Good things don’t come for those who are waitlisted: The true damage of long wait lists on ED recovery

Asking for help for an eating disorder, whether it’s for yourself or a loved one, often requires you so screw your courage to the sticking place. For one, there’s stigma. For another, there’s the fear of stopping ED behaviors and of what treatment will bring. Not to mention the other worries associated with discussing some shameful behaviors with a healthcare provider who may or may not actually be sympathetic to what’s going on.

So you make your calls and try to get an appointment. It’s then that reality hits: you can get an appointment, true, but it might be more than a year from now.

On what planet is this acceptable? For any condition, not to mention the deadliest of all psychiatric disorders?

The message to sufferers is plain: you’re not sick enough. You don’t deserve treatment. You don’t matter enough to be helped. Stop being such a big baby. Get over it.

There’s the issue of the many health-related problems that can happen while someone is on the waitlist, but say you do manage to stay stable enough to be helped when you finally do get your appointment. What happens then?

Scientists have looked at this question and tried to figure out how a long wait list affects a person’s response to treatment and overall recovery. Their results aren’t pretty.

The study was published last year by Australian researchers in the journal Behaviour Research and Therapy, and evaluated factors that predicted patient dropout from outpatient CBT-E (enhanced CBT for EDs). Some of the factors they found were specifically related to the patient history, but one of the strongest predictors of dropout was the amount of time spent on a waiting list for treatment (Carter et al., 2012). Let’s dig in to the data a bit and see what the researchers found.

First, the definition of “dropout.”

‘Dropout’ is commonly defined as non-consensual termination of treatment by the patient, or staff-initiated discharge due to the patient’s inability to accept the goals of treatment (e.g., achieving a Body Mass Index [BMI] > 18.5 kg/m2 or cessation of purging).

The non-completion of ED treatment (I will blog about the various definitions and conceptualizations of “dropout” in the near future, so I’m not going to get into that in this blog post) is a serious issue: between 30% and 70% of ED patients don’t complete a full course of prescribed treatment. Rather than viewing this as non-compliance, I see it as a manifestation of both the illness and the extreme anxiety caused by stopping ED behaviors and normalizing nutrition. *gets off soapbox*

To study what factors were affecting early termination of outpatient treatment in Perth, Western Australia, researchers followed 189 patients who presented for outpatient treatment (CBT-E is what was on offer in that particular area) for an ED between 2005 and 2010. The patients ranged in age from 16 to 53 (average age= 26), and only 4 (2.1%) were male. Of these patients, 18% had AN, 40.2% had BN, and 41.8% had EDNOS. The participants completed a variety of measures including current and past weight and ED behaviors, duration of illness, measures of ED thoughts and behaviors, depression, and anxiety, as well as basic demographic information. The researchers also measured the amount of time on a waitlist, which they determined by “calculating the number of days between the date of referral for treatment and the first active treatment session.”

Treatment consisted of manualized CBT of roughly 20 sessions for BN/EDNOS and 40-50 sessions for AN patients.

Of the all the patients who began treatment 55% completed the full regimen of treatment, while 45% did not. Most of the patients who did drop out did so before the 12th session. There wasn’t a significant difference in rates of treatment non-completion due to diagnosis. See the snazzy table below I created to look at the data more easily.

Diagnosis  % Dropped Out
Anorexia 58.8%
Bulimia 32.9%
EDNOS 49.4%
All EDs 45%

So if specific diagnosis didn’t affect rates of treatment non-completion, what did?

  • Weight history. The lower a person’s adult weight (after age 16), the greater their likelihood of not completing treatment.
  • Anxiety. Higher levels of pre-treatment anxiety made a person more likely to drop out of treatment (although this variable wasn’t significant when considered along with other factors)
  • Avoidance. Those patients who had a stronger avoidance of negative emotions, and lower distress tolerance skills, were more likely to drop out
  • Length on waitlist. The mean waitlist time was 149.83 days, though some individuals waited over 400 days. The longer you were on the waitlist, the more likely you were to not complete treatment.

The importance of these findings is that waitlist times are much more modifiable (in theory) than the other factors. You can’t do anything about a patient’s weight history, and it’s difficult in the early stages of treatment to fully address factors like anxiety and avoidance–though addressing those things head-on at the beginning of treatment might make a person more likely to be able to complete treatment in the end. But these are individual factors relating to treatment.

A long waitlist, on the other hand, is considered a process-related factor, something that is related to the provision of treatment rather than the recipients of (or participants in) treatment. So long waitlists aren’t just harmful in the short term (medical and psychiatric complications that occur while the person is waiting for treatment), they’re also harmful in the long-term, since chronicity of an ED is a significant predictor of treatment outcome, and the longer a person is on a waitlist, the more likely they are to prematurely discontinue treatment. So it’s a double whammy.

Conclude the authors:

In the eating disorders, motivation to change is universally recognized as a critical factor in treatment engagement and outcome. At the point when individuals make the decision to ask for help for their eating disorder, motivation to engage in treatment is likely to be at its highest. However, the motivation that accompanies a patient’s initial presentation to a primary care giver for referral to specialist eating disorder treatment may diminish over time. Thus, a long wait-list period may result in a decrease in commitment to therapy. It is incumbent on health services to recognize that one consequence of long waiting lists is increased likelihood of dropout from treatment and the associated burden of an ongoing eating disorder on the individual and society.

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12 Responses to “Good things don’t come for those who are waitlisted: The true damage of long wait lists on ED recovery”

  1. Thank you!!!!!!!!!!!!!!!!!!!!!!
    Screening, early diagnosis, and immediate treatment for as long as necessary….

  2. Yes. Thank you so much for this.

    While my last treatment stint was years ago and I struggled to even reach out, I waited entirely too long and then paid $18,000 of my own money for 10 days of treatment until I was kicked out (no insurance, see $18,000 above) so someone else on the wait list could move on in. Of course I was kicked out against medical advice, but hey! There was a wait list of people with insurance, so see you later!

    It’s so hard to even take that step-one I know I need to take now, but won’t–and to be told that you have to wait months upon months simply feeds the “I’m not sick enough” line of thinking that already exists. Disgusting.

  3. Seems blatantly obvious to anyone who understands anxiety based disorders- “waiting” is the perfect environment to breed heightened anxiety, which in turn encourages engaging in ed behaviors to tolerate anxiety, which means, of course, that by the time the waiting is over, the ed has gotten even stronger and the person is less likely to be capable of being rid of it.

    On a more personal note, waiting for me would also mean, “My ed is here for me; you are not.” Hence, a stronger ed alliance and treatment would be that much more difficult.

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