CONTENTS

This is a threaded discussion page for the International Stuttering Awareness Day Online Conference paper,
Documenting Treatment Outcomes in Stuttering: Measuring Impairment, Disability, and
Handicap, by J. Scott Yaruss (Pennsylvania, USA). 

Kudos and Miscellaneous Questions

From: Gunars K. Neiders, Ph.D.
Date: 10/1/98
Time: 9:18:12 PM
Remote Name: 199.238.253.15

Comments

Dr. Yaruss, I was impressed by your humanitarian and wholistic (both meant in the best sense) approach to
outcome documentation. We in Rational Emotive Behavior Therapy have been always interested in the
adjustment of the individual to his situation in life, as well as in changing, whereever possible, our life
situation. The Schematic version of Yaruss's (1998a) conceptual framework for viewing the speaker's
experience of the stuttering disorder, is as close to scientific genius as I have come accross in the social
sciences. Truly, a joy to behold, when one understands the implications behind it. The functional status
(disability level) and quality of life status (handicap level) are truly the measures that are important. 

Now come the questions: 

1) As a psychologist, I am particularly interested in the life satisfaction measure. This, of course, is both a
function of the functional status and quality of life as well as psychological maturity. Am I correct in the
understanding that this is part of the quality of life measure? Would this imply that stuttering therapy would
also include a philosophical reorientation, which is often in the domain of psychology? 

2) In the functional status paragraph you state, "Note that this tool is not focusing on the speaker's fluency,
but how likely the speakers are to attempt to do them, regardless of how fluent they are." Is the success of
these attempts the domain of the quality of life measure? 

3) Suppose you subjected persons like Jimmy Stewart, Patrick Moynihan, Mel Tillis, and the GE Chairman
of the Board Mr. Welch to your battery of perfected tests at some future date. Understanding that all these
persons are very successful in life even though they have audible disfluencies would you expect that their
"life process therapy ;-) (whatever that may have been)" would come out as an unqualified success, or
would you expect differences in their scores according to their internal interpretations? 

4) Am I right in presuming that you do not advocate throwing out the other measures of assessing various
aspects of the stuttering impairment? If you maintain the other measures as well as these new ones, when
push comes to shove, would you join me in rooting for a person who scores higher on the functional status
and quality of life instruments than somebody who no longer stutters audibly or visibly but has been
mangled by the therapeutic process or at least not helped by the therapeutic process to over come his innate
perfectionism and demands for fluent speech. 

Re: Kudos and Miscellaneous Questions

From: J. Scott Yaruss
Date: 10/5/98
Time: 9:12:59 AM
Remote Name: 128.147.91.24

Comments

Dear Gunars, 

Thanks much for your too-kind words about my article and model. I feel embarrassed for seeming to take
the credit for the work of my colleagues in this and other fields, but I appreciate your praise for the package I
put it in. 

To your questions: 

1) Satisfaction does play a key role in the quality of life measure. We assess factors such as satisfaction with
communication in a variety of tasks and situations, as well as the extent to which stuttering has affected
overall satisfaction with life. To the point of the philosophical orientation, I'm not entirely what you are
intending. True, some people who stutter experience rather life-changing re-orientations as their perceptions
change about stuttering and the role it plays or should play in their life. But, I'm not sure that this is my goal
in approaching working with an individual who stutters. Rather, my goal is to help the client identify his
roadblocks to satisfaction in life and address those. I think we need to be very careful about the boundaries
between psychology and speech-language pathology, and I am always cautious not to cross that line. 

2) Good question about whether the client's success (i.e., in terms of fluency) in approaching situations
relates to quality of life. I would have to say that I don’t see it this way. I think the functional status measure
assesses whether or not the person can perform basic tasks of living (e.g., using the phone, etc.). Their
fluency in these situations is simply that, their fluency. It's an impairment-level measure. Their quality of life
may be high if they are fluent or it may be low, or the other way around – really, I like to keep measures of
fluency squarely at the impairment level and save quality of life for ability to fulfill life roles. 

