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Chronicity in Eating Disorders: How Do We Define It and What Do We Do About It?

It comes as no surprise that the earlier eating disordered individuals receive treatment, the higher the likelihood that they will make a full recovery. In other words, the duration of the illness is inversely proportional with the likelihood of full recovery.

The problem is that a lot of eating disorders are not caught early. That a lot of people don’t have access to the treatment they need. Insurance will not cover it, their doctors don’t think it is a problem or won’t treat it, or there is simply no space. And even if there is space, and insurance will  cover it, dropout rates are incredibly high and treatment success is meager. The end result? Sometimes it is a success story – a full or partial recovery. But other times, the stories make headlines across the world, and not for good reason.

So then, what can we do about the individuals who don’t recover within the first one or two years of getting sick?

Again, it comes as no surprise that this question has not been explored in much depth in the scientific literature. It is, after all, much easier to study a group of teenagers for a year and then follow-up with the ones that did not drop-out or were kicked-out for a few months afterward.

But what about the patients who dropped-out or were kicked out?

… long-term follow-up studies suggest that a substantial number of AN and BN patients continue to display clinically significant levels of eating disorder symptoms for years and, in some cases, for decades. Robinson summarizes a series of longitudinal studies of clinical cases of AN, which together suggest that after 6 or 7 years of eating disorder duration, the likelihood of people recovering reaches a plateau and fails to reach zero (Theander, 1985; Deter & Herzog, 1994; Fichter et al., 2006; Wentz et al., 2009), although some evidence suggests that such a plateau does not appear until 10–20 years after the onset of the disorder (Steinhausen, 2002).

Of course, no one wants to hear that. I don’t.

The key is to use this knowledge to inform our decisions with regard to treatment, not to apply them to oneself and give up the hope of a successful recovery. Remember there are always outliers, and these numbers are based on group trends in a specific sample.

Sometimes the authors get it so right that I can’t help but quote them at length.

These findings support the well-known clinical observation that a significant number of eating disordered individuals will continue to display eating disorder symptomatology for protracted periods of time (i.e., years) with some ultimately recovering, but others experiencing chronic, lifelong eating disorders that do not resolve.

Unfortunately, the scientific evidence base for such eating disordered individuals who do not respond to initial treatment and experience multiple treatment failures is exceedingly limited.

Consequently, clinicians are faced with the reality that most patients receiving eating disorder treatment continue to receive care well beyond the 6–12 months outlined in most empirically based treatment manuals.

In such situations, clinicians often modify treatment, perhaps address alternative treatment goals, target comorbid complicating disorders, switch to intermittent supportive treatments, or intensify treatments with higher levels of care, all of which are based on clinical decision making with minimal scientific guidance.

Unfortunately, treatments may devolve into relatively unfocused, intermittent, supportive interventions, where goals become unclear and monitoring of clinical status becomes impressionistic and imprecise.

Yeah! What he said! Right?

I’ve talked about treatment of chronic eating disorders before, and the main point boils down to, essentially, lowered expectations.

When you’ve had an eating disorder for 4 months, and you are 13, full recovery is definitely possible. When you’ve had an eating disorder for 30 years, and you are in your late 40′s, well, it gets a lot more difficult. Not impossible. But, difficult. In these cases, aiming too high might lead to continual failure, and a better approach might be to focus on reducing harm and enhancing the quality of life for the patient.

Wonderlich and colleagues review previous work which discusses the issue of chronicity, which I want to share here, and they also address the issue of defining chronicityIt is a lengthy paper, and I am not good with being succinct, but I’ll try my best.

Previous Perspectives on Treating Chronic ED Patients

Hamberg, Herzog, Brotman, and Stasior emphasize treatment alliance, shared goals between the patient and the clinical team, and expectations of treatment-resistance from the patient during stressful times.

Yager recommendations as summarized by Wonderlich et al:

  1. Establish a connection, identify true goals and avoid counter-productive battles over control
  2. Review treatment history, avoid what’s failed countless times, pursue what may seem promising
  3. Multidisciplinary treatment team and avoiddehumanizing, rigidly monitored control battles around eating behaviour” (but not deviate from basic requirements)
  4. Keep options open for psychotherapeutic or pharmacotherapeutic approaches
  5. Include family members in treatment, whenever possible (and I should add, not counter-productive)
  6. “Avoid expensive, time-consuming treatments that have been repeatedly shown to be ineffective or instill hope in the patient or family that is unfounded.

Yager [emphasizes]… the application of humanistic treatment principles that respect the patient’s self-determination and autonomy, but also mandates clinicians to impose interventions in the case of potentially harmful circumstances… [adding] the … recommendation to carefully examine previous treatments that have failed and others that have not been attempted.

Vitousek, Watson, and Wilson recommend an approach that focuses on understanding the reasons and experiences of the patient and their reluctance to change, recommending “a very emphatically oriented, cognitive-behavioural approach that relies of Socratic questioning to promote a collaborative examination of the patients ambivalence about recovery.”

