2003 IFA Congress: Montreal, Canada

Many Types of Data: Stuttering Treatment Outcomes Beyond Fluency

Robert W. Quesal1, J. Scott Yaruss2, and Lawrence F. Molt3
1Communication Sciences and Disorders, Western Illinois University, Macomb, IL 61455, USA
2Department of Communication Sciences and Disorders, University of Pittsburgh, Pittsburgh, PA 15260, USA
3Department of Communication Disorders, Auburn University, Auburn, AL 36849, USA

SUMMARY

The purpose of this manuscript is to summarize arguments for supplementing the existing treatment outcomes literature with information drawn from a number of other relevant sources. The paper presents 4 case studies and asks whether existing literature provides all of the information needed to make appropriate treatment recommendations. In some cases, it is clear that the existing literature is helpful; in other cases, however, it appears that additional information is required. The paper concludes with suggestions for other aspects of the stuttering disorder that can be considered in clinical decision making and treatment outcomes research for evaluating the entirety of the experience of stuttering from the perspective of the speaker.

  1. Evaluating Stuttering Treatment Outcomes
Without question, research is required for demonstrating the efficacy of stuttering treatment approaches. There have been many efforts over the years to improve the research base of treatment efficacy in stuttering. These include the American Speech-Language-Hearing Association “s (ASHA) National Outcomes Measurement System (NOMS), efforts by ASHA’s Special Interest Division 4 (Fluency and Fluency Disorders), and various authors and studies (see reviews in Bloodstein, 1995; Cordes & lngham, l998). In spite of these efforts, treatment and research methodology is a point of major disagreement within the field, and treatment outcomes is an aspect of our field that is in need of considerably more research.

  1. Using Existing Research as a Guide for Selecting Treatments
The existing literature can provide an important guide to selecting valid treatments. Published studies on treatment outcomes help practitioners know that they are applying techniques that have shown to achieve a certain set of goals (that is to say, they have been shown to be “effective”). Still, the existing research base in stuttering does not always give us everything we need. Much of the existing outcomes literature is based on treatments that address easily observed aspects of stuttering, i.e., fluency. For example, O’Brian, Onslow, Cream, & Packman (2003) demonstrated reductions in stuttering associated with the use of prolonged speech therapy. This is very helpful information, of course, but for many people who stutter, the disorder consists of far more than just the visible speech behaviors. Many people who stutter also experience negative affective and cognitive reactions to their speaking difficulties, as well as a significant impact of stuttering on their ability to communicate in daily situations and accomplish their life goals (Cooper, 1997; Yaruss, 1998a; Yaruss & Quesal, in press). Unfortunately, there is relatively little research available at present that addresses these other, less observable but no less important, aspects of stuttering.

In examining whether the existing research base provides a sufficient level of information for making appropriate clinical decisions, we can ask two questions: I) Are All Clients the Same? 2) Do All Clients Respond to Treatment in the Same Way? If the answer to these questions is “yes,” then standardized programs are appropriate. If the answer is “no,” however, then individualized treatments are more appropriate, and we cannot say that any treatment is the “best” or “only” treatment.

Of course, it is apparent that all people who stutter are not the same. Given the wide variety of behaviors demonstrated by people who stutter, as well as the undeniable differences in the affective and cognitive reactions exhibited by different people who stutter, it would appear that different treatment approaches are likely to be necessary to help those who stutter. Furthermore, the existing literature on stuttering treatment makes it quite clear that people who stutter respond to treatment in different ways. Therefore, although the research base certainly provides a good starting place for making appropriate decisions about which therapy approaches to use with people who stutter, it is apparent that far more information is needed. The argument to made in this paper is simply that it is not enough to look at surface characteristics, as described in the empirical research. Clinicians must also be prepared to consider other types of data when making treatment decisions, some of which may not yet be confirmed by published studies.

Indeed, one of the key issues facing many speech-language pathologists trying to base their clinical interactions on published research is the inconsistency between what the literature says versus what is routinely encountered in clinical experience. We can explore the usefulness of the existing research base by considering real clients from our own caseloads and asking questions such as:

- What published data do we have to guide our practice for these individuals?
- Is that enough evidence to make appropriate decisions for these individuals?
- What other evidence might we need to consider?

Through the following examples, we will show that there are many things clinicians can learn from the literature, but there is also much more that we need to know to make appropriate treatment decisions.