3) Would different "successful" stutterers yield different quality of life scores? Ideally, yes. If the test is
sensitive enough, it will identify differences between the individuals you mentioned. We do not all achieve
our successes to the same degree. For example, Thomas Jefferson was undoubtedly successful in his life;
however, because of his stuttering, he was often miserable and almost refused to write the Declaration of
Independence because he was afraid he might be asked to read it out loud. Quality of life attempts to
combine these less tangible aspects, and it is different for each individual depending upon their internal
perceptions. 

Fluency, like money, cannot guarantee happiness. 

4) Absolutely right – I see the measures at the various levels as being used in conjunction with one another.
A combination of impairment, reaction, disability, and handicap measures will provide a more complete
picture, in my opinion, than measures focus on any single level. However, by separating the measures out
in this way. We have the opportunity to select the nature of measurement we are interested in at any given
time. I am hoping that by specifying the levels we will have more organization and structure to the
measurement and can view the type of treatment we are focusing on in more specific ways. 

Thanks again for your kind comments. I'm enjoying our dialogue, both on-line as well as off-line. 

Scott 


Measuring efficacy

From: Ed Feuer
Date: 10/2/98
Time: 2:56:18 PM
Remote Name: 207.161.63.224

Comments

Scott, When I see talk of measuring outcome or efficacy, I look at things from the point of view of a
consumer. The history of stuttering therapy is full of claims of long-term efficacy that are either highly
exaggerated or outright fraud. Therefore, what I'd like to see is independent third-party, scientifically valid
efficacy data over time such as one- three- and five year terms. Such research would observe the subject's
speech in a variety of situations. The researchers would also speak to the people with whom the person who
stutters comes into contact with on a daily basis. We know that in answering how's-your-speech-now
questions posed by people from the delivery program, there is the potential contaminating factor of ex-clients
not wanting to admit failure and not wanting to admit "letting down" the people with whom they worked.
Another factor when the clients' former clinician or other representatives of the program ask the follow-up
question is the phenomenon of the belief there is the old-clinic room, sole-focus"permission" to use the
"techniques." That, too, spoils the data.


Re: Measuring efficacy

From: J. Scott Yaruss
Date: 10/5/98
Time: 9:20:07 AM
Remote Name: 128.147.91.24

Comments

Hi Ed Thanks for your note. I agree with you that there are dangers associated with assessing the outcomes
of fluency therapy and that there is a need for long-term fluency success data. 

I want to point out, though, that your comments dealt SOLELY with the fluency aspect of the disorder. I
would like to suggest that in addition to data on fluency, we also need data on the long term outcomes in the
disability and handicap domains of the disorder. 

I think our best bet in working toward these common goals is to lay down our arms, forgive the sins of the
past, and work together toward mutually satisfactory accomplishments in the documentation of clinical
outcomes in stuttering. 

Thanks for your input, JSY


Measuring efficacy

From: Ed Feuer
Date: 10/6/98
Time: 2:11:01 AM
Remote Name: 207.161.63.240

Comments

You said: ".... in addition to data on fluency, we also need data on the long term outcomes in the disability
and handicap domains of the disorder.... " 

Yes, definitely. And information on long-term outcomes for the handicap and disability aspects should also
be obtained by independent third parties, including communication with people with whom the former client
comes into contact with on a daily basis. Only with such rigorous investigation will we be able to accurately
gauge success-rate claims. — Ed Feuer


Re: Measuring efficacy

From: J. Scott Yaruss
Date: 10/6/98
Time: 1:22:36 PM
Remote Name: 128.147.91.24

Comments

Hi Ed... Thanks again for your input. I'm afraid the independent 3rd party idea might be a little hard to
accomplish, but it certainly is a worthy goal. I doubt if JD Powers and Associates would be too interested in
the paltry sum that we could offer for such a study. Still, I wouldn't completely give up on the impartiality
of scientists in evaluating treatment outcomes. Our fields has many good, real scientists who have been
trained to evaluate data in an unbiased manner. There is hope yet! 

