Treating Severe and Enduring Anorexia Nervosa–Finally, a bit of hope?
In March, I attended the London International Eating Disorders Conference. This past weekend, I finally organized the last of my papers from the conference (After the conference, I was on vacation and then at a journalism fellowship, so I wasn’t home to do any organizing, hence the long delay) and found some notes I took from a session on a new treatment for severe and enduring anorexia nervosa. I had just started to write-up this post when I saw that the clinical trial results had just been published in Psychological Medicine (Touyz et al., 2013).
So, hot off the presses, here is the lowdown on the study.
What is severe and enduring anorexia nervosa?
For the purposes of this trial, SE-AN (as it is abbreviated) was defined as meeting the DSM-IV criteria for AN (minus the amenorrhea criteria) for at least seven years. It is unclear whether they might have not met DSM-IV criteria for short periods during hospitalizations, etc. Although that seems to me to be an arbitrarily low cut-off point for SE-AN, the researchers explained that most other treatment trials for AN have not attempted to treat patients who have been ill for longer than seven years.
The authors explained that
Such individuals merit research attention as they have the highest mortality rate of any mental illness, and they suffer significant medical co-morbidity. Patients with SE-AN also have high levels of disability, often being under- or unemployed, supported by health benefit plans, and they can become a significant burden to parents, carers and health-care funders.
The researchers compared two treatments: CBT for AN and Specialist Supportive Clinical Management (CBT-AN and SSCM, respectively). Some differences between the two treatments in the table below:
|Patients receive motivational enhancement therapy strategies to improve motivation/readiness for change||Psychoeducational material is given and discussed to increase patient motivation|
|Treatment and sessions are highly structured and largely therapist directed||Treatment and sessions are less structured and are based on what the patient brings to the session|
|Eating behaviors are directly challenged through use of behavioral experiments and cognitive strategies||Changes to eating behaviors are encouraged using advice and education around nutrition rather than speciﬁc strategies|
|Patients are given homework in each session which relates to session content and is always followed up in the next session||No homework is ever given. Patients may be sent away with educational material, but it is not necessarily raised in the next session|
Important for this trial: weight restoration was specifically NOT emphasized. Glenn Waller piped up and noted that CBT-AN without weight gain is like a pineapple upside-down cake without pineapple. But weight gain was not the primary end goal of the trial. At the outset, the researchers didn’t even know if you could do a trial of treatment for SE-AN, given high levels of dropout, the chronicity of the disorder, and the general idea that this population was highly resistant to treatment.
The primary goals of the study were improving quality of life, mood symptoms, and social adjustment. Secondary goals were improvements in ED psychopathology, BMI, motivation for change, and healthcare burden.
Treatment sites in London and Sydney randomized 63 females with SE-AN into either CBT-AN and SSCM. The patients had to be medically stable and monitored by a physician. The researchers tried to randomize equally based on AN subtype and whether they were using psychiatric medication. Participants received 30 treatment sessions over 8 months. The average participant was 33 years old and had been ill for over 16 years. Roughly 60% had never married, 28% had children, and 28% were employed full-time. Although the paper itself didn’t present this information, my notes from the London session indicate that 61% were unemployed and 51% reported no social relationship. During the study, seven people were hospitalized and one of these refused further treatment and died. There was no information on previous treatment, number of hospitalizations, or highest/lowest illness and pre-morbid BMIs.
These were people whose lives had been blighted by AN, no doubt.
Surprisingly, 85% completed treatment and 80% participated in 6- and 12-month follow-up studies. For a treatment trial of AN, this is huge. Given that dropout rates frequently exceed 50% in trials of individual treatment of adult AN, this level of completion alone is significant. Granted, they weren’t making patients change what they feared most (eating and gaining weight), which generally causes people to bolt, but even so.
At the one-year follow-up, there were modest increases in BMI- about 0.5 or so. The patients were still significantly underweight even with the increase. Interestingly, they showed significant improvements in readiness to change, quality of life, depression symptoms, and social adjustment.
The authors conclude:
The ﬁndings of the current study suggest that CBT-AN was superior in reducing core ED symptoms at follow-up, but that both CBT-AN and SSCM contributed to improvements over time in health-related quality of life, body weight, depression and motivation to change. The magnitude of these changes ranged from moderate to large. The ﬁndings of this study should provide hope for those suffering from severe and enduring AN and also stimulate interest in the development of new psychosocial treatment approaches.
My take on the study
Given that SE-AN is generally not regarded with much hope by the treatment community (in many cases, health systems and insurance companies flat-out refuse to treat these patients, saying there’s nothing more that can be done. As this study shows, that’s total bollocks.), that researchers could keep 85% of sufferers in a nearly two-year-long study is a dramatic improvement. I think it also shows that even patients with severe, long-term anorexia frequently desperately want to get well. They avoid treatment because they’re afraid, not because they’re stubborn brats.
In the London presentation, one of the authors noted that the low dropout rates in the study may be attributed to the fact that therapists worked on areas that the patient deemed important. These areas, they noted, could then be potentially leveraged into behavior change. I think that’s important.
Weight gain is (and probably should be) an important goal of AN treatment. But it shouldn’t be the only goal. In an ideal world, the healthcare system and friends and family would all help a patient get to a weight that’s appropriate for him/her based on their previous development, and then help them learn skills to help them stay there. That, like, never happens. Even people who do well in recovery often have a treatment history that is littered with times that treatment has failed them (note: they did NOT fail treatment). Full weight restoration wasn’t emphasized early on. Family was unnecessarily alienated and pushed out of treatment.* Hospitalization came too late and discharge too early. Follow-up care was non-existent. Ditto for other types of social support. These are things that we know can help people and we just don’t do it. That’s the thing that totally, utterly frustrates me.
I have mixed feelings on the fact that weight gain wasn’t emphasized. On the one hand, I find that problematic in that you’re letting people languish in their illness. You can’t recover from AN if you don’t gain weight. On the other hand, given that many of the people in the trial didn’t have much (if anything) in the way of people to support them in their endeavors to get well, asking someone who had been seriously ill with AN for 15+ years to magically gain weight is probably a pipe dream. The medical system isn’t set up to provide the long-term, intensive support that adults with chronic AN need- and that’s just bloody sad.
As well, when I was dealing with the stresses of weight gain and recovery work, it was crucial that I had something to recover for. I needed to have some feeling that this was all going to be worth it. At first, it was really hard. I had a job, yes, but it wasn’t anything I was passionate about. Several of my jobs fed into the AN. Finding something I wanted more than the ED was a really big help. So perhaps helping these particular patients work on improving quality of life first before tackling behavior change is a smart move. It gives them a glimpse of what there is to recover for. It’s reflected in the increased readiness to change that the researchers saw in this study, I think.
The study significantly improved the quality of their lives even though BMI didn’t change. Honestly? That’s worth something, especially in this group of patients. Quality of life matters. I don’t think treatment should stop there- I think we owe it to these sufferers to keep working with them to help them keep chipping away at the ED and make significant behavioral change. I think we should try and bring in friends and family to help them as they try to do the hardest thing they will ever attempt. But even if nothing else changes, this treatment helped improve their quality of life. It’s something we didn’t have before, and it’s important.
*I do realize that not all families can and should be involved in ED treatment. But there are plenty of families who can and should be involved and frequently aren’t, either because they don’t know to be or they’re specifically told not to.