Teasing out covert elements From: Lynne Shields Date: 10/4/99 Time: 9:33:24 PM Remote Name: 126.96.36.199 Comments Scott and Bob, I'm glad to see that you are continuing the work on the scales, after hearing you speak about them at ASHA last year. My question as I read your paper this evening relates to the use of such scales when working with a client who isn't quite ready to admit to many of the feelings that are described in the scales. Do you have any data collected at this point that indicate whether the measures you are looking at might distinguish between the individual who really is not much bothered by his/her stuttering and the one who is terribly upset by it, but is at the stage of telling him/herself and others that it really doesn't cause them much concern. These folks might look 'fine' on first completing these scales and later, after some treatment, might appear to have regressed. I'd be interested in your comments. Enjoyed the paper and am very much looking forward to the final product. Lynne Re: Teasing out covert elements From: Date: 10/6/99 Time: 8:55:22 AM Remote Name: 188.8.131.52 Comments Hi Lynne Thanks for your note...BQ told me he sent a note earlier, but that the server didn't accept it for whatever reason. I think you're right that you can never know for sure if somebody's telling the truth about their answers. We have all seen people who are in denial. I think, though, that the process of answering the questions to fill out the survey can help to take people into that denial a bit. We address it in treatment and you're right, they might look worse on the scales a month in than they did at onset when they were denying. Of course, we also have that problem with impairment measures (frequency, duration, etc.) -- if the person is avoiding stuttering by avoiding speaking, then a month in to treatment, when they're talking more, they might also be stuttering more. We also have that problem due to the variability of stuttering. How many times have we had to write in a diagnostic report something like..."The client reported that his typical level of stuttering in day-to-day conversation is considerably higher than was evident in the present evaluation." These are the (arti)facts of measurement, and I expect they will also affect these instruments. Problem is, there is no objective means of measuring these concepts that we could use to validate the subjective measures. So, we're left with subjective measures all the way around. I guess the bottom line is that if the client's in denial, his data on the scales are not going to be representative, just as his answers to an interview are not going to be representative. I don't know an easy way around this... BUT, it's important think about it, and write caveats to this effect when we talk about these and other similar scales! Thanks for the comment. Take care, Scott Re: Teasing out covert elements From: Bob Quesal Date: 10/6/99 Time: 4:03:03 PM Remote Name: 184.108.40.206 Comments (These are the comments I tried to send yesterday.) Any scales like the ones we are developing are prone to "human error." We have to rely on our clients to be honest with us (and themselves) in their responses. For that reason, these scales might not be administered during the first *diagnostic* session, or even during an early therapy session. Depending on the client, there may be a need to establish some "trust" before the scales could be used. I'm sure that some people will use this argument to question the value of these scales--its's a fairly easy argument to make. The scales, however, would be just one of many assessments we would make. BQ Re: Teasing out covert elements From: Woody Starkweather Date: 10/21/99 Time: 3:34:22 PM Remote Name: 220.127.116.11 Comments Hi Bob and Scott: Thanks for a thoughtful and systematic paper. It is wonderful that someone is working on this problem, and it is particularly wonderful that it is two people who can think about with an appreciation for the complexity of it. In response to the previous question -- how will we know that people are being honest in their answers -- that question applies also to behavioral measures, although the people who advocate strictly behavioral measures seem not to have noticed. Stutterers are often quite adept at hiding their stuttering, and when put in a situation where stuttering is punished and/or fluency is rewarded can simply use some of their more subtle strategies to avoid the punishment and win the reward. But are they therefore more fluent? It doesn't seem to me that they are. They are using additional strategies, perhaps mental ones, that further complicate the act of speaking. The goal of treatment should be to SIMPLIFY the act of speaking, to reduce the effort that is put into it. So while they may find a reduction in the frequency of dysfluencies, these measures may well reflect and increase in the severity of the disorder. We recently had a case that illustrated this quite well. A three and a half year old girl was showing struggled repetitions and a few secondary behaviors. As we reduced some of the environmental factors