Heather was 14 years old when an eating disorder took over her life. Twelve years and one global pandemic later, mandated shelter-in-place orders terminated the in-person care she had come to rely on. “As soon as Covid happened, I wasn’t able to go into the clinic anymore to meet with my clinicians,” she says of the team of doctors, therapists, psychiatrists, and nutritionists who often work collaboratively in traditional treatment settings. “Outpatient treatment was four days a week. After I finished, I went from a lot of contact to just having one appointment once a week—that’s something I really struggled with.” With many medical facilities indefinitely closed, there was only one practical option: Head to the App Store.
In February, Heather, who asked to be identified only by her first name, downloaded Recovery Record, perhaps the best-known eating disorder treatment app. Launched in 2011, the app uses cognitive behavioral therapy (CBT) strategies to help users track their moods and meals, and digitally links them to clinicians for extensive, remote care. Often used to treat psychological issues ranging from depression and anxiety to addiction, CBT helps change harmful thought and behavior patterns through techniques like goal-setting, positive self-talk, and journaling to identify automatic thoughts that could be leading to problematic behaviors. It’s considered one of a few “evidence-based treatments” for eating disorders, meaning there’s been extensive research to demonstrate its benefits.
When applied to an app, it means asking people to track their thoughts and actions. “I used the app daily to connect with my treatment team, record my meals, snacks, thoughts, concerns, issues,” Heather says. “We used this so that they could keep an eye on how I was doing and then summarize the previous week over a weekly Zoom meeting.”
Heather says any time she experienced something particularly stressful, she’d make note of it in the app’s Thoughts section. “Sometimes I would add photos as a reference to what I was talking about, and I would leave questions and notes that [my team] would respond to within a 24-hour window, usually,” she says. “It worked as an outlet for any immediate stress or concerns as they were happening, which I would then be able to process with staff once they’d seen it.” The app also sent regular reminders for Heather to eat and track her meals. “Sometimes, as a routine, I would end the day by spending time on the app and just summarizing any part of my day I’d left out,” she says.
Recovery Record cofounder and CEO Jenna Tregarthen says her free app is used by over 10,000 eating disorder care providers and that, since the start of the pandemic, use is up among practitioners by 25 percent and among individuals seeking treatment by 30 percent. “This is a time when so much is out of our control, and people are experiencing heightened stress,” she says. “Essential freedoms are gone, there is uncertainty about the future, the distance felt between loved ones is great, and our days (and mealtimes) lack the structure they once had. This system of upheaval is leading to the widespread experience of stress, depression, and anxiety. For many, eating is a form of control, a coping mechanism to manage this stress.”
Eating disorders are tough to treat, and there’s no single method that’s effective for everyone. The most well-known disorders—anorexia, bulimia, and binge eating—are thought to be influenced by biological, psychological, and social factors. Of the estimated 5 million people who struggle with clinical disorders in the US, “we’ve found that less than 20 percent of individuals with eating disorders are in treatment,” says Ellen Fitzsimmons-Craft, an assistant professor in the Department of Psychiatry at the Washington University School of Medicine. “Even among the small minority who have access to care, it’s unlikely that most have access to specialists trained in eating disorders. Covid has absolutely underscored the need for these kinds of options—now there is virtually no access to face-to-face care.”
The science of providing health care at a distance is imperfect, although it’s in increasing demand during the pandemic. A study published earlier this summer in the International Journal of Eating Disorders by researchers from the University of North Carolina at Chapel Hill and Leiden University in the Netherlands found that people with anorexia are reporting increased food fears and restriction; people with bulimia and binge eating disorder are experiencing increased behaviors; and anxiety is generally on the rise for people with eating disorders. While some have been able to keep in touch with their treatment teams via phone or Zoom calls, the study indicates that those methods aren’t very effective—47 percent of US respondents said the quality of their treatment had been “somewhat” or “much” worse than usual since transitioning to telehealth.
A new meta-analysis from researchers at Deakin University in Australia found that, in general, apps and online programs that deliver remote therapy are a promising approach, but improvements are still very much needed. According to lead author Jake Linardon, web- and mobile-app-based interventions produced “modest reductions in core eating disorder symptoms” like bingeing and modest reductions in risk factors like body image concerns. But these methods have limitations.
“A big problem with these interventions is that people find themselves not engaging in them for very long periods, and thus the effects can be relatively short-lived,” Linardon says. “The reason why people don’t engage, or drop off, is because us researchers haven’t been developing the intervention alongside the target population. So we’re not actually sure whether we’re delivering them something that’s easy to use or understand, is engaging and interactive, and meets their needs in terms of targeting the right symptoms for them.” Involving users in developing these interventions, he says, would lead to better health apps.
Cara Bohon, director of the Child and Adolescent Outpatient Eating Disorders Clinic at the Stanford University School of Medicine, says that referrals and inpatient admissions have been on the rise since May. “I can say firsthand that eating disorders are thriving in this pandemic,” she says. But she disagrees with the assertion that telehealth doesn’t work as well as in-person treatment, and points out that it overcomes many barriers to care: geographic location, scheduling challenges, and the cost of renting space for sessions. “Technology also allows us to offer different levels of support based on individual needs, and it allows people to come together and connect,” she says.
