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From: Steve Hood
Date: 10/11/03
Time: 9:47:15 PM
Remote Name: 205.188.208.136
Hi, Bob--
Thanks for your interest, and thanks for saying that you agree that these are desirable outcomes. The fact that there are no published data on efficacy would indicate that at least for now, these are assertions and not "facts."
I do not have a good answer to the excellent question you raised, but I do have some comments.
First, let me say that I appreciate the fact that there are people who are working hard to come up with ways to measure the effectiveness of treatment. HOWEVER-- I do not think we have a universally accepted definition or description of what it means to be effective. Certainly for me, the definitions currently being used to not go far enough.
The most recent issue of the Journal of Fluency Disorders had about 5 articles dealing with efficacy, but I am not sure I share the same operational definitions as the authors of these papers.
Most of the efficacy studies with which I am aware have looked primarily at the "surface features," and not the "deep features." Most have looked at stuttering frequency, in terms of such things as "percent stuttered syllables" or stutters per minute. I believe that frequency, per se, is a pretty poor indicator of success.
Behaviorally there is a lot more to severity than frequency. Severity in behavioral terms is more inclusive, and includes such things as effort/struggle, for example. Efficacy of treatment should also include non-behavioral components in terms of feelings and attitudes, and these are harder to quantify. Is talking fun? Does the person enjoy talking? Does the person talk when and where and with whom he wants to talk?
How, for example, would we do an efficacy study with a group of PWS who would fit into the sub-category of "interiorized" or "covert" stutterers? How would we deal with people who are fluent on the surface, but are so because they are "successful" in avoiding stuttering by such things as word substitutions, paraphrasing, refusing to enter feared situations, etc.?
I do not have a good answer to the valid question you asked. I wish I did. However, I can say that after 30+ years of working with people who stutter, these desirable outcomes are ones that make sense to me, based on what I have learned from interacting with many hundreds of folks who have been seeking relief from their stuttering problem.
When we look at the data from efficacy studies we have data what is hard to interpret because it is incomplete and inconsistent.
The sources upon which I based my paper are the PWS's with whom I have worked, those who have posted to sources I read such as listservs such as Stutt-L, and PWS's I have met through support group interactions via the National Stuttering Association.
They have told me their stories, and I have tried to listen.
I think my "desirable outcomes" have a lot of "face validity" -- albeit not yet empirically validated.
I hope, Bob, others will chime in on these theme.
Steve Hood