Feb. 24, 2000 (Minneapolis) -- A long-term follow-up study of patients diagnosed with anorexia nervosa found that half had achieved a full recovery. That's the good news. The bad news is that the rest of the patients did not fully recover, and some died of the disease. The report was published in the Feb. 26 issue of the medical journal The Lancet.
Little is known about the long-term recovery of persons with anorexia, but researchers at the University of Heidelberg Medical Hospital in Germany recently completed a follow-up study of 77 females who had been diagnosed and treated 21 years earlier. Their results shed new light on the long-term prognosis for people with the disease.
Research suggests that about 1% of female adolescents have anorexia nervosa, an illness described by some doctors as "the relentless pursuit of thinness." Although the condition primarily affects women in their teens and twenties, doctors have reported disorders in children as young as 6 and adults as old as 76. Only about 5-10% of people with anorexia are male.
The women in the study completed psychiatric interviews, physical assessments, and psychological questionnaires, and then were classified as having a good, intermediate, or poor outcome based on standard guidelines for anorexia.
Among the study patients, 51% had a full recovery and 26% were classified as having a "poor outcome." Of these, 10% still met full criteria for anorexia nervosa and 16% died of causes associated with the disease, including infection, dehydration, and suicide.
Researchers also found significant differences in psychosocial factors between the outcome groups. For instance, patients classified as poor outcome missed an average of 99 workdays a year, compared with 40 days for the intermediate group and three days for the good outcome group.
From their results, the researchers developed theories about what could predict poor outcomes. The longer a person is ill before receiving treatment is associated with a poor outcome. Also, inadequate weight gain while hospitalized for anorexia also pointed to a poor outcome. Those who did worse in the long run also had severe psychological and social problems.
"We knew that [anorexia] is very serious and is associated with high mortality [death rate]," researcher Stephan Zipfel, MD, tells WebMD. But the main message from their research, he says, is that earlier intervention and referral to specialized facilities are crucial to ensure better patient outcomes.
According to Anorexia Nervosa and Related Eating Disorders Inc. (ANRED), without treatment, up to 20% of people with serious eating disorders die. But with treatment, that number falls to 2-3%. In addition, they say, with treatment about 60% of people with eating disorders recover.
Persons with anorexia nervosa may display many warning signs including refusal to maintain a normal body weight, weighing 85% or less than is expected for age and height, denying the dangers of low weight, and reporting feeling fat even when very thin.
"If I were a parent of a child, or a spouse of an adult with anorexia nervosa, what this report would provide to me is evidence to use for lobbying for longer and better medical care, even in the face of limitations in health care resources," Cheryl L. Rock, PhD, RD, tells WebMD. "This illness may be more rare than something like breast cancer, but the total cost is enormous if not caught early and managed well." Rock is associate professor in the department of family and preventive medicine at the University of California, San Diego.
Zipfel says it's important that treatment of severely ill patients "be handled by an experienced and multidisciplinary treatment team in a specialty center." ANRED recommends that persons with eating disorders "get into treatment and stay there."
- After a 21-year follow-up, researchers studying 77 patients with anorexia nervosa report one in four had a poor outcome. However, about half had recovered fully from the disease.
- Patients with a poor outcome waited longer to get treatment, failed to gain adequate weight while hospitalized, and had severe psychological and social problems.
- Observers note anorexia nervosa is a serious disease with a high death rate if untreated. Family members and doctors should intervene when people show the early signs of the disease, in order to increase chances of successful treatment.