Sunday, August 12, 2007

Part 2: Evidence Based Interventions

In my last post, I opened the topic of evidence-based approaches to treatment, and asked whether or not they are a good thing or not. I think the most obvious answer is that the efficacy and ethics of EBIs are entirely subject to the people who are establishing them and the processes they undergo prior to completion.
Taken in their simplest form, it seems like a no-brainer that EBI’s are the preferred method of treatments to offer for any number of conditions, including autism. But upon further consideration, the issue is far more complicated. What I’d like to do here is to list some of the serious concerns I have about EBIs.
(I would like to point out that there is probably not an original thought or concept on this list. While I am not plagiarizing – I am simply summarizing some of the problem areas that have occurred to me – I am aware that much thought has been given to this topic, many medical and ethics professionals have hashed out the nuances of this issue, and my “glancing blow” is not likely to generate any revolutionary concepts. At the same time, I don’t believe enough debate has taken place within the autism community on this subject, and I would like to see more opinions – especially those who outstrip my own in terms of practical experience and academic fluency.)

Who is Guiding the Process?
The first thing I would be concerned about in relation to EBIs is; In any given effort at establishing EBIs, who are the primary players in starting the process and seeing the process through? Simple Conflict-of-Interest issues are one consideration here, self-fulfilling prophecy is another.
I recall reading a post by one of my favorite bloggers – Prometheus – which stated that, in many research scenarios, one finds just exactly what one is looking for, regardless of whether it is true or not. It is very difficult to cull various forms of bias from research, and the design of the process that is expected to arrive at the correct EBI must be very carefully considered and reviewed for the correct conclusion to be reached.
Let me throw out just one example to illustrate the point. I recently reviewed a document which outlined the process that has been established for determining the best EB approach for treating autism in the U.S. One part of the document specified that “biomedical” approaches are being handled by another, similar group. As it turns out, by looking into the backgrounds of many of the individuals involved with this particular effort (the first group), this is largely a behaviorist-based movement. So we have a group of professionals with a heavy bias to one school of thought in autism treatment setting up a process to review scientific literature to determine the efficacy of various treatments. Let me ask you – do you think it likely that this particular group will agree upon a treatment, or group of treatments, that is not behaviorist in nature? And the “other” group that is being referred to – the one responsible for Biomedical EBIs – do you think it is even vaguely possible that they will end up recommending nothing? Is that even a possibility? I hope they come up with something that is appropriate, effective, and specific to autism, but I think it highly unlikely based on the current body of knowledge on the subject. Still, I fully expect they will come up with something to recommend – they have legions of healthcare providers (legitimate and otherwise) who have bills to pay, after all. Sorry if I sound a bit skeptical, but I really am concerned about this.

“I Don’t Know” Factor
Though there probably exists an official academic term for this concern I have, I will just summarize it is the “I Don’t Know” Factor. What I mean is that, in the absence of good evidence, isn’t it best to not be making recommendations? That instead it should be clearly stated that not enough evidence exists to establish Evidence-Based Interventions?
I understand that at no point do we know enough about anything to speak with absolute, unassailable authority about it. At the same time, a tangible lack of evidence (or an existing set of conflicting, inconclusive evidence) should seemingly prevent a definitive finding from being achieved.
A great example here is ABA. There are, to the best of my knowledge, hundreds of studies about the efficacy of ABA. The result of these studies is a lack of agreement in the scientific community about whether or not ABA should be defined as an EBI for autism. Forget ethical considerations for a moment and consider this: After decades of research on how ABA (in varying forms and levels of intensity) affects autistic individuals, there is still no consensus on whether or not it is an effective intervention in cases of autistic individuals. Why, then, was it the only service (aside from respite care, which we have not yet ever done) offered by the state of California for my son? Is it perhaps because at some point in the past it was recommended as the state’s official EBI? Interesting, since evidence clearly lacks. I am not sure it is appropriate for an EBI to be supported by such conflicting evidence.
Some autism advocates will say, “We need to settle on something so that parents do not miss opportunities to provide early interventions to their children.”
What if ‘something’ really means ‘the intervention that currently has the most evidence, even if that evidence suggests a very low efficacy rate’? Is it still, then, appropriate to tout ABA as the single most beneficial autism intervention? Would it not be better to say that “We cannot, based on current scientific evidence, support any one intervention, but here is a list of reviewed approaches and the associated literature.”
If one does not know the answer to a question, "I Don't Know" may be the only honest response.

Those two issues are enough for one post, but I do plan to continue my list.
Here’s a teaser for the next item on my list:
The Implications of Consequentialism


Chuck said...

Excellent post, good questions.

Estee Klar-Wolfond said...

May I link this post to our next TAAProject newsletter and to the site?

Steve D said...

Chuck -
Thanks. We agree on something!

Estee -
Yes, absolutely. Thanks for asking.

Steve D said...

That reminds me, Estee - I've been meaning to ask you if I could place a link to TAAP on my blog.

Club 166 said...

Under "Who is guiding the process?" one must also, of course, look at "Who is paying for the process?". While studies sponsored by certain groups do not necessarily make them invalid, they do demand that extra scrutiny be involved.

With regards the "I don't know factor", when you talk about something like ABA, you have to carefully define what you mean. And then you have to only reference studies that fit your definition, in deciding whether the intervention is EB or not. Too many people have done studies of ABA using different methods.

Another factor is political/bureaucratic considerations. No government group is going to pay for something unless it has a proven benefit. This leads "competing" therapies to try to push their way of treatment as THE ONE AND ONLY WAY, in order to secure funding for their treatment. Once your treatment is certified as THE ONE AND ONLY WAY, you are free to set up a whole cottage industry of education centers to train therapists, continuing education seminars for existing therapists, certifying boards, etc.