Severe and enduring anorexia nervosa: can risk of persisting illness be identified, and prevented, in young patients?

Review by Craig Johnson, PhD, CEDS, FAED

Kaplan, A. S. & Strober, M. (2019). Severe and enduring anorexia nervosa: can risk of persisting illness be identified, and prevented, in young patients? International Journal of Eating Disorders, 52(4), 478-480.

https://doi.org/10.1002/eat.23019

I have selected to review a Commentary that was recently published rather than a study for this addition of the EDRL.  Increasing attention has been paid to the roughly 20% of patients with Anorexia Nervosa who remain Ill at 20 year follow up.  It is worth noting that an average patient whose illness began at age 16 would be 36 years old at 20 year follow up…a relatively young person by most standards. The term “severe and enduring” (SEEDS) has been coined to refer to this group and a plethora of issues have surfaced about how to define the cohort and what the treatment implications are.

Kaplan and Strober address three of these questions in their thoughtful commentary.

1. Is it possible to identify, soon after the illness begins, those who will maintain a severe, enduring course?  The authors response is brief and powerful: “In a word, no”.  “The published research is limited, and the findings are in conflict”.  So, there is meager evidence to identify those who will develop a more pernicious course of illness.
2. Could early intervention prevent the development of severe and enduring illness?  The authors response:  “Simply put, we just do not know what intervention, experienced early the illness course, with what qualities in the practitioner, possessing what range of clinical acumen, in concert with what life experiences and shifts in attitudes and motivation, will be the ultimate source of recovery”.  So, we lack specific knowledge regarding what types of treatments, in what doses and at what levels of care deliver the best long-term outcomes.
3. How young is too young for considering a palliative approach to treatment in Anorexia Nervosa?  The authors clarify that the term “palliative care” has been extended to include treatments that focus on enhancing quality of life rather than symptom-based treatment, i.e., full weight restoration/abstinence from binge/purge behavior/ abstinence from excessive exercise. This type of treatment is more aimed at managing the illness rather than curing the illness. The authors unambivalently declare that “they would never advise this paradigm for anyone under the age of majority”.   After the age of majority, they emphasize that any consideration of more palliative care should require “seeking consultation from ethicists and persons sufficiently knowledgeable about the psychopathology, natural history, and treatment of AN to guarantee that the decision ultimately rendered honors the Hippocratic Oath: First, do no harm”.  So, any decision to move to a more “palliative/harm reduction” model of care, which usually means having access to less frequent and intensive care,  needs to be very thoughtfully evaluated including being vetted by some form of an ethics committee to safeguard the best interest of the patient.

Why is this Important?

I began my career of hospital-based treatment of ED in 1979.  The 15 year old patients I was seeing then, are now 55 years old.  My clinical experience is consistent with most of the long-term outcome studies, including that about 20% of these patients continue to struggle with their eating disorder and other comorbid symptoms 40 years later.  We are currently unprepared for the surge in this ageing cohort of patients, particularly the increase in their overall health care needs as a result of decades of symptomatic behaviors. We do, however, have to be careful about the timing and extent of moderating care.  Recent data suggests that a substantial number of patients will recover after 10 years of illness and I have personally experienced many patients achieving full recoveries after several decades of struggling.  My search for predictors and commonalities among those who accomplished later life recoveries has remained inconclusive, also consistent with the existing evidence base. While we do need to be practical in evolving treatment strategies for patients with severe and enduring forms of the illnesses, I would like to urge caution in prematurely conveying “hopelessness” to patients and families.  The lack of high-quality evidence and the exciting increase in our “brain based” understanding and treatment of these illnesses suggest that we should not “turn off the porch light too soon” with them.