For years now we have keenly felt a need to share Kartini Clinic treatment results with colleagues and with our families in order to answer some basic questions about two distinct illnesses: childhood onset anorexia nervosa and food phobia of childhood.
What treatment works? And how long does it take to work? What are the components of success?
Dr Rebecka Peebles and I were recently discussing clinical results of Maudsley-based treatment (i.e. home-based re-feeeding); results which suggested that around 80% of patients in a particular Maudsley program experienced satisfactory weight restoration. As weight restoration is now acknowledged to be the cornerstone of successful remission/recovery, I told her that I was startled that these results (80%) were considered so good, since I was pretty sure we were closer to 100% at Kartini Clinic. “If that’ s true, Julie” , she said, ” you’d better not keep that to yourself; you’d darn well better publish your numbers too.” In other words: prove it!
Of course, authors of the few studies on Maudsley which I have seen are usually academicians at institutions that support their research efforts, while we — at the Kartini Clinic — are clinicians whose research efforts have to be carved out of our clinic days and “spare” time. That makes it slow going. We have no institutional statisticians, research assistants, nor access to SPSS, grant writers, funding, graduate students, etc., etc. Yet Dr. Peebles is right: if we think we are on to something that can make a substantial difference in the lives of children, we’ d better try to get that information out and into the hands of those who need it most.
The question is how.
During a recent research meeting, this topic was the source of some disagreement among those present (Dr. Janiece DeSocio; Morgan O’ Toole, our CEO; Sheila Scrobogna, our Food Phobia program coordinator; and me). Janiece is a PhD psychiatric nurse practitioner and associate professor at Seattle University, as well as a psychiatric provider at Kartini Clinic. She and I are the same age, and we both agree that to “publish” means to write an article for a peer reviewed research journal. Being clinicians we are naturally focused on sharing our results with the wider world of our clinical colleagues. But Morgan had a different point of view: “Hang the peer reviewed journals” he said (somewhat more colorfully than I can print here), “it will just suck your time dry trying to design, carry out and analyze a study that the journals will find acceptable. Meanwhile parents need information they can use now.”
Of course we protested this unorthodox view, not wanting to run the risk of being dismissed by our colleagues as publishing self-serving data; we insisted that scientific numbers in an acceptable format were worth the effort (and delay). “But it’s about the parents,” Morgan persisted. “Get the data they need out there immediately, so that they can make informed decisions for their kids with anorexia nervosa or food phobia. Parents need help; they want to know how successful we are in restoring children to a healthy weight and how long it’s going to take. Bottom line, they want to know one thing: will this program work?”
So now I am turning to our readership for input: what do you think we (collectively) need? What do you, as parents, care most about: getting information as quickly as possible, or do you feel results should first be vetted through a scientific peer review process?
Consider our food phobia example: to date we have been 100% successful treating food phobia patients, and we now have a series of 25 kids that Sheila Scrobogna has been writing up in the form of a “clinical descriptive” study (the kind most scorned by journals because of their anecdotal nature). Such a study would help us to explain to other practitioners and parents what we mean by the term “food phobia,” as well as describe what treatment has worked in our experience. Should we wait to publish it in a peer reviewed journal, even if this means an indefinite delay in getting this information into the hands of parents? And if we were to take it directly to parents, what format is likely to have the most impact on parents? How do most parents seek help for eating disorder treatment today? And while we are on the subject, where do pediatricians go to find help with their difficult cases? How did yours?
Another example: we are pretty confident that we achieve something close to 100% full weight restoration in children who complete our Kartini Day Treatment program, and we have a series of about 250 cases we think will bear this out. But it will take considerable time to design an acceptable retrospective study (much less a prospective one) and present our findings to a peer-reviewed journal. Our previous attempt to go his route – with our REDS interview analysis (Rating of Eating Disorder Severity) study – took many months to prepare only to be rejected by the International Journal of Eating Disorders (yes, the very journal that published the article on how parents of eating disordered kids were fatally flawed). And although our REDS article was eventually accepted for publication in an equally well-known European journal, we are still waiting for the printed page. And waiting. Meanwhile parents have no access to this data.
So back to the main question: what kind of data about eating disorder treatment do we all really need to know? What do you, as parents, want to know? And just as important, how would you come to trust the information you received: through testimonials and descriptive studies published on this or similar web sites or through peer-reviewed clinical studies?
