Complex and Atypical Eating Disorders
Stuart B. Murray, Ph.D., Leslie K. Anderson, Ph.D., Walter H. Kaye, M.D
Eating disorders (ED) are among the most lethal of all psychiatric conditions. They are also among the most ‘treatment resistant’ psychiatric disorders, whereby less than half of those treated in specialized treatment trials will recover by the end of treatment. Cumulatively, EDs confer an array of health risks, including cardiac problems, a vastly elevated risk of suicide, structural and functional brain abnormalities. The disorder can also have a very chronic course.
For example, only 40% of those with anorexia nervosa (AN) are recovered 20 years after the onset of their illness (Fichter et al., 2017). This underscores how much the chronicity, treatment resistance, and significant medical dangers of ED warrant grave concern, and spurred by these stark realities, much research has been devoted to improving treatment outcomes for those with ED.
One major and perhaps underreported challenge, however, relates to the fact that almost all treatment trials carefully screen the patients eligible to take part in such trials. In maximizing the homogeneity within between-group comparisons, which in turn allows for stronger scientific conclusions, most investigators will exclude patients with atypical presentations, or those with complex presentations, from treatment development studies. Ironically, these are the very patients who are most in need of improved treatments. More importantly, these are by far the most common type of ED patient. That is to say, very few ED patients present without complexities, comorbidities, or symptomatic atypicalities.
In real terms, what this means is that there is a relative gulf between emerging treatment efforts piloted and developed in carefully screened ED patients, and real-world clinical practice with complex and atypical ED presentations.
This gap between research and practice leaves clinicians and sufferers struggling to figure out how to most effectively utilize evidence-based treatment and achieve recovery. ‘Standard treatments’ may require much modification, and when the stakes are this high, we need to improve our research into, and delivery of effective treatments to people in need. Fortunately, efforts to improve services are underway. Many of the leading clinician-researchers in the field have begun to develop innovative ways of integrating evidence-based treatments for comorbid conditions into eating disorders treatment; adapting traditional treatments for eating disorders for patients of all ages, ethnic backgrounds, and genders; and exploring ways to target atypical symptom presentations.
For too long, ED patients have been stigmatized and marginalized in broader healthcare settings, and it is time that our most marginalized ED patients be ushered out of the dark.
Fichter MM, Quadflieg N, Crosby RC, Koch S. Long-term outcome in anorexia nervosa: Results from a large clinical longitudinal study. International Journal of Eating Disorders 2017; 50: 1018-1030.