In terms of seeking data from those in the client's environment, I agree wholeheartedly. By way of
example...Michael Susca, now of the University of Nebraska, last year presented a paper at the International
Fluency Association Congress that included data collected from significant others. Additional data from the
study will be presented at the ASHA convention this year in San Antonio. This is but one example off the
top of my head, so again, there is hope. 

Scott


Disability/Handicap Instruments

From: Anne Cordes
Date: 10/8/98
Time: 9:06:40 AM
Remote Name: 128.192.78.56

Comments

Hi, Scott -- Fun stuff. I've been wondering in general, and now having read your paper I am wondering
again, how much the "new" disability and handicap scales are based on, or have in common with, some of
the old tried-n-true scales like Woolf's old Perceptions of Stuttering scale (1967?) and Silverman's (1980)
"Problem Profile" and Brutten's CAT and the Johnson, Darley, Spriestersbach/Williams, Darley,
Spriestersbach avoidance/reaction/stuttering/frequency evaluations and whatever else I am forgetting at the
moment. There's even some of the scales that come in the commercial treatment kits -- the Coopers' program
has attititudes and avoidances forms for clients and for parents, for example. I know the older
scales/instruments don't have the words "disability" and "handicap" in the titles, but they get at a lot of the
same ideas using the vocabulary "attitudes" and "avoidances" and "things I would like to be able to do after
my stuttering treatment that I don't do now" and so on. Are you finding all the existing forms useful as you
develop your current versions? 


Re: Disability/Handicap Instruments

From: J. Scott Yaruss
Date: 10/8/98
Time: 4:32:36 PM
Remote Name: 128.147.91.24

Comments

Hi Anne! 

Thanks for your question about the relationship between the new instruments and existing tools that have
been around for years. 

The simple answer is this: the existing instruments you mentioned (there are lots of them...Charlie Healey
did a very nice review at the SID conference the year before last) are not focused on measuring
DISABILITY or HANDICAP. They are focused on measuring attitudes and reactions, which, in the model I
apply, are a different level. A different level of the client's experience, and a different level in terms of
treatment. 

The primary difference is that disability focuses on what you CAN do (or, in the case of stuttering, what you
are willing to do) in the sense of activities of daily living (e.g., doing things you need to do to have a job, or
engage in social interaction, etc.). This is separate from IMPAIRMENT measures (such as measures of
frequency, rate, duration, etc., like the first ones in your chapter in the Curlee & Siegel book), and they're
separate from REACTIONS measures which are the attitudinal and emotional inventories you mentioned. 

It's not just the vocabulary that's different -- it's the actual concept that's being measured. 

The only place that I DO have overlap with the existing instruments is in the reactions scale we're testing. I
drew heavily on all of the existing scales for this one, with one primary exception. I wanted to SEPARATE
out the affective, behavioral, and cognitive reactions into different domains, for both theoretical and
therapeutic reasons. The S-24 and others combine these domains heavily in the questions, and I find this
confusing for outcomes assessment. Watson does separate them nicely in her '88 instrument, but the
questions she asks are mostly situationally based. 

In the attitudinal/reaction instrument I'm testing, I'm trying also to move away from the situational issue,
primarily due to concerns that situational differences in attitudes simply reflect the speaker's fluency
performance in those situations (e.g., Ingham & Uliana). I don't think it's strictly true, but it is a valid
criticism that I'm trying to address with the new instrument. Also, 

SO...hope that answers your question. Disability (as indicated in this instance by functional status) and
handicap (as indicated in this instance by quality of life) are definitely different from attitudes and reactions,
and we currently have no instrument for documenting changes in treatment in those domains. That's why
I'm pursuing this project and why I'm working on creating yet another scale ;-) 

Thanks again for the comments... 

Scott


Re: Disability/Handicap Instruments (one more thing)

From: J. Scott Yaruss
Date: 10/8/98
Time: 4:37:49 PM
Remote Name: 128.147.91.24

Comments

...and one more thing. 

Forgot to mention that I STRONGLY believe that these instruments we're working on should be used in
conjunction with, not to the exclusion of, basic measures of the stuttering impairment such as the ones you
and your colleagues have worked on -- and worked to improve. 