Example #1
Frank, age 38, was originally diagnosed as exhibiting moderate-to-severe stuttering (scoring 28 on the Stuttering Severity Instrument-3 [Riley, 1994]), His average frequency of stuttering was 15% to 20% depending upon the situation, and he exhibited notable physical tension and struggle during disfluencies. He reported a significant impact on his daily life due to his stuttering, including difficulties with communication in everyday experiences and a dramatic reduction in his overall quality of life. Frank’s stated goal in entering therapy was to become “normally fluent” and his desire to achieve this goal had been supported by information he had found on the internet stating that all people who stutter should be able to speak “normally fluently.”

In examining this case, we can first ask, What Published Data Do We Have to Guide our Practice? There is a significant body of literature showing that sufficiently motivated individuals can improve their fluency dramatically through prolonged speech and other speech modification therapies (e. g. see Onslow & Packman, 1997.). Second, we can ask Is That Enough Evidence to Make Appropriate Decisions? In this case, the answer appears to be “Yes!” We have a client who wants a particular goal in therapy, and we have a research base that states that this goal should be attainable. Therefore, therapy can be implemented based on existing literature. Finally, we can ask, What Other Evidence Might We Need to Consider? In answer to this question, it would seem appropriate for us to carefully track his progress throughout therapy to ensure that he is gaining in his ability to speak fluently in both in-clinic and out-of-clinic situations, to maintain fluency gains over the long term, and to use techniques in novel situations and speak freely (and fluently, of course) wherever he goes. Thus, it is clear that the existing evidence base provides important information to help us determine an appropriate course of therapy for this individual.

Of course, the profile presented by Frank is not the only one for which these treatment recommendations would be appropriate. Nevertheless, there are other profiles and other situations which might not be as straightforward, as illustrated in the following examples:

Example #2
Charlie, age 3--, was originally diagnosed as exhibiting severe stuttering (score of 35 on the SSI-3). His average frequency of stuttering was 25% to 35%, with a higher frequency in oral reading. His stuttering was characterized by long duration disfluencies (> 10 seconds) with notable physical tension and struggle. Charlie was referred to the clinic in an emergency situation. He had been released from a military training program because of his severe stuttering. He was facing his final opportunity to complete the training, contingent on dramatic improvements in his fluency. He had already engaged in multiple attempts at therapy. He dad completed a computer-assisted intensive training program 5 times, as well as another intensive fluency shaping program one additional time. Each time, he exhibited minimal disfluency at the completion of therapy by using highly controlled speaking patterns. In each case, however, he experienced significant relapse within 2 weeks to 2 months following treatment. Because of his unique situation, Charlie was highly motivated. Stuttering had the potential to negatively impact his future and his career, and he was very eager to make changes in his speech and communication. Not surprisingly, Charlie’s primary goal for treatment was to improve fluency; however, he recognized that he had achieved (and lost) this fluency 6 times in the past. Therefore, his goal this time was specifically to be able to maintain fluency gains over the long term. i

This case represents a somewhat different situation than Frank. In examining Charlie’s experiences, we can ask, What Published Data Do We Have to Guide our Practice? As before, there is a significant body of literature showing that sufficiently motivated individuals can improve their fluency dramatically through prolonged speech and other speech modification therapies. Still, there is relatively little data supporting specific techniques for fluency maintenance, or the reasons relapse may occur. So, when we ask whether the literature provides Enough Evidence to Make Appropriate Decisions, the answer, in this case, must be “no.” Here, we have a client who wants a particular goal in therapy, and we have a research base that states that this goal should be attainable. But, this goal has been unattainable for this individual after multiple attempts. Clearly other factors must be operating and need to be addressed. Finally, when we ask What Other Evidence Might We Need to Consider? we can see that it will be critical to gather additional information from Charlie. For example we would need personal reports regarding Charlie’s impressions about why fluency has not been maintained in the pas :, as well as a systematic examination of other possible contributing factors. In this case, then, it would seem reasonable to consider an individualized “approach to approach to therapy, centering on specific contributing factors, rather than attempting to apply yet another programmed or intensive therapy. Of course, there may be other programmed approaches that could be considered (e.g., Camperdown - O’Brian et al., 2003). Still, given the client’s documented lack of success at being able to maintain such changes, one might question the wisdom of continuing to try the same strategies again and again without documented long-term success for this individual. Certainly, the client raised this point, and it seems reasonable to consider whether other approaches might be worthwhile.

Example #3
Amanda, age 21, was originally diagnosed as exhibiting mild stuttering (score of 12 on the SS1- 3), with minimal physical tension or struggle. However, she demonstrated considerable avoidance and circumlocution, and reported that stuttering had a significant impact on her life. Though she showed little overt stuttering, she reported considerable fear about stuttering. Specifically, she was concerned about how others would react, and she felt embarrassed whenever she produced a disfluency. Amanda had a significant history of prior therapy, including several attempts at therapy while in school, as well as attending an intensive three-week fluency shaping program. At the time she entered therapy, she was not sure if additional therapy would be of any value. The goals for Amanda’s treatment were that she would speak with less anxiety and fear. She wanted to stutter less, but primarily wanted to be able to speak freely. In essence, in the past, Amanda has been promised that therapy would make her fluent and she has become disillusioned. In addition, she has found her own “tricks” for coping with her stuttering, which cause even more difficulties.