in the clinic, her stuttering became simpler and less struggled. We had the parents make recordings at home, and it seemed that there too there was less stuttering because the frequency was reduced. But, as it happens, the mother also stutters, and she was able to pick up an increase, in the home environment, of a number of subtle secondary behaviors such as adopting a slightly different voice, acting "cute" to stall for time, and some little arm movements. The mother was justifiably worried that the little girl was improving only in the clinical situation. She was in fact, it seemed, getting worse in the home environment. I don't think any knowledgable clinician denies the important part that avoidance plays in stuttering. So why is it that people think, when they measure the frequency of stuttering, that they are really seeing what they think they are seeing? This is related to a quibble I have about your model. Mind you it is only a quibble. If you measure for outcome at the level where the goals are stated -- disability goals get evaluated at the disability level, handicap goals at the handicap level, etc. -- you miss the possibility of interaction between levels. Sometimes a change in one level is reflected by a countering change at another level, as in the example I gave before. The impairment seems to be improving, but it is only doing so because the disability level is worsening. I can imagine also a person who is becoming more comfortable with their stuttering, therefore hiding it less, therefore running into difficulties at work where people don't understand that sometimes more stuttering behavior means the person is getting better. Woody Re: Teasing out covert elements From: Bob Quesal Date: 10/21/99 Time: 4:56:29 PM Remote Name: 18.104.22.168 Comments Thanks for your comments, Woody. (Thanks for reading the paper--we thought no one was going to read except the very few who have posted here!) As far as your "quibble" is concerned, I think it's important to realize that although the scales are based on the "impairment, disability, handicap" framework, and although they do address those three levels, it really isn't possible to totally isolate the levels. I would wager that one of the criticisms we will receive is that the levels can't be clearly delineated. One other issue, related to your examples, is that in both cases, you are using OTHERS' reactions to or perceptions of the stuttering to determine whether the problem occurs at a specific level. The scales (and this may be another criticism) are based on the SPEAKER'S responses and perceptions. My take on your latter example would be this: if the person has become more comfortable with himself and his stuttering so that he is more willing to be disfluent in public, that is a positive outcome. If his coworkers are bothered by that, THEY have a problem that needs to be addressed. However, we may need a different set of scales to address that. ;-)>> I hope this doesn't sound like a flip answer. Your comments are good ones and they are appreciated. Bob Q. Re: Teasing out covert elements From: Scott Yaruss Date: 10/22/99 Time: 8:53:36 AM Remote Name: 22.214.171.124 Comments HI Woody Thanks much for your post and nice comments. (Too, like BQ, I'm glad somebody read the paper ;-) You've raised a really interesting issue, here. The proposal that we "measure at the level we treat" definitely will miss the interactions between levels. This is not ideal, but I'll provide a little rationale for why we proposed this. It has to do with the philosophical battles between various factions in the field. As we all know, there are some out there who prefer to treat just the stuttering behaviors (and your point about being able to hide the behaviors is an excellent one that is not frequently discussed). These people have suggested, directly or indirectly, that if you treat the behaviors, you'll automatically see changes in the other levels. (I don't think this is entirely true.) As a result, they've essentially proposed that these other levels are not necessarily their business. They're not trying to treat them, and so they feel they should not be held accountable for changes there. I don't agree with this position, because I think it IS our responsibility to treat the entire disorder -- or, put more humanely, the entire person. Stuttering is more than just the production of speech disfluencies. SO, why didn't we propose these as measures for all treatments? It has a little to do with the experience we had at the IFA convention in San Francisco when there was that unbelievable uproar over the fluency committee's proposal to develop an instrument to assess fluency, rather than stuttering. Remember how up-in-arms everybody got about the notion (not even the suggestion, because nobody suggested it) that we all use a standard measurement instrument? Unbelievable!!! So, rather than get into that battle of people saying "I can't be held accountable for changes in behaviors or experiences that my treatment is not designed to address" I essentially copped out, saying, okay - if you treat impairment, measure impairment. I