RARE Daily

Learning to Adjust

April 1, 2020

For Shafali Jeste, one outcome of the COVID-19 pandemic may be a long-term change to the way medical services are delivered.

Photo: Shafali Jeste, associate professor in psychiatry, pediatrics and neurology at the David Geffen School of Medicine at UCLA, and director of the Care and Research in Neurogenetics, or CARING Clinic at UCLA

Jeste, a behavioral child neurologist specializing in autism and related neurodevelopmental disorders, is an associate professor in psychiatry, pediatrics and neurology at the David Geffen School of Medicine at UCLA. She is also director of the Care and Research in Neurogenetics, or CARING Clinic at UCLA.

Like many physician researchers, Jeste has been doing her best to adjust to doing her work during an infectious disease pandemic. She is trying to keep long term research going while also meeting the needs of patients with complex conditions and disruptions to their access to services.

And like many researchers, the pandemic has forced her to scramble to make adjustments where possible to keep long-term studies going. In some cases, that’s meant changing the way patient assessments are conducted, altering protocols where possible so that parents can be interviewed by phone and can fill out questionnaires online. And before doing any of that, securing the approval of the study’s institutional review board.

“I never thought I could be busier. We all are facing this. It’s just quickly having to transition massive systems of a clinical research into remote. It’s a lot of work and we weren’t prepared in the sense that we were not planning for this for months,” said Jeste, who has expanded her hours to make herself more available to patients. “We’ve had to make rapid changes.”

For instance, Jeste has several longitudinal studies underway involving babies who are at high risk for developing autism, have partial disability, or have global developmental delay based on either having a genetic condition or having older siblings with autism. That involves regular site visits as well as imaging studies and behavioral assessments.

As for her clinical practice, instead of seeing patients in her office, she calls them from her home. Like many physicians, she admits to having long-held resistance as she has given up her resistance to telehealth—something not part of her medical school training—and come to embrace it.

“I think of it as like ripping off the Band-Aid. In large healthcare systems, we have all been trained in telehealth because we need to be moving towards making our work more scalable across the board,” she said. “It does not replace in person human contact at all, but it can be helpful, especially in rare diseases where these families are all over the country and there are very few specialty sites for them to be seen by someone who has expertise in whatever their condition is.”

For the families of the kids she treats she said there have been concerns about the threat the virus may represent for their children. These patients are medically complex and have comorbidities, such as seizure disorders. The other difficulty has been that the closing of schools has meant not only the loss of access to critical services and fears of their children regressing, but the loss of structure.

Jeste is hopeful that children won’t suffer any long-term setbacks because of the disruptions they face. She said the key for now is to get them through the immediate crisis, manage expectations, and help parents manage any challenges around severe issues like self-injurious behavior and aggression.

But the experience has opened her eyes to the potential for telehealth, and she believes the experience will accelerate its adoption throughout health systems and the pandemic ends.

“It’s taught me I could do a lot more telehealth,” she said. “Patients appreciate it, especially in L.A. where you have to navigate traffic and parking. It’s such a pain in the neck, especially when you have a child with a developmental disability and challenges. It’s stressful.”

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