"Evidence-Based Treatment" ... Garbage In, Garbage Out

“People almost invariably arrive at their beliefs not on the basis of proof but on the basis of what they find attractive.” 

― Blaise Pascal, De l'art de persuader

“Circumstantial evidence is a very tricky thing. It may seem to point very straight to one thing, but if you shift your own point of view a little, you may find it pointing in an equally uncompromising manner to something entirely different” 

― Arthur Conan Doyle, The Adventures of Sherlock Holmes

There are many different types of evidence with which an attorney must be familiar when preparing for battle in a courtroom. These types of evidence include: Anecdotal evidence; Character evidence; Direct evidence; Indirect evidence; Demonstrative evidence; Circumstantial evidence; Digital evidence; Exculpatory evidence; Forensic evidence; Hearsay evidence; Statistical evidence; Prima facie evidence; Physical evidence, and; Testimonial evidence. Some evidence is admissible for a jury’s consideration. Some evidence is regarded as being more persuasive than others. Some evidence is not admissible and some evidence stands for a proposition directly opposite of a client’s intended purpose. Without context, without a court’s guidance and a jury’s understanding, there can be no reliance placed on “evidence.” That type of “evidence” remains empty, a set of vacuous suppositions or opinions with no particular importance or purpose.

Many treatment centers today market their programs as a type of “gold standard.” On their slick, welcoming Internet websites, they represent that their protocol utilizes “evidence-based” treatment. Desperate parents, fearing for their loved one’s life, are seduced by the hope that is offered by these treatment centers. And they entrust the most beloved thing in their life to them believing that the treatment their loved ones receive strictly complies with this “evidence-based” research.

In the eating disorder industry, the term “Evidence-Based Treatment” (“EBT”) has become a punch line, and without context is hollow and inane. It can mean whatever the person using that phrase wants it to mean. In fact, on August 15, 2018 I received an email from a residential treatment center. The email was simply entitled, “Evidence-based Mental Health Treatment.” Naturally the email did not define the specific alleged EBT to which it was referring nor the manner nor extent in which it was utilized.

So, let’s  address what “evidence-based” treatment is ... and what it is not.

A standard definition

The National Alliance on Mental Illness defines evidence-based practices as: “… treatments that have been researched academically or scientifically, been proven effective, and replicated by more than one investigation or study. This model integrates medically researched evidence with individual patient values and the clinical experience of the provider. Evidence-based treatment practices are meant to make treatment more effective for more people by using scientifically proven methods and research.”

The Foundations Recovery Network states, “Evidence-based practices generally work because they have been proven. Studies have already been conducted most likely in large-scale clinical trials that involve thousands of patients. Scientific evidence is plentiful and risk factors have already been assessed. The results of extensive research are usually used to produce a plan that is replicable and standardized. Many EBPs have thorough written instructions and the necessary tools needed to implement them. EBP treatments may also be less expensive than traditional therapy as well.”

This definition of EBT is direct, simple and understandable. And yet its application from theory to practice is erratic, subjective, inconsistent and not subject to oversight by any governing or legislative body.

What we do know

With regard to eating disorders, no specific, therapeutic modality has emerged as a definitive, “evidence-based treatment” for treating adult-onset anorexia. However, EBT, as defined above, is generally regarded as most effective for bulimia nervosa and adolescent anorexia nervosa. This EBT protocol includes cognitive-behavioral therapy (CBT) for bulimia in adults, and family-based treatment for adolescents with fewer than four years battling anorexia. Interpersonal therapy (IPT) has also shown some effectiveness with bulimia nervosa.

The overwhelming body of research clearly indicates one type of setting as being the most effective for treating adult-onset anorexia. With regard to adults, studies conducted by both United States based and international clinical bodies indicate that outpatient care – not inpatient or residential – is the most effective first-line treatment for anorexia nervosa. 

The Royal Australian and New Zealand College of Psychiatrists’ (RANZCP) guidelines, published in 2014, revised their latest set of protocols to state that adults with anorexia, including Severe and Enduring Anorexia Nervosa (“SE-AN”) should be treated in the least restrictive environment possible. The RANZCP handbook states that many individuals battling severe, chronic anorexia in fact can achieve successful outcomes through outpatient care. These guidelines represent that they are based on a review of all of the most current research to date. 

The growing consensus among researchers globally is that residential or inpatient treatment should be resorted to only when individuals are experiencing life-threatening medical complications, are at extremely low weights, or are unable to initiate change in any level of community-based, outpatient care. Eating disorder experts say that even then, residential treatment should occur for as little time as possible, with patients stepped-down to lower levels of care as soon as they are stable.