In my opinion, that’s important but to a point. I think that approach is important in order to work together as a team, with the patient, just as the aforementioned authors suggest. But at the same time, I think the approach can only go so far: weight-gain and reduction of symptoms requires hard work, and no amount of talking about feelings and experiences is going to help that, directly. What it will do is help build a trusting relationship between the clinician and the patient. At the end of the day though, I feel that all clinicians are going to have to deal with some level treatment resistance, and if they are not… it is either an outlier or the treatment isn’t working well enough.

But what do I know, I might be completely off the mark here.

Strober’s approach is definitely unique. Namely, he recognizes the important role that personality traits and temperament play in the development and maintenance of the disorder and uses this knowledge to inform his treatment approaches:

He describes the development of AN as a conflict between a temperament characterized by emotional restraint, interpersonal inhibition, perfectionistic standards, and the stresses associated with the developmental uncertainties of adolescence, which is resolved through a retreat into an obsessional focus on weight, eating, and self-control… these traits are thought to propel a person toward symptomatic stability and avoidance of change, which he believes needs to be considered and respected in the treatment of the chronic AN patient.

Precisely because treatment involves change, and some degree of loss of control, the AN patient is compelled to avoid engagement in treatment. Clinicians are advised to avoid aggressive, therapeutically zealous approaches to treatment that promote excessive change and overwhelm the patient.

Strober’s treatment … begins with a thorough understanding of his neurodevelopmental model of AN and a strong reassurance that weight gain will not be a principle objective of the treatment… requires … regular physical examinations and encourages increases in nutrition that do not risk significant increases in weight…. he encourages the patients to develop routines of social activity and engagement in hobbies, intellectual pursuits, and any activity that promotes a sense of pleasure, mastery, or cognitive stimulation.

… meeting adjunctively with family members to teach them about the psychopathology of AN and to provide general support to the family.

Now, that’s an approach that has definitely helped and worked for me, with regard to AN, specifically. Would it work for everyone: no, but nothing will work for everyone. For me, my intellectual pursuits were one of the strongest and main reasons for weight restoration. But, I think that’s probably highly dependent on the duration of illness and lowest weight, too. Of course, some level of weight restoration is important, but I think a sole focus on just that is misguided.

I’ve already discussed the Community Outreach Partnership Program (COPP) before, so I’ll skip that here.

Robinson echoes much of what’s been said by others: long-term eating disorders are serious conditions that affect every aspect of an individual’s life: social, educational, medical, familial, occupational… everything. And they should be treated with that in mind.

The last sentence of this nine page review is appropriate to close off this subsection:

“Presently, however, we know very little about ‘‘chronic’’ patients and the most appropriate approaches to treating this group of patients.”

But What Is Chronicity Anyway?

Professionals just can’t seem to agree. Is it duration of illness? The number of failed treatments? Severity of symptoms? There doesn’t seem to be a consensus. But in general, possible indicators of chronicity include: “duration of 10+ years, extremely limited social life and vocational impairments  poor quality of life, and repeated treatment failures.”

The paper gets a bit theoretical here, but I like it.

First, at a behavioral level, chronicity implies an absence of change. However, an absence of change is a complicated concept. Eating disordered individuals may vary along dimensions of body weight, binge eating, purging, and various cognitions about body, shape, and weight. Frequently, patients will change on a given dimension, but fail to change on another. Consequently, multifaceted assessment of change produces a more complicated clinical picture than simply determining whether the person has an eating disorder or not. Second, it is unclear how long a person must display an ‘‘absence of change’’ along some key clinical dimension before being considered chronic.

I get excited when I see, in the literature, signs that researchers and academics are paying attention to the clinical realities of treating patients with eating disorders. 

The authors also raise the issue of illness duration with respect to age: is someone in their 40′s with a 10-year history of an ED equivalent to someone in their 20′s with a 10-year history of an ED? What about that same 40-year-old with no history of treatment versus a 20-year-old with many failed treatment attempts?

As Wonderlich et al rightfully point out, we need to develop a better understanding of the factors that maintain an eating disorder, in order to develop our understanding of chronicity and more importantly, how to minimize it and treat it when it does occur. 

And this is something I definitely did not think about before:

A related issue has to do with identifying the most useful terminology to refer to this group of patients. Are these individuals’ best viewed as chronic, treatment resistant, ambivalent, nonresponsive, recovering, or some other term? Each of these labels carries meaning regarding a clinician’s conceptualization of the patient, which may impact approaches to treatment.

Treatment Recommendations 

There’s little out there on evidence-based methods for treating chronic ED patients, but that doesn’t prevent anyone from making their own treatment recommendations! These are pretty bread-and-butter suggestions: a multidisciplinary team, long-term but non-intensive support (no more than 1-2 weeks without seeing a team member), working with the patient and the patient’s family, if applicable. 

The emphasis is on the fact that when someone has gone through treatment countless times, unsuccessfully, clinicians really have to think twice before recommending or forcing that treatment onto someone for the nth time. Is it really going to work this time or is it going to antagonize the patient even more?

It seems easier to just make sure that patients don’t become chronic. (It is easier to treat most diseases at the onset, as opposed to the late stages.) Of course, in order for that to happen we need to understand how to tailor treatment for individuals, what factors promote treatment and what factors maintain the eating disordered state?