Bohon is developing a new body-acceptance program after cofounding the online program Selfina, which consisted of Zoom meetings and self-guided exercises. She says a July study from researchers at Stanford, the Karolinska Institutet, and the Stockholm Centre for Eating Disorders that influenced her work found that when a body acceptance group therapy program was delivered via video conferencing, it was actually more successful than in-person trials of the same program. “Not only were people engaged with the program and the activities, but my speculation is that doing it from the comfort of home allowed them to be more ‘themselves’ in the group, which can improve the connection with others,” Bohon says. “There is also a phenomenon in psychology where you are more likely to remember information in the environment where you learn it. Engaging in therapy from home is likely to capitalize on that.”
Apps have other advantages, too: Most young patients are already using them, and they are easy to integrate into home life. Daniel Le Grange, founding executive clinical adviser for the treatment app Equip, (which just wrapped beta testing a few weeks ago) says that one consequence of Covid-19 for many eating disorder sufferers has been an unexpected return home to shelter in place with family. “Families are probably one of the best assets in helping people with eating disorders to recover, and recovery at home and in your community provides a terrific opportunity to succeed,” says Le Grange, a professor of psychiatry at UC San Francisco.
Equip’s approach is to assign each family a dedicated virtual care team that includes a therapist, dietician, MD psychiatrist, peer mentor, and a mentor who works with the entire family. The company has partnered with insurance companies to provide families with up to a year of covered treatment. (This in itself could be considered a major benefit—according to the National Eating Disorder Association, insurance claims are often denied as people navigate the psychological and physical aspects of treatment on their own.) On average, families participate in five sessions per week—one with each provider—and discuss eating disorder behaviors and symptoms, like weight loss, food restriction, binge episodes, or excessive exercise.
“The past two decades of research have shown that family involvement in eating disorder treatment contributes to more successful outcomes,” says Equip’s CEO and cofounder, Kristina Saffran, referencing a type of evidence-based treatment known as family-based therapy (FBT), or the Maudsley Approach. In contrast to CBT or other individual therapies, FBT relies on the participation of a patient’s relatives and focuses on externalizing the illness—for example, driving home the point that the disorder and the patient are not one and the same. “Eating disorders have strong genetic and neurobiological underpinnings, and where traditional treatments focus on talk therapy to encourage choosing to eat and cease behaviors, FBT recognizes that malnourished brains cannot—versus will not—make these choices, and that compassionate, insistent, and trained families are best equipped to renourish their loved one,” Saffran says.
Tricia, an Ohio mother (who also asked to be identified just by a first name), participated in the beta test to support her 18-year-old daughter who is recovering from anorexia. She says the program provided structure and accountability for the entire family. “We know we still have a road ahead of us to reach full recovery for our daughter,” Tricia says. “Our hope has been renewed, and for that we are very grateful.”
Fitzsimmons-Craft is working on her own digital treatment, too. Originally called Student Bodies-Eating Disorder, the CBT-based program asks users to log meals, communicate with online coaches, and track behaviors like food restriction or “body checking,” a common practice in which a person excessively critiques themself before a mirror, and may also use their hands, tape measures, scales, or clothing to assess their body’s size and shape. In August, Fitzsimmons-Craft published a study in JAMA Network Open indicating that among 690 college-aged women who tried it, those who used the app and web-based program saw a greater reduction in symptoms like restricting, bingeing, and weight obsession over a two-year period than those who went through traditional care at an on-campus counseling center. “These kinds of tools are now here to stay,” she says, pointing out that they’re available 24/7. “While they’ll never fully replace in-person treatment, everyone now sees the benefits and role they can have.”
The Recovery Record staff is currently investigating how to deliver even more immediate care via the Apple Watch. If a user is experiencing an overwhelming urge to binge, for example, they would be able to tap on the app, indicate the severity of the impulse, and immediately receive a reminder to use a practical strategy like “urge surfing,” a mindfulness technique that involves riding the wave of an impulse until it passes. Other coping strategies include distracting the person from a troubling thought, or motivating them—both of which can be accomplished by sending their watch the right GIF.
Tregarthen says this adaptation of the app could be critical for users in need of instant help. “With two taps, you can identify an urge and instantaneously access a surprisingly helpful coping strategy,” she says. “Research is showing that this 20-second micro-intervention can help stave off the compulsion to act on the urge. For someone who is fighting to overcome an eating disorder, this counts for a whole lot. The little victories really add up.”
For Heather, the accountability and easy access of the Recovery Record app in its current form has helped her navigate a particularly challenging time. “There are a lot of resources, and it makes you feel more connected and able to monitor things in a manageable way,” she says. “Most people have a phone on them constantly, so they might as well use it to do something positive for their lives.”
Update 9-29-2020 12:09 PM: This article was updated to correct the status of the online program Selfina.
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