Study highlights importance of parents in defining eating disorder recovery

Reviewed by Kate Anderton, B.Sc. (Editor)Nov 20 2019

Three in four patients with anorexia nervosa -- including many with challenging illness -- make a partial recovery. But just 21 percent make a full recovery, a milestone that is most likely to signal permanent remission.

These results, and more, are drawn from an online survey of 387 parents, of whom 83 percent had children with anorexia nervosa, 6 percent with atypical anorexia nervosa -- a variant occurring in patients who are not underweight -- and the remainder with other eating disorders. The findings are reported in a study led by UC San Francisco and publishing in the International Journal of Eating Disorders on Nov. 19, 2019.

This study reminds us that we need to work harder to help individuals with anorexia nervosa who are not responding to standard treatment. Full recovery means that patients can find joy in their daily life, free from the physical and psychological effects caused by restrictive dieting."

Erin C. Accurso, PhD, first author and clinical director of the UCSF Eating Disorders Program and assistant professor in the Department of Psychiatry

Partial recovery, she said, was defined as some improvement, but still symptomatic in at least one area: physical health, eating disorder thoughts and behaviors, social functioning or mood.

Full recovery predictive of permanent recovery

Among the 21 percent (81 patients) who made a complete recovery, 94 percent had managed to maintain their recovery two years later. "Unfortunately, patients who only achieved partial recovery continued to struggle and were much more susceptible to relapse," Accurso noted.

Previous studies have found that around 50 percent of patients with anorexia nervosa made complete recoveries, but this study had a preponderance of patients with refractory illness. In the current study, approximately half had undergone residential therapy, partial hospitalization or intensive outpatient treatment, and two-thirds received three or more types of psychological treatments. More than 60 percent reportedly received family-based treatment, which is recognized as most effective for adolescent anorexia nervosa.

"Anorexia nervosa is a complex condition with the highest mortality rate of any psychiatric disorder," said Accurso. "We know that families are the most important resource in recovery, which is why family-based treatment is the gold standard for adolescent anorexia nervosa.

"However, treatment doesn't work for everyone. Parents are telling us that recovery needs to be approached more holistically, with treatments that extend beyond eating disorder symptoms to target emotional well-being, cognitive flexibility and establishment of a meaningful life."

The authors also noted that parents are challenging the field's definition of recovery.

"Parents are schooling us on how it should be defined," said Accurso, who is affiliated with the UCSF Weill Institute for Neurosciences. "We found that parents have a much broader view of recovery, which included psychological wellbeing and building a life worth living. Researchers are missing the mark in defining recovery by weight and/or eating disorder symptoms in the absence of these other factors."

Parents reinforced clinicians' observations that physical and behavioral recovery, which includes resuming regular eating habits, precede cognitive recovery, in which patients are no longer plagued by extreme fear of weight gain and body image distortion.

Among the patients -- whose average age was 18, with a five-year history of the disorder -- 90 percent were female, 94 percent were white, and 90 percent lived in the United States, Canada, the United Kingdom or Australia.

In a follow-up study, Accurso and colleagues will look at how weight restoration, including the goal weight set by a patient's clinician, impacts the recovery process.