Recovery: Better Definitions Needed for Persons with Eating Disorders

At the 17th Annual Renfrew Center Foundation Conference, November 18-27, in Philadelphia, clinicians, patients, and eating disorders experts sought to better define “recovery” from eating disorders.

Keynote speech: Toward a better definition of recovery

Scott J. Crow, MD, Professor of Psychiatry at the University of Minnesota and past President of the Academy of Eating Disorders, noted that the standard definition of recovery as the act of regaining or returning toward a normal healthy state doesn’t totally apply to persons with eating disorders, and that current definitions of recovery are problematic. In addition, while one ordinarily thinks of recovery as continuous, eating disorders have many gradations, he said. Another pitfall is using time to define recovery, and choosing the approach that works fastest is to indulge in fantasy, Dr. Crow noted. One more problem with defining recovery is overlooking other comorbidities, he said, adding that 10 to 15 years ago patients were treated and sent on their way even through they had significant problems with anxiety, for example.

How shall we define recovery?

Who defines recovery? Dr. Crow noted that ideally the patient should define recovery because family members, significant others, mental health providers, and primary care physicians all may define the patient’s recovery differently. He added that most studies have focused on eating disorder symptoms as outcomes, and that third-party payers usually use this to define recovery. Dr. Crow said, “Frequency of binge eating episodes and purging is a lot easier to capture than marking changes in cognition.” Focusing on weight as outcome, particularly in anorexia nervosa (AN), is perilous, he said, particularly when it is used as the sole measure of recovery. Quality of life and functional status need to be factored in as well. Dr. Crow said numerous studies indicate that “We need to expand our definition of recovery to add in cognitive symptoms and, very importantly, to look at the functional state of the patient.”

Dr. Crow said that definitions for recovery should be tested, and should be clinically derived, and urged clinicians to continue to ask questions and to examine all diagnostic criteria as well. He cited a recent study by Drs. James Lock and Jennifer Couturier (Int J Eat Disord. 2007; 40:472), in which the outcomes were wildly different, depending upon how “outcome” was defined. If reaching 85% or more of ideal body weight was used as a criterion for recovery, everyone got well; with other criteria, almost none of the patients got well. Diagnostic criteria also need to be examined, and the more they are based upon reasonable research, the more helpful they will become, he said.

“We think we know what improvement means but we may have a different sense of this than the person who is in treatment, and also very different from that of the primary care physician and psychiatrist,” he said.

Helping patients learn to recover from bulimia nervosa

Why do some women recover more quickly from bulimia nervosa (BN) than do others? Dr. Patricia W. DeBarbieri, an eating disorders expert, trainer, and long-term director of counseling services, told the attendees that some clues lie in adult learning, or in helping patients learn how to recover. She described the results of a comparative case study she conducted at the Wilkins Center, Greenwich, CT, which included 24 normal-weight women 19 to 58 years of age. Fifteen women had been recovered from BN and were symptom-free for six months, and 9 women were still in recovery after three months. The study used the Eating Disorders Inventory and an in-depth interview, as well as collection of demographic material.

Twenty women participated in the in-depth interview, which lasted for 60 to 90 minutes. Some of the areas explored in the interview were how the patient graded her understanding of her ability to talk about her recovery, why she chose to recover, and any impediments to recovery. The women also provided information about their treatment, medical history, and family history, as well as information about weight.

Making the choice to recover

One of the major findings of the study was the importance of reflection on experience in recovery, or that reflective learning is very important for recovery among patients with BN, Dr. DeBarbieri said. Another key finding was that viewing relapse as a normal part of recovery and talking about that experience was very helpful to patients.

The level of education and income were higher among women who recovered. Underlying reasons might have been higher motivation, said Dr. DeBarbieri. Low income was an impediment to treatment, she noted, making it more difficult for women to have insurance that would cover part of their treatment. Another factor among women who recovered was a longer term of treatment. One weakness of the study was that it did not include women of diverse ethnicities, she said.

The study also explored reasons that women gave for their choice to recover. Women who recovered reported that they began reflecting on what bulimia nervosa was doing to their bodies. When they began to change the meaning of BN to themselves, recovery could begin, she said. A strong support network was a powerful key to success, and encouragement and hope were importantseveral noted that someone offered them hope at a critical point, when they felt they were helpless. Spirituality was also important for some women, and acted as a bridge from the internal feelings to external expression.

Dr. DeBarbieri also reported that she has found that many people with eating disorders are very concrete, and respond to questions about what they think rather than what they feel. Relapse gives a clinician and patient a chance to talk about what the patient wants, and to explore his or her thoughts about what has happened. This all-important reflection on the experience may help patients move forward to recovery, she said.