We need to know how much the person stutters, no doubt. But, I think we also need to know how much the
person has experienced changes in other aspects of their life -- reactions, disability, and handicap -- if we are
going to get a more complete picture of the consequences of the disorder for the client. 

AND, we particularly need to be able to measure this stuff if our TREATMENT is designed to operate at the
level of improving attitudes or reducing disability or handicap. 

That's enuf for now ;-) 

S

Re: Disability/Handicap Instruments (one more thing)

From: Anne Cordes
Date: 10/8/98
Time: 6:02:06 PM
Remote Name: 128.192.78.56

Comments

Cool, thanks -- I interpret some of the statements in some of the older instruments as actually getting at
handicap ("I avoid asking for a job," "I avoid making new friends even when I would like to make new
friends," etc.), but they are definitely in the minority, and I see where you're coming from. And you didn't
even need to add your "one more thing" on my account -- the point is not that we should all work on the
same things from the same points of view (how dull) but that we should each make our own piece of the
puzzle and try eventually to put them all together. And besides, I love it that everyone else seems to be
flocking toward social/cognitive/emotional measures right now -- cuts out the competition down here at the
impairment level. 

Somebody is going to completely misinterpret that last comment, but I'm going to leave it anyway. :) 

Re: Disability/Handicap Instruments (one more thing)

From: J. Scott Yaruss
Date: 10/9/98
Time: 10:04:44 AM
Remote Name: 128.147.91.24

Comments

Hi Anne Thx for your response. I agree with you that there are some items in some of the older instruments
that do tackle some of these issues. Without a doubt. But I've found when I try to use them that the issues
get muddled. I like the idea of separating the levels (thus the model), so I like to see the data separated too. 

Tried to think of a witty comeback to your competition line, but I'm afraid my wits have completely failed
me. Warts! 

;) S


SID 4

From: Chuck Goldman
Date: 10/18/98
Time: 11:19:48 AM
Remote Name: 152.163.206.194

Comments

The pioneering work you and SID4 of ASHA has undertaken is much appreciated by clinicians and our
clients. When criteria can be discussed as being met in concrete fashion, some of the mystery of treatment
that might inhibit some from asking for help is eliminated. 

Re: SID 4

From: J. Scott Yaruss
Date: 10/20/98
Time: 8:44:39 AM
Remote Name: 128.147.91.24

Comments

Hi Chuck Thanks much for your comments. I believe that removing the mystery from diagnosing and
treating stuttering is one of the most important things we can do to help reduce the uncertainly
speech-language pathologists have about stuttering and, ultimately, to improve services for people who
stutter. I have pursued this goal through many of my presentations and publications, and I view that as one
of the primary by-products of the treatment outcomes work my colleagues and I are currently pursuing. 

One example is the treatment planning roundtable we're having at the Stuttering Center of Western
Pennsylvania later this week in honor of the ISAD. It's a free workshop for speech-language pathologists in
the Pittsburgh area, designed to give clinicians an opportunity to ask questions and get new ideas about how
best help their clients who stutter. Along the way, we hope to make stuttering less mysterious for the
clinicians and to help them learn concrete ways to help people who stutter. 

I'd welcome any other suggestions you'd have for making stuttering more accessible for clinicians. 

Thanks again for your note! Scott


Treatment planning roundtable

From: Judy Kuster
Date: 10/20/98
Time: 6:10:53 PM
Remote Name: 134.29.30.79

Comments

I read in your previous response about your excellent idea to sponsor a treatment planning roundtable. I
hope you don't mind that I posted it with the other ISAD announcements at
http://cahn.mnsu.edu/isadannouncements/ 

Judy


Re: Treatment planning roundtable

From: J. Scott Yaruss
Date: 10/21/98
Time: 11:24:59 AM
Remote Name: 128.147.91.24

Comments

Thanks Judy for posting the info about the
workshop. 

There's more info about the Stuttering Center of Western Pennsylvania's ISAD treatment planning
roundtable at: http://www.pitt.edu/~commsci/stuttering_center/scwp_events.htm 

Thanks! Scott