by Cynthia M. Bulik, PhD, Christine Peat, PhD, and Eric van Furth, PhD

The COVID-19 pandemic is adversely affecting mental health globally, but there are specific aspects of the pandemic such as lack of structure, lack of access to certain foods, inability to shop for oneself, living in a triggering environment, and inability to exercise that may make the impact of the pandemic especially challenging for people with eating disorders. A collaboration among the UNC Center of Excellence for Eating Disorders, the National Center of Excellence for Eating Disorders, and the GGZ Rivierduinen Eetstoornissen Ursula surveyed over 1000 individuals in the United States and the Netherlands very early in lockdown to assess the impact of COVID-19 on eating disorder symptoms, concerns, mental and physical health, and treatment needs. The survey included both quantitative and free text responses to encourage participants to describe their experience. The full results can be found here in a paper led by Jet Termorshuizen, a PhD student at the Centre for Eating Disorders Innovation at Karolinska Institutet.

Respondents in both countries were on average young adults, but ranged from 16 to over 60. They represented all geographic regions of the United States and all eating disorders diagnoses (with a preponderance of individuals with anorexia nervosa).

Strong and wide-ranging effects on eating disorder concerns and illness behaviors that were consistent with diagnoses were found. For example, those with anorexia nervosa (US 62% of sample, NL 69%) reported increased restriction and fears about being able to find foods consistent with their meal plan, and individuals with bulimia nervosa and binge-eating disorder (US 30% of sample; NL 15%) reported increases in the frequency of binge-eating episodes and urges to binge. In the US, 57% of respondents were anxious about not being able to exercise.

High numbers of participants reported fears over worsening of their eating disorder due to lack of structure (US 79%; NL 66%), living in a triggering environment (US 58%; NL 57%), or lack of social support (US 59%; NL 48%). The vast majority reported that their anxiety levels had increased since late 2019 (US = 80%; NL = 65%), and primarily due to COVID-19. Interestingly, participants were more concerned about the impact of COVID-19 on their mental health (US 87%; NL 88%) than their physical health (US 70%; NL 66%). Concerns were not limited to people who were currently ill. Even those who reported past histories of eating disorders raised considerable concerns about increased risk of relapse due to COVID-19-related factors.

We were particularly interested in participants’ experiences in transitioning to telehealth. Bearing in mind that this survey was conducted relatively early in lockdown when systems were first being put in place for remote care, the majority of respondents reported having transitioned to telehealth services (US 45% of whole sample, 83% of treatment-seekers; NL 42% of whole sample, 80% of treatment-seekers). However, the transition was not without challenges. In our sample, 47% of US respondents and 74% of NL respondents reported that the quality of their treatment had been “somewhat” or “much” worse than before COVID-19. We will monitor this in our follow-up surveys over the next 12 months to see if satisfaction increases over time.

We also observed some country-specific differences. In the US, participants noted concerns over exposure to toxic social media (about COVID-19-related weight gain), increased suicidality and substance use, and whether they would have safe access to higher levels of care. In NL, participants underscored fears of weight gain and specific fears about whether they would be strong enough to recover from COVID-19 if infected.

Some positive take-home messages also emerged. An encouraging proportion of individuals identified also identified positive aspects of the COVID-19 crisis (US = 49%, NL = 40%) including: connection with family and friends, family meals together, more time for spiritual/meditative practices, less stress, and an increase in motivation to recover.

In terms of messages for clinicians and carers, the cry for structure was clear. Although many people across the world are struggling with how to maintain structure during various degrees of lockdown, individuals with eating disorders fear the impact of the lack of structure on their ability to maintain recovery. Clinicians should assess what structures do exist in their patients’ lives and be innovative in developing strategies to help patients structure their daily schedules and meals.

Second, the ambivalence about telehealth services is noteworthy and encourages clinicians to have open discussions with patients about what is and isn’t working in remote care to collaboratively develop optimal approaches to telehealth. Results suggest that it is unwise to assume that remote sessions are equivalent to in-person treatment. Our hope is that this early dissatisfaction reflects the relative novelty of remote care during early phases of the pandemic, and that ratings will improve as remote care becomes more comfortable for both clinicians and patients.

Finally, harnessing the positive changes noted by participants may assist with maintaining motivation to recover and developing strategies for remaining well during this very difficult time. What is clear is that much like others around the world, individuals with eating disorders are suffering during this pandemic, and aspects of the situation are tailor made to challenge their recovery. Collaborative efforts among patients, providers, and carers may help stem the tide of worsening symptomatology and allow patients to continue to make progress toward recovery.

Helpful information about this research for providers and individuals with eating disorders and carers has been made available by NCEED.