As someone who suffered a chronic eating disorder for many years, I was considered by many to be too difficult to treat, and to have little hope of recovery. To hear people speak in such pessimistic terms was soul-crushing. Debilitating, awful. To recover, we need people to believe in us and this includes the treatment team. Therefore, I look forward to hearing Prof. Stephen Touyz speak in Brisbane next week, at the At Home with Eating Disorders conference, about new research that offers hope for patients with chronic anorexia. Thank you, Prof. Touyz, and your team, for refusing to give up on your patients, and for coming to Brisbane to explain why.
Professor Touyz, from the University of Sydney, will tackle that big question – is recovery from chronic anorexia possible, and what does recovery mean, anyway? He will discuss how a rethinking of treatment goals can improve results for those people with persistent anorexia, and what these findings mean for people who are suffering today.
Basically, the researchers have found that patients with severe and enduring anorexia nervosa will not only stick with treatments but also make significant improvements with just a slight modification of the standard goals and methods of treatment.
More than 85 percent of those who enrolled in a new, multinational randomized clinical trial trial completed treatment—almost three times the usual retention rate. After eight months of outpatient treatment, patients in both treatment groups reported improved quality of life, reduced symptoms of mood disorders and enhanced social adjustment.
One crucial element of this trial was the decision to reprioritize how the goals of treatment were presented to those enrolled in this study. Treatment of newly diagnosed adolescents and young adults tends to focus on weight recovery. For this study, conducted at the University of Sydney, University of London and University of Chicago, treatment goals were set collaboratively, by the care team and the patient, with less emphasis on weight gain and more on quality of life, reduction of mood disorders, and enhanced social adjustment.
“Our goal was to peel back the negative impact of anorexia and to shift the traditional pressure to gain weight to an emphasis on improving quality of life and overall functioning,” Prof. Touyz, who is lead author of the research, said.
“By refocusing the core of treatment, we were able to engage highly resistant individuals with severe and enduring anorexia nervosa in treatment, circumvent the notoriously high dropout rates and help them make their lives a little better.”
In the ‘too hard’ basket
Patients with severe and enduring anorexia nervosa (SE-AN) are notoriously difficult to treat. Most of them develop anorexia as adolescents and do not respond to treatment. Participants in this study had suffered from severe anorexia for at least seven years, with an average duration of illness of more than 15 years.
Anorexia nervosa has the highest mortality rate of any psychiatric disorder. Most people with SE-AN have been through multiple unsuccessful treatment episodes. Repeated failure leaves them with low motivation and a self image dominated by illness.
After prolonged malnourishment, many of those with SE-AN are disabled and unable to hold a job. They often suffer from neurocognitive, cardiac or liver problems, as well as osteoporosis. Insurance companies frequently refuse to pay for treatment because so few individuals improve.
This study, published online by the journal Psychological Medicine on May 3, 2013, was the first randomized clinical trial for chronic anorexia nervosa. It compared two standard treatments but modified them in ways that made them more suitable for individuals with such a profound and persistent disorder. The treatments—cognitive behavioral therapy (CBT) and specialist supportive clinical management (SSCM)—were altered to focus on retention, improved quality of life and to avoid “further failure experiences.”
The researchers enrolled 63 patients, all female, at two clinical centers: at the University of Sydney and St George’s Hospital, University of London. The average body mass index of study participants was 16.2, with a range from 11.8 to 18.5. (Normal BMI ranges from 18.5 to 25.) The University of Chicago served as the data-coordinating centre.
Thirty-one patients were assigned to CBT and 32 to SSCM. Both treatments involved 30 outpatient therapy sessions over eight months. Patients were assessed at the end of treatment, with follow-up assessments six and 12 months later.
Results from both treatments were comparable, with significant improvements ranging from “moderate” to “large” on many measures. CBT had a greater impact on eating-disorder symptoms and readiness to change. SSCM produced larger improvements in health-related quality of life and depression. Average BMI for both groups increased from 16.2 to 16.8, about 4 percent.
Time for new treatment approaches
“The results were far better than most people in the field would have expected,” said Daniel Le Grange, PhD, professor of psychiatry and director of the eating disorders program at the University of Chicago and the principal investigator for the data-coordinating centre.
“Many of these patients were profoundly ill. The prevailing wisdom is that current treatments have not been effective and patients are best served by refeeding in the hospital setting. This study showed that specific modification of these behavioral approaches could overcome the high dropout rates and lead to meaningful positive change.”
Limitations of the study include a moderate sample size, 63 study participants, and a relatively short follow-up period, 12 months for a disorder that had been present for more than seven years. Despite the limitations, the high retention rate and the magnitude of improvement in most of the outcome measures were very encouraging, especially in the setting of a disorder with poor compliance and limited previous clinical success.
“This study clearly shows that SE-AN patients do respond to, and benefit from, two specialized treatments when done by clinicians with specialist knowledge,” the authors wrote. “This study should provide hope for those suffering from severe and enduring AN as well as stimulate interest in the development of new psychosocial treatment approaches.”
The Australian National Health and Medical Research Council, the NHS Trust (United Kingdom), the Butterfly Foundation (Australia) and the University of Western Sydney funded this study. Additional authors include H. Lacey of St George’s Hospital; P. Hay and B. Bamford of the University of Western Sydney; R. Smith and S Macguire of the University of Sydney; K.M. Pike of Columbia University in New York; and R.D. Crosby of the University of North Dakota. The paper, “Treating severe and enduring anorexia nervosa: a randomized clinical trial,” can be found at: http://dx.doi.org/10.1017/S0033291713000949.