the lack of physical examination and because of a perceived lack of connection. Some also reported difficulties using telemedicine, often because of technological difficulties, hearing impairments, or lack of English proficiency.
“People work, and sometimes the only time they can visit is unfortunately running to the bathroom of their workplace,” D’Armiento said. While telemedicine may be helping harried patients, the situation can make it more difficult for doctors to get or give the information they need.
“I think physicians need to be accommodating to patients’ needs, especially now, when people are struggling,” she said. “It’s important for people to make adjustments, for people to accept not the perfect visit.”
While D’Armiento hopes to continue using telemedicine for many patients in the future, she thinks it’s best used as a complement to in-person care. Telemedicine appointments are ideal for follow-up visits after an initial diagnosis, when doctors might be discussing things like genetic testing results or treatment decisions with a patient, she said.
Grassi also plans to keep using telehealth even though virtual appointments aren’t always ideal. Knowing she can contact her medical team at any time with questions is a huge relief and reduces the anxiety and stress that can come with having a rare disease.
“I do hope it’s here to stay,” Grassi said.