Research supporting these updated guidelines include studies on SE-AN individuals that have emerged from pilot programs in Australia, New Zealand, British Columbia, Sweden and Canada. This research indicates outpatient treatment such as a form of CBT modified for severe anorexia (CBT-SE), as well as Specialist Supportive Clinical Management (SSCM), is providing better overall results.

For adolescents, American Psychiatric Association guidelines advise clinicians to determine level of care based on parameters such as medical condition, patient motivation, and weight loss rate. However their 2012 “Guideline Watch” did note that leading British researchers recommend against long-term, inpatient care as first-line treatment for adolescents, based on a large, multi-site study which showed adolescents receiving inpatient treatment fared worse than those who received outpatient care.

These APA guidelines further state, “On the whole, these investigators concluded that under the British National Health Service there is little support for long-term inpatient care, either for clinical or for health economic reasons. Inpatient treatment [for adolescents] predicted poor outcomes.”

“For people with SE-AN, you need to keep patients at home…. We need an entirely different treatment paradigm,” said Dr. Stephen Touyz, a professor of clinical psychology at the University of Sydney and one of the leading researchers in this field. Residential or inpatient treatment “doesn’t cure anorexia for older woman with. It just gets people to put on weight… Most studies show [older] people won’t stay in current treatment programs – because that treatment isn’t a style they can tolerate… But if you offer a form that is suited to them, they can put on weight, and can go on to have a good life.”

With this research data being available, let’s examine the manner in which it is being applied by counselors and treatment centers.

Issues with applying EBT to practice

Dr. Russell Marx, Chief Science Officer for the National Eating Disorders Association (NEDA) is on record saying, “Anybody can say, ‘I’m an eating disorder specialist.’ There’s no quality control.”  “The programs are not standardized… There’s all these places who say ‘We know how to treat eating disorders,’ but there’s no evidence to support it…. If you’re a family member it’s very hard to assess the quality of programs.”

In an article online, respected doctor and professor Cynthia Bulik is quoted as saying in an email, “This is a huge issue. Businesses can basically say anything they want to about themselves: ‘We are the best, the oldest, the largest, we have the best outcomes, etc.’ – and they very rarely have any data to support their claims.” “The Web sites and brochures are attractive, calming, reassuring, and promising, and [offer treatment which is] much less threatening than thinking about admitting to a hospital-based program with a much more clinical Web site – but [which is a program that] provides evidence-based care.”

Other obvious issues include negligible or non-existent oversight by individual states of for-profit eating disorder programs, alongside wide disparity in licensing standards for treatment centers throughout the nation. Treatment centers are also not required to adopt treatment protocols specific to eating disorders to operate a program in any state.

One 2012 study found that clinicians at traditional, for-profit eating disorder programs are more likely to utilize and endorse practices which are not empirically supported than university-based researchers/research-clinicians.

“I [am] quite struck by the parallel concerns that exist between the for-profit, residential addiction rehab industry” and eating disorder treatment, Samuel Ball, a Yale professor of psychiatry, said. “It is so disheartening and potentially tragic to know that people with chronic and deadly disorders are subjected to costly treatments with such limited evidence of effectiveness.”

The National Center on Addiction and Substance Abuse at Columbia University issued a report which found, among other things, “ … that individuals who enter the fragmented, poorly-overseen, residential substance abuse treatment industry rarely receive anything that approximates evidence-based care,” and that the lack of national standards results in “exemptions from routine governmental oversight” which are considered unacceptable for all other health conditions.

The damning 2012 study on RTCs

A comprehensive study of eating disorder residential treatment centers was published in 2012. This study involved and included twenty-two (22) residential treatment programs.

Although almost all centers offered CBT, the average amount of time spent on CBT a week was … a meager 29 minutes. Compare that to art-therapy: on average, 262 minutes, or the 12-step program: 208 minutes. Spirituality, recreational therapy, meditation, yoga, nutrition, dance, equine, music, journaling and “food/feelings” therapy averaged out to more minutes a week per patient than CBT, DBT, family or relapse prevention.

Only sixty-one percent of all programs reported using some type of data to evaluate the effectiveness of their treatment program. Of these 61%, 63.6% of programs used self-report surveys to gauge treatment effectiveness, 36.4% used outcome studies, 18.2% used laboratory tests, and 18.2% used program-initiated telephone calls. Some programs used more than one of the previous listed methods.

Greater than one third (36.4%) of the programs evaluating treatment effectiveness relied only on client-initiated post-treatment telephone calls for effectiveness measures. Thirty-nine percent (39%) of all programs did not provide information on the measures used to determine treatment effectiveness.