Even more importantly, we need to make improvements in our healthcare system(s) and how we approach mental health care. But that’s a whole other topic, worthy of its own dedicated blog.

As always, I’d love to hear your thoughts! How do you define chronicity? What kind of approaches would you like to see implemented in treating chronic EDs?

Wonderlich S, Mitchell JE, Crosby RD, Myers TC, Kadlec K, Lahaise K, Swan-Kremeier L, Dokken J, Lange M, Dinkel J, Jorgensen M, & Schander L (2012). Minimizing and treating chronicity in the eating disorders: a clinical overview. The International Journal of Eating Disorders, 45 (4), 467-75 PMID: 22271525

Written by Tetyana

Tetyana is the creator and manager of the SEDs blog. She has an MSc in Neuroscience from the University of Toronto. Tetyana is passionate about science communication and knowledge translation. To get in touch, use the ‘Contact’ form on the website.

Discussion

5 Responses to “Chronicity in Eating Disorders: How Do We Define It and What Do We Do About It?”

  1. I believe the term chronicity is not a well used term and as a sufferer I am particularly against it, as it my eyes it means- without hope-lets give up, they are never going to recover. This just meant I found myself living to this label, reluctant to change for fear that I would not fit in anymore, however now I have removed myself from that label and am changing everyday.

    PS I am only 21 years old and I was deemed chronic- chronic means anorexia is my death sentence… I do want that label, nor should it we handed out willy nilly just so clinicians can ‘give up’ and take the easy route… CHRONIC is the same as NON-COMPLIANT in treatment… I think you should explore that term… is it that a patient is NON-COMPLIANT and does not want treatment thus should be kicked out, or rather is it that a patient is STRUGGLING and needs some guidance and communication to help them make an informed decision, rather than just being kicked out. Tell me how many people can think straight when they are hungry- let alone malnourished- in New Zealand too many sufferers are being kicked out of treatment at BMI below 12!!! the reason because they are non-compliant- what if it is actually non-coherant (that their brain is not well equipped to make decisions). Okay enough of a spiel please feel free to contact me, walkinmyshoes.co.nz is dedicated to redefining eating disorders to create a better understanding

    Posted by Walkinmyshoes | November 12, 2012, 7:50 PM
    • Hi Walkinmyshoes:
      Thank you for your comment. I think the point you raised about chronic = non-complaint is a good one. Certainly when applied to EDs that seems to be the underlying implication. Chronic need not mean non-compliant, and doesn’t if we think about things like cancer, for example.

      “I think you should explore that term… is it that a patient is NON-COMPLIANT and does not want treatment thus should be kicked out, or rather is it that a patient is STRUGGLING and needs some guidance and communication to help them make an informed decision, rather than just being kicked out.”

      Yes, definitely. It is a conversation I’ve had in private with many individuals but haven’t really touched on in the blog. This also reminds of another topic I need to get to, which is caregiver burn-out. It might be related, maybe intimately related, to how clinicians (and caregivers) view their patients, too.

      Again, thanks for your comment!
      Tetyana

      By the way, you wrote “I do want that label” – did you mean “I do not want that label”?

      Posted by Tetyana | November 12, 2012, 8:12 PM
  2. I think different things will work for different people. A once a year check in might be ok for some people and/or in some cases all that they are prepared to do. Some people right or wrong will not like the continual checks when they are out there and wanting to live their lives.
    Someone else might need once a week checks or more.

    I saw this though and i liked it. I liked the bit about keeping the door open and staying in touch. The quote is from Bob Palmer’s 1996 management of anorexia article.

    “Chronicity

    Nevertheless some people feel that the best they can manage is to live some sort of life within, and despite, the disorder. In such cases, the clinician needs to give support while keeping the door open for more ambitious treatment. Simply keeping in touch may be valuable (Yager, 1995).”

    Posted by missr | March 16, 2013, 10:23 AM
  3. After my wife of 58 years had her gull bladder removed 3 months ago & she has had cronic eating disorder ever since. She eats & vomits over & over again & has gone to 3 hospitals including the best in the world, The Mayo Clinic, where she stayed at St. Mary’s hospital & their she found out her kidney has failed & will be taking dialysis for the rest of her life. I’m writing this for HELP. She is wanting to live, but gives me a very difficult time serving her the medicines & especially the Ensure or Nepro she must take in order to receive the nutrition she needs to survive. Right now she is very weak & can hardly walk. Can anyone give me any advice. My Doctor says that when the body rejects food, it’s time to let go of life. Now, I don’t agree with Dr. Death & to willfully stop doing dialysis , in my option, is suicide. I know My Wife wants to continue living, but nothing tastes good to her anymore. Her taste buds are gone & when she eats, her stomach hurts & then we get out the pan to throw up in. She ate asparagus & oatmeal & they stayed down. Does anyone have any ideas. Please contact me. George Dehmer 6126707092. Thanks, My God Bless you.

    Posted by George Dehmer | April 8, 2013, 2:38 AM

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