Emerging research suggests 75% of individuals with anorexia nervosa make a partial recovery, but only 21% make a full recovery or obtain permanent remission. A new study discovered this fact and more as researchers attempted to obtain a current perspective on outcomes associated with this challenging illness.
As past research has suggested, the investigation confirmed that a family-based therapeutic approach is the preferred intervention. However, the new study also finds that therapy does not work for everyone. An important lesson includes comments from parents that a broader more holistic intervention is needed to promote emotional well-being, resiliency and establishment of a meaningful life.
For the study, University of California, San Francisco investigators delivered an online survey to 387 parents. Eighty-three percent of the parents had children with anorexia nervosa, and 6% with atypical anorexia nervosa — a variant occurring in patients who are not underweight. The remaining parents had children with other eating disorders.
“This study reminds us that we need to work harder to help individuals with anorexia nervosa who are not responding to standard treatment,” said first author Erin C. Accurso, PhD, clinical director of the UCSF Eating Disorders Program and assistant professor in the Department of Psychiatry.
“Full recovery means that patients can find joy in their daily life, free from the physical and psychological effects caused by restrictive dieting.”
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. The study appears in the International Journal of Eating Disorders.
Among the 21% (81 individuals) who made a complete recovery, 94% 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% of patients with anorexia nervosa made complete recoveries, but this study had a preponderance of patients with ongoing 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% 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 well-being 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.
In the study, anorexic participants were a homogeneous cohort with an average age of 18, and a five-year history of the disorder. Ninety percent were female, 94% were white, and 90% 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.