It is a relatively well known fact that eating disorders have
a high relapse rate and many people, myself included,
find themselves in multiple intensive – residential,
inpatient, even partial hospitalization – treatments. One
may ask if such intensive treatments really work or if
long term intensive care is just a band-aid of sorts. I know
I’ve had to ask myself, “why is this going to work this
time when it hasn’t worked in the long run before.”
There is even debate in the field on whether residential
treatment actually has evidence supporting its
effectiveness (see Tetyana’s post here). I can speak from
experience that the various intensive treatments I’ve
personally done have saved my life and given me more
perspective, skills training, and support than I could have
had otherwise. However, despite having made
significant changes, I’ve had more than my share of slips
and relapses.
I am willing to bet I’m not alone.
Maintaining change after intensive treatment is a little-discussed topic. (Although it’s pretty important, I think. I mean, making the changes is difficult, but the changes need to be sustainable if the work is going to be worth it!) Cockell and colleagues explored the topic in their 2004 paper.
The article begins by acknowledging the common concern that both patients and treatment providers have when an intensive treatment comes to an end, which is: how does the patient maintain the changes that were made during her treatment [note: this article speaks only of females, I personally am not making that judgement] in an outpatient setting. Despite motivation, there is question about the patient’s “ability to choose non-eating disorder coping strategies when her[/his] distress level runs high.” Furthermore, the transition from treatment to “real life” is inherently destabilizing and stressful, which almost seems to set the patient up for high-risk situations. Thus, “learning more about this critical phase of change [i.e the maintenance of change] is important, as relapse rates in the eating disorders are reported to range from 33% to 63% (Field et al., 1997; Herzog et al., 1999; Keel & Mitchell, 1997; Olmstead, Kaplan, & Rockert, 1994), and repeated admissions to treatment programs are common (Woodside, Kohn, & Kerr, 1998).”
The authors go on to cite several challenges in treating eating disorders that lead to high relapse and readmission rates. These can be grouped into three categories:
- Eating disorders are mental disorders with physical consequences, as such the coordination of mental and physical care is necessary or optimal treatment, however integrated care is not always available outside of an intensive treatment setting, and this may lead to poor prognosis.
- Comorbid disorders (such as anxiety, depression, PTSD) complicate and impede treatment of the ED
- Many patients with eating disorders feel ambivalent toward recovery. Despite negative consequences of the disorder, EDs can serve as a coping mechanism, and in pursuing recovery, the patient loses not only the negative aspects of the disorder but also the functional value of it (which can be quite high).
So, WHAT WORKS?
Although recovery from an eating disorder is an enormous challenge, many individuals do attain partial or full recovery. While it is well understood that the course of recovery from an eating disorder is slow, what remains unclear is an understanding of what factors support a favorable outcome.
A small number of studies in the past several decades shed some light on this, but the work, which is dated anyway (from the late 80′s to the early 90′s!) most definitely left room for further investigation. And so, the present study aims to “identify factors that help or hinder the maintenance of change and the ongoing promotion of recovery during the critical 6 months immediately following eating disorder treatment.”
Cockell et al studied 32 women who had been admitted to (and completed) a 15 week residential treatment center (mean age 27.9 years (with a standard deviation of 10), mean duration of eating disorder was 11.6 years (with a standard deviation of 9)). Diagnoses were made by a clinical psychologist according to the DSM-IV. Prior to treatment, 21 women met diagnostic criteria for anorexia nervosa, and 11 met criteria for an eating disorder not otherwise specified (EDNOS).
Immediately following completion of the treatment program “all 32 reported a decrease in eating disorder symptoms but continued to meet criteria for an eating disorder not otherwise specified [italics mine]”
Specifically, most women had reported reduced behavioral symptoms (including maintaining an objectively healthy weight; no participants met the diagnostic weight criteria for AN) but not reduced cognitive symptoms, thought patterns, and so on..
This isn’t too surprising as the treatment center in this study (as with most others, in my experience) impose weight/behavioral guidelines that are generally adhered to at the facility and cognitive changes are slower to occur (and require, in my experience, more extensive/different/long-term work to change).
Six months after treatment was completed, the diagnoses were reassessed.” At that point, 5 women met diagnostic criteria for anorexia nervosa, 1 met criteria for bulimia nervosa, 21 met criteria for EDNOS, and 5 no longer had an eating disorder diagnosis.” These numbers are consistent with what is generally observed in studies looking at partial recovery, full recovery and relapse (Strober et al., 1997).
To find out what helped or hindered recovery for the women in this study, in-depth, open-ended interviews were conducted with participants in which they were asked to identify what assisted or sabotaged their recovery, in their own words.
Analysis allowed the responses was broken down into specific factors, summarized in the table below.
Table 1: Summary of Assisting and Inhibiting Factors from Cockell et al. (2004).
Cockell et al break their findings down into three working categories: effective coping, social support and higher values. They further go one to provide treatment recommendations on how to incorporate their findings into outpatient treatment to facilitate the transition from intensive treatment to real life. Their recommendations are valid and seem to follow accordingly based on their results.
The basis of most of their ideas seems to be: have a treatment team that communicates with each other, encourages and facilitates building effective social support, helps prepare you for times of distress and works with you on building a life outside of the eating disorder that incorporates values you hold for yourself.
If you’re like me you may be thinking that this sounds like good practical advice based on first-hand accounts of research. You also may be thinking DUH. I’ve, personally, been in solid treatment programs that have incorporated everything mentioned in this study and beyond. I also have a treatment team (currently and in the past) that is well versed in eating disorders, communicate well with each other, with me, AND with my former treatment center(s).
I’ve also relapsed and gone back to treatment. In spite having all of this in place. (And I’m aware that no one on this project said that this is a fool-proof plan, but hang in there with me for a second.)
Although this study is valid, it fails to mention something pretty significant (in my opinion): in order for everything that they cite as “helpful” to in fact be helpful, the patient has to fight for it. Fight really hard. For example, having a treatment team that works with you on interpersonal skills and building meaningful relationships isn’t going to help if the patient doesn’t get out there, be vulnerable and do the work it takes to build relationships. Same with nutritional counseling and coping skills. I learned a lot of things in treatment and I continue to learn a lot of things that would be very helpful in maintaining recovery. For instance, I know that meal-planning is helpful. I know the importance of nutrition. I also know that getting through the anxiety, time and energy it takes to do the plan and eat is sometimes huge. I know I’m not alone.
Bottom line: I certainly think that everything Cockell et al report is useful. But I also think that another HUGE problem in maintaining change coming out of intensive treatment is doing the recovery behaviors long enough so that they become habit, less of a job, more of a way of life. This research cites one way in which that can happen which involves the support of others, but misses the other side of the coin that involves the work the patient must do themselves.
The biggest lesson I learned in treatment this time was after I purged and told the RD at the treatment center. I was expecting to be put on some crazy observation or something and I was already pissed at myself for doing it. She said something along the lines of, “If it wasn’t relieving in the same way it used to be, then I’m sort of glad you did it, what a great lesson to learn in a safe environment. You need to be able to make mistakes and learn from them in a safe way.”
what we know about eating disorders and the effects of starvation on the brain. Hence setting the program up for failure and the individuals for recidivism and relapse.
So Please Share YOUR Thoughts about all
of this!!!