Severe and Enduring Anorexia Nervosa

In some adolescents, anorexia nervosa (AN) is of brief duration and remits without treatment or after a short-term intervention, but in others it tends to persist, necessitating long and complex specialized treatments. Unfortunately, about 20% of individuals do not improve with any of the treatments available to date and go on to develop a lifelong condition often associated with severe physical and psychosocial impairment. Unfortunately, there is no consensus among clinicians and researchers on how to define and treat these cases.

Several labels have been used to characterize patients with enduring forms of AN (Table 1). Definitions can help communication between professionals but also stigmatize patients suffering from mental illness. Moreover, the impact of the words used in the definitions can influence how patients and their families experience the disease. Finally, language sends powerful messages on the identity and prognosis of diseases or disorders.

“Chronic” AN is still the most commonly used label applied to enduring forms of AN. However, no unmodifiable biomarkers for AN have been discovered and some patients fully recover after several years of the disorder (two characteristics that should prevent from using the term “chronic”). Moreover, the term “chronic,” and also “treatment-resistant,” may have a profound impact on the management of AN and how the patients narrate their disorder. Other terms less focused on the patients’ possibility to recover label the severity (e.g., “severe”), the duration (e.g., “enduring”, “long-standing”), or both the severity and the duration (e.g., “severe and enduring”) of AN.

Table 1. Labels used to label an enduring form of anorexia nervosa

• Chronic
• Refractory
• Treatment-resistant
• Treatment-refractory
• Critical
• Severe
• Prolonged
• Long-standing
• Enduring
• Severe and enduring

The level of AN severity, according to the diagnostic and statistical manual of mental disorders (DSM-5), is not based on the duration of the disorder, but, for adults, on current body mass index (BMI) or, for children, on corresponding BMI percentile. Not using the duration of the disorder as key severity specifiers for AN is reasonable, as some patients with a short duration of the disorders have an extreme level of severity with dramatic physical and psychosocial impairment, while others with a very long history of AN report a mild or moderate impairment.

However, since also the BMI-based DSM-5 severity specifiers for AN seem to have limited clinical utility in predicting treatment outcome, there is the need to identify alternative clinical variables able to provide more robust prognostic indicators of treatment for AN.

A potential severity specifier of AN is the duration of the disorder. However, although the most common duration criterion for enduring AN is a presentation of the disorder for at least 7 years, the data on the effect of AN duration on treatment outcome is inconsistent. Indeed, some studies have reported negative treatment prognostic effect of the duration of the illness, while others, including a study conducted by my team using intensive “enhanced” cognitive behavior therapy” (CT-E), did not find any effect (Figure 1). In this study, we found that 33% of adult patients with SE-AN (>7 years' illness) had a "full response" at a 12-month follow-up — data confirming that a large percentage of patients with SE-AN can achieve remission from the illness.

Figure 1. BMI and global Eating Disorder Examination (EDE) in patients with and without severe and enduring AN

Source: Calugi, S., El Ghoch, M., and Dalle Grave, R. (2017). Intensive enhanced cognitive behavioural therapy for severe and enduring anorexia nervosa: A longitudinal outcome study. Behaviour Research and Therapy, 89, 41-48. doi:10.1016/j.brat.2016.11.006. Copyright © 2017 Elsevier. Reprinted by permission.

I think that the promising outcome of CBT-E may be partly due to the collaborative style of the treatment, which is focused on “empowering” rather than coercing patients, and includes specific procedures designed to prevent relapse. Moreover, after the assessment, the first phase of CBT-E is dedicated to exploring the nature and outcome of prior treatments, engaging patients, understanding the main mechanisms maintaining their eating disorder, and discussing the pros and cons of change and addressing weight gain. If patients do not reach the conclusion that they need to address their low weight after four to eight weeks, we discontinue CBT-E.

Also, the age of the patients and the number of previous hospitalizations (as a proxy for treatment failure) are inconsistent predictors of treatment outcome.

The inconsistency of all variables proposed in predicting treatment outcome means that to date we do not have a good definition of enduring AN that may reliably inform clinical practice. However, we cannot ignore the fact that there is a large group of patients with enduring AN that are not receiving adequate treatment for their illness. Some of these patients are not accepted, in particular in countries that rely heavily on private health insurance (e.g., United States), or they are treated with strategies or procedures developed for young patients or with coercive methods to increase their weight, often followed by “weight relapse” and a revolving door pattern of admission and discharge.

Unfortunately, there are no easy solutions on how to manage these patients. In my clinical practice, with patients with severe and enduring AN, after the assessment, I dedicate one or two sessions to discuss with them the pros and cons to address a treatment, as CBT-E, oriented to change or a treatment not focused on weight regain aimed principally to improve their quality of life and to maintain a medical stabilization (although it is almost impossible to maintain a stable medical condition if the malnutrition is severe). If the patient, as often happens, decides to address the change, I support their decision, as the available data indicate that it is possible also after many years of illness to achieve a marked improvement and in some cases a remission. However, if patients do not feel ready to change, I support them in managing at best their illness.