try to treat more than that -- the whole disorder -- so I'm going to try to measure everything I can and look for changes in the other domains. It's far from satisfying, but I hold out the hope that the instruments will prove to be a valid and reliable way of measuring changes in the speaker's experience of the stuttering disorder and therefore WILL be applied across the board to a variety of treatments. This may provide a very helpful means of comparing treatments down the line, but I think this will come over time... Thanks for raising the issue and giving us a chance to explain our (twisted) rationale ;-) Scott outcome measures From: Salena Date: 10/6/99 Time: 10:36:48 PM Remote Name: 126.96.36.199 Comments I completely understand the need for data collection to justify therapy to third party payers. Is there concern that clinicians, particularily those who favor an eclectic treatment approach, will reject having to put criteria, like the ones you mentioned, on their clients? Re: outcome measures From: Bob Quesal Date: 10/7/99 Time: 8:47:18 AM Remote Name: 188.8.131.52 Comments Hi Salena: It seems clear that you have to have *some* kind of criteria to determine the "success" of any type of treatment, be it eclectic or anything else. Not everyone will agree with everything we have chosen to assess, but you have to assess *something*. I don't think we "put criteria" on clients, but I think that we need to determine what they want from therapy, and those things become the criteria for success. However, the criteria may change over the course of treatment. Admittedly, our scales cast a somewhat wide net. BQ Re: outcome measures From: JSY Date: 10/7/99 Time: 10:36:34 AM Remote Name: 184.108.40.206 Comments I guess from my perspective, the types of things we included in the scales are precisely focused at the eclectic treatment approaches. It's the less broadly focused treatments that might feel like we're focusing on "unnecessary" things... An interesting point, though, and worth further discussion... Issue of outcome measures From: Sheree Reese Date: 10/22/99 Time: 8:38:08 AM Remote Name: 220.127.116.11 Comments As health care changed over the past 10-15 years, my experience as a clinician in both in-patient (acute care hospital) and out-patient clinics, I learned quickly that without documentation of outcome measures, my ability to help clients would be severely limited. No population was more restricted (in terms of receiving reimbursement for therapy) that those with fluency problems. I'm thrilled that this is being addressed by two such qualified researchers and look forward to the final products. Re: Issue of outcome measures From: Scott Yaruss Date: 10/22/99 Time: 9:09:13 AM Remote Name: 18.104.22.168 Comments Hi Sheree Thanks much for your comments. One of our ulterior motives in pursuing this research is ultimately, down the line, and perhaps someday, to improve reimbursement for stuttering treatment. (This is secondary to addressing the ehtical dilemma of not adquately documenting our treatment, but still very important.) We don't have good documentation at present that the insurance companies can comprehend, and in part this is due to the lack of relevant measurement instruments. With luck, these instruments, or ones like them, will become standard enough that they will be recognized for documenting real-world outcomes for our clients and then, perhaps, we'll be able to improve coverage by third-party payers. Here in Pittsburgh, there's only 1 insurance company that I've found that covers stuttering treatment for adults. Unfortunately, it's the smallest one and most people don't have access to it yet. Thanks again for your comments! S Outcome of "Outcomes" From: Bob Quesal Date: 10/22/99 Time: 2:41:06 PM Remote Name: 22.214.171.124 Comments As we near the end of ISAD '99, I want to thank everyone who read this paper, and particularly want to thank the few who posted comments and questions. I guess "outcomes" isn't as compelling as some of the topics in this ISAD conference, but Scott and I feel that it is important and will continue to pursue this line of research. Or maybe no one got this far through the papers. ;-)>> Thanks to everyone who took part, thanks to Judy Kuster and Michael Sugarman, and particular thanks to my colleague and good friend Scott Yaruss. Bob Q. Re: Outcome of "Outcomes" From: Judy Kuster Date: 10/22/99 Time: 6:58:52 PM Remote Name: 126.96.36.199 Comments Important - vital. I don't have permission to post the name of the person who responded to your paper to me privately, but I will post what she said here because it speaks eloquently for all of us who want to make certain we will be able to continue, and expand services for those who stutter. She said: I will be looking for the third revised version of the outcome instruments at the 1999 ASHA Convention. Outcomes are becoming more and more a part of everyday clinical practice. I work at an academic teaching center and the more legitimate information we can provide as to the efficacy of our service, the longer I think we will be able to provide those services.