The Residential Eating Disorder Consortium (“Consortium”) is currently working on “a nearly completed multi-center research study assessing course of treatment from residential admission to discharge.” It is yet to be determined if that study will be based on scientific research and study or be replete with instances of Confirmation Bias and faulty logic. Further, a patient’s condition upon discharge paints an incredibly incomplete picture. It does not address recidivism, short term relapse or on-going mental or physical issues once the patients leaves their program. This is added to the fact that when one of the Consortium’s leading members advertises on its direct-to-consumer website, an alleged satisfaction rate of 99% without fear of adverse repercussion, and with the Consortium’s own history of inaccuracies on its own website, one is fully justified in looking with a healthy dose of skepticism upon any research study underwritten by the Consortium.

The fact is the term “evidence-based treatment” has lost any integrity or medical significance that that phrase may have once had and now has little or no materiality between that which is promised … and that which is delivered.

There is Hope Found in the Center of Excellence Approach

So, what does the future hold?

On September 6, 2018, Angela S. Guarda, MD, Stephen Wonderlich, PhD, Walter Kaye, MD and Evelyn Attia, MD published an article entitled “A path to defining excellence in intensive treatment for eating disorders.”

These four distinguished doctors propose establishing a “Center of Excellence” (“COE”) approach.  The concept of COE has been applied by corporations, government entities, and health care systems to establish quality metrics and promote consumer trust in the commodity the COE develops. The article further details that in health care, a COE may be defined as “a program within a healthcare institution which is assembled to supply an exceptionally high concentration of expertise and related resources centered on a particular area of medicine, delivering associated care in a comprehensive, interdisciplinary fashion to afford the best patient outcomes possible.” The doctors report that healthcare COEs have been established by professional medical groups, government entities, mental health agencies, and insurance companies. Professional medical groups have established COEs to raise practice standards and to require outcome reporting.

Purportedly, the concept of the COE in the eating disorder industry was discussed with a “small group of eating disorder professionals.” Not surprisingly, “the consensus was that the COE concept was important, but that the necessary elements, coordination, and oversight required further study.”

The article then states: “If the eating disorder field wishes to pursue standards for quality care, including the creation of clinically oriented COEs founded on a framework of best outcomes, it first needs to establish the clinically meaningful core dimensions on which to build a COE system. This requires operationalizing clinical excellence, including treatments to be delivered, training required for staff, methods to assure that clinicians deliver the treatments for which they receive training and perhaps most importantly, uniform metrics for assessing outcomes. A successful COE system should include procedures for systematic data collection, a means of auditing the outcome data, and should support collaborative research to improve treatment outcomes as current treatments lack efficacy for a significant proportion of patients with eating disorders.”

Apparently, the doctors are stating that in order for a COE to work, uniform core dimensions first need to be established, then we must standardize treatment, training and application followed by a uniform metric for assessing outcomes. 

But wait ... Uniformity? Standardized, consistent treatment and training? An objective manner to determine outcomes? Information that families could rely upon in an open, transparent manner? Who could possibly oppose this system … besides of course, entities which solely have a financial interest in the industry whose existence depends upon an increase in patient population and extended stays in the facilities that they own.

The doctors even go one step further and propose a methodology to develop this system, the Delphi method. The Delphi method is a process of obtaining expert consensus to answer research questions when a specific body of knowledge is lacking and has been previously used successfully in health care research to assemble best practice information.

Finally, the article proposes that oversight of this process could be provided by a federal agency, an advocacy organization, or by an alliance among academia, private programs, insurance companies and governmental agencies. Leadership input from state and federal agencies and health insurers could assist in sharing quality measurement information across organizations.

Conclusion and Proposal

The Center of Excellence approach could provide uniformity, standardized outcome criteria and most importantly, could restore some of the trust which has been eroded in the eating disorder industry.

As stated previously, the Consortium is currently working on “a nearly completed multi-center research study assessing course of treatment from residential admission to discharge.”  We also know the Consortium is meeting in Chicago on October 15th and 16^th. Has there ever a more opportune time for the Consortium members to study the doctors’ article in depth and reach out to learn more about COE and find ways to collaborate with the doctors who wrote the article and the academic community in general.

The Consortium has the ability to shape the future of the eating disorder industry through increased communication and cooperation with the research scientists and doctors and demonstrate that they embrace the reality that their first, foremost, and primary consideration is treating the people who have been afflicted with this insidious disease.

Standardized, consistent treatment of this disease, uniform training of employees and an objective manner to determine outcomes all of which would be established through collaboration and overseen by an objective third party. 

Or, the continued cash grab at the expense of the families and their loved ones who suffer.

Let us see which path the Consortium takes.