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 donÕt 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 Ð 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 Ð 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. Ñ 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://www.mnsu.edu/comdis/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