No escaping the eating: improving quality of life in anorexia
Last year, I wrote about a new study that looked at how to get people with long-term anorexia (aka, severe and enduring anorexia nervosa, SE-AN) to stay in treatment. It’s been a thorny problem in the field of eating disorders, because treatment drop-out is a big problem, both in research and in clinical practice. Whether individuals with anorexia are afraid of treatment, don’t believe they need it, or some combination thereof, it’s hard to get someone to show up at a therapist’s office, week after week, not to mention make changes like eating more and gaining weight.
I was okay with the first part (see, Mom? I’m doing something about my eating disorder!) but I wanted nothing to do with the second half. At all.
Despite the therapy, and the expense, my eating disorder remained entrenched and I remained fairly ambivalent. My quality of life sucked. Yes, I was employed, and that was definitely something, but I struggled at work, I didn’t have friends, and my health was marginal at best. Still, I was determined that I could therapy my way out of my problems. If my life didn’t suck so badly, then maybe I would be motivated to eat.
My therapist at the time supported this line of thinking. She wanted me to tackle the issue of dating first. We talked about Internet sites, about where to meet people, about what I was looking for in a potential partner. And that’s as far as it went. I signed up for a free online dating account, but I froze up when it came time to actually, you know, meet in person. I was a Land WhaleTM. For one thing, I couldn’t handle the thought of eating in a restaurant. For another, going on a date would mean I would have to interrupt my exercise and assorted other rituals, which wasn’t going to happen.
I tried other things along these lines, with similar results. I was ultimately told that I probably just didn’t want to get better and there was nothing more to do.
Improving quality of life is a great goal, but how we go about doing that is the subject of great debate, especially in someone with a long-term eating disorder. While people have been slowly accepting the idea that reducing ED symptoms is generally the most effective first line of treatment, it’s been less clear about SE-AN. For one, this is a group that generally doesn’t promote much optimism in the treatment community. As well, the idea that behaviors can improve is generally seen as wishful thinking.
Putting the cart before the horse?
In the trial on SE-AN that was published last year, the authors specifically said that the goal wasn’t to focus on weight gain, but rather quality of life. And indeed, they did show both an improvement in quality of life and some small improvements in ED thoughts and behaviors. The question they couldn’t answer, however, was which led to which. Did improvements in quality of life lead to improvements in ED thoughts and behaviors? Or was it the other way around?
A new study in the International Journal of Eating Disorders answers that question. Although neither of the treatments used for SE-AN focused on weight or behavioral change and instead focused on improving quality of life, they found that improvements in eating and weight were the only things that actually predicted improved quality of life.
Briefly, about the study participants: they were between the ages of 20 and 62 and had suffered from anorexia for at least seven years. Average duration of illness was 16 years. Most were single and did not have children, and were clinically underweight. The participants were also assessed at baseline, at the end of treatment, and 12 months after the end of treatment on eating disorder thoughts and behaviors, the physical and emotional effects their illness had on their lives, their level of depression, and their overall and ED-related quality of life.
They found that BMI at baseline was significantly associated with ED-related quality of life, such that individuals with a higher BMI had, on average, a higher quality of life. Although changes in ED symptoms and weight weren’t specifically targeted in this treatment trial, changes in both factors did occur over the course of treatment. When the researchers measured which factors were associated with improved quality of life, they found that precisely two things were: weight gain and improved ED thoughts and behaviors.
The authors conclude
This finding suggests that improvements in [quality of life] are associated with, and may be dependent on, behavioral change and weight gain…The main outcome paper from this RCT, as well as other clinical papers[9, 15] have suggested that, in SE-AN, more emphasis should be placed on QoL while retaining improved BMI and reduced ED symptoms as important outcomes. Results from the current study suggest that improvements in QoL may be driven by symptom change and weight gain. Certainly this warrants further experimental investigation as, if true, QoL improvement may be unlikely to occur independently of weight gain and symptom improvement.
So what does this mean for ED treatment? Getting someone with an eating disorder, especially someone who has been sick for a long period of time, to buy in to the idea of behavioral change is a tough sell*. Getting someone to want to improve their quality of life is generally a little bit easier. Indeed, the idea that maybe one day my life wouldn’t totally suck was one of the things I held onto during refeeding when I was otherwise losing my mind. For someone with a long-term eating disorder, the authors say, it might help to start small rather than basically freaking someone out and having them run the other way.
Keeping someone engaged in treatment is a win. So is improved quality of life, with or without behavioral and physical improvements. By all means, let’s celebrate improved quality of life however, whenever, and wherever it occurs. But we also need to think about how to be most effective at making that happen. I’m sure there are exceptions to this, but the research is consistently pointing to the idea that the best way to make this happen for most people is to focus on decreasing ED symptoms.
*wherein ‘tough sell’ may also equal ‘understatement of the year.’