When discussing the needs of families new to our treatment program, my son Morgan (and Kartini Clinic’s CEO) tells me everyone really wants to know just three things about any treatment:
- does it work?
- how long will it take?
- and what will it cost?
In today’s blog I hope to be able to begin to answer the first two questions about treatment at Kartini Clinic. Let’s start with “does it work?” How many kids who come to us are able to achieve remission?
Physiologic remission is the first step and the foundation (the conditio sine qua non) of all remission. Children - boys and girls - with anorexia nervosa must first be weight restored before they can hope to achieve psychological recovery. Just about everyone has probably heard me say before that without weight restoration you get nothing.
What We Measure
So for this reason we looked specifically at weight restoration, and also because these numbers are easy to collect and fairly straightforward to interpret. Measurements of psychological remission - although equally important - are more complex and not covered here.
In 2012 we decided to take a concerted look at these data and share them openly, no matter what we found. Initially, we prepared to report the percentages of patients who achieved weight restoration according to our definition of a goal weight, since we thought (and still think) this is the most sophisticated and clinically meaningful way to calculate goal weights in pediatric patients. But our colleague Rebecka Peebles, (formerly of Stanford University Division of Adolescent Medicine, now at Children’s Hospital of Philadelphia), correctly pointed out that by doing so we would have just become one more point of idiosyncratic data, adding little to the national and international conversation about what works (since it would not be comparable - apples to apples - with data from other programs). She suggested that we compare our data to those reported by Lock and Le Grange for Maudsley FBT (2010), considered in many circles to be the gold standard.
To compare our patients’ results to those obtained by Lock and Le Grange we have to use the same formula and weight criteria they used to identify a young person’s “goal weight”. Lock, Le Grange and others (Kreipe et al) used achievement of the 50th percentile BMI for a young person’s age and gender to identify his/her weight restoration goal. As mentioned, for clinical purposes, we favor our calculation of each child’s expected weight for health, based on his or her premorbid growth curves, Tanner stage (SMR), and individual genetic predispositions. But because we also want our treatment outcomes to be meaningful to the national and international community of researchers, scientists, and clinicians, we decided to follow Dr. Peebles wise advice and analyze our weight restoration data both ways, using our own formula for identifying goal weights for each patient, as well as Lock and Le Grange’s BMI-based calculation cited above. We thank Dr. Peebles for her insight.
So, just to reiterate, the following data for Kartini Clinic have been reported in two ways:
1) using the BMI-based calculation, and
2) using our individualized clinical formula.
Implicit in the following data for “time to weight restoration” is the answer to the question “how long will it take?” Not answered is the important question “What do these kids look like five and ten years later?” We hope to have this information in…five or ten years!
So below please find the summary of weight restoration data at Kartini Clinic. Data were retrieved from a sample of 98 consecutively admitted patients with Anorexia Nervosa** who were treated at Kartini Clinic between January 2008 and March 2011. Inclusion criteria were a diagnosis of anorexia nervosa and remaining in treatment for at least one month (30 days).
Of this sample, 61 (62%) were diagnosed with anorexia nervosa, restricting subtype and 37 (38%) were diagnosed with anorexia nervosa, binge-purge or purging subtype. The sample includes 87 females and 11 males ranging in age from 7.65 years to 22.5 years (mean = 15.6 years):
Achieving 95% of BMI-based goal weights: 92% of Kartini patients with any AN diagnosis and 96% of Kartini patients with AN-R diagnosis met Lock & LaGrange goal weight (95% of 50th BMI Percentile weight restoration criteria) by 135 days of treatment.
Achieving 95% Kartini goal weights: 97% of Kartini patients with any AN diagnosis and 100% of Kartini patients with AN-R diagnosis met 95% Kartini goal weight by 140 days of treatment.
Note: all of these results are based on removing patients who already met the weight criteria at Intake.
The actual work of compilation and analysis of these outcomes was done by Janiece DeSocio PhD, P.M.H.N.P. and by Sheila Scrobogna M.A. Further statistical analysis is underway in collaboration with Dr. Ross Crosby, to examine factors that influenced the time to weight restoration for patients in this sample.
What Does This Mean for Parents?
Now, what does this all mean specifically for parents contemplating care at Kartini Clinic? Kartini Clinic has three levels of care: inpatient (hospital), day treatment/intensive outpatient, and outpatient.
It is possible to enter care at any of these levels, although best results are usually achieved with the induction of refeeding in the hospital (briefly) and step down to day treatment, which is where the psychological issues (as well as weight restoration) are achieved. Most children referred to us are not able to thrive at an outpatient level of care initially, although it is highly individualized.
Admission to the hospital is based solely on medical instability, as defined by the American Academy of Pediatrics and an average length of stay is anywhere from 4 days to two weeks, obviously depending on how ill the child is. Average length of stay in day treatment is about 8 weeks, and outpatient is open-ended and entirely dependent on progress. It follows from the numbers above that, although some children are weight restored by the time they leave the DTU, 95% of them will be so after about two months outpatient follow-up (assuming one week in hospital and eight in DTU).
135-140 days to weight restoration..... seems like a lot? Well it is, but for those parents who may have spent many months, even years, anxiously watching their child’s weight go down despite their best efforts and those of their pediatrician and or therapist(s), or whose weight refuses to go back up to a level at which they formerly grew and thrived, it is an effort well worth making.
When considering eating disorder treatment options be sure to ask how the program has demonstrated its ability to restore weight in a measurable and verifiable way. And then accept nothing less than success.
** DSM-IV criteria were not used for pediatric patients with purely restricting anorexia, but rather those proposed by us and others in Developing an Evidence-Based Classification of Eating Disorders: Scientific Findings for DSM-5 2011 published by the American Psychiatric Association pages167- 176 and p 217).