Once again, we first ask, What Published Data Do We Have to Guide Our Practice? As before, the literature states that sufficiently motivated individuals can improve their fluency dramatically through prolonged speech and other speech modification therapies. The issue we face with Amanda is that she has tried these approaches before and, perhaps more importantly, she does not want to rely on targets or techniques. Second, Is That Enough Evidence to Make Appropriate Decisions? Unfortunately, there is Very little in the research literature guiding us about how to proceed with this type of client.

We know that there is a considerable literature about “stuttering modification” therapy (e. g. see Bloodstein, 1995; Culatta & Goldberg, 1995) but relatively little published outcomes data. The third question, What Other Evidence Might We Need to Consider? is particularly important for Amanda. We cannot simply track the frequency of stuttering to evaluate Amanda’s progress, She already knows how to “be fluent” through avoidance and circumlocution (e.g., Anderson & Felsenfeld, 2003); however, this is not satisfactory to her. It is clear that for Amanda, other types of evidence will be necessary. This would include evidence about the impact of stuttering on her life and her ability to speak freely. The most obvious source of this information is the client’s se1f-report, but other tools are available (e. g., OASES - Yaruss, 2001; Yaruss & Quesal, 2001).

Example #4
Jim, age 62, was originally diagnosed as exhibiting mild to moderate stuttering (SSI-3 = 14). He demonstrated less than 3% syllables stuttered (depending upon the situation). Although he occasionally demonstrated some physical tension/struggle, he generally spoke freely and frequently. However, stuttering had a significant impact on Jim’s life. He was convinced that nobody would accept him because of his stuttering. He had a minimal history of prior therapy. Jim’s stated -goals of therapy included: “Just get rid of the stuttering. . .,” â_ I need to be able to talk normally to do the things I want to do with my life!” â_ People always judge others because of their speech!” In essence, Jim was sick of feeling “less than” everybody else because of his speech, and he felt like this was his last chance to get this “thing” fixed.

What Published Data Do We Have to Guide Our Practice? We know that the literature says that Jim should be able to improve his fluency through speech modification. However, he clearly holds misconceptions about the role speech has played in his life, and about the importance of fluency. He talks freely and frequently; he just stutters sometimes. He has been held back, but is his speech really to blame? Is That Enough Evidence to Make Appropriate Decisions? Should he really be in a program that focuses solely on changing speech pattern to increase fluency? Though he stutters relatively little, he is significantly affected by it and he feels held back in every aspect of his life. The published literature tells us very little about what to do to help Jim. What Other Evidence Might We Need to Consider? Reductions in frequency of stuttering will tell us relatively little about Jim’s true progress toward his goals. We will also need to consider other factors, such as, how Jim feels about himself and his speech, how Jim perceives other people’s reactions to his speech, and Jim’s ability to manage occasional instances of physical tension. Once again, we are in a difficult situation if we must rely solely on published research to guide our practice.

As these examples show, the existing research base provides important evidence to help us make decisions about treatment, but the literature does not cover all possible scenarios. Sometimes clinicians may need to design individualized treatment programs...and Collect their own data to demonstrate the outcomes of their treatment.

  1. Considering Multiple Sources of Data
While existing treatment data focus primarily on surface fluency measurements, etiological and other forms of data point to a much more complicated situation. Surface data are important, but few could argue that stuttering consists only of speech disfluencies. For example, linguistic, physiological, and psychological research has identified several ways people who stutter as a group differ from people who do not (see review in Bloodstein, 1995). Theoretical models of stuttering propose that stuttering is a complex disorder with multiple contributing or influencing domains. For example, stuttering has been described in the literature in a variety of ways: - a multidimensional, nonlinear, dynamic disorder (Smith & Kelly, 1997) - a heterogeneous disorder including affective, cognitive, behavioral components (Guitar, 1998)

- a multidimensional problem including cognitive, affective, linguistic, motor, and social components (Norris, et al., 1998)
- can have a negative effect on social development and can result in negative attitudes & feelings towards speech (Logan & Yaruss, 1999)
- can be viewed in terms of speech impairment, personal and listener reactions, and limitations in daily activity (Yaruss & Quesal, in press)

It is likely that existing efficacy data are based largely on surface behaviors of stuttering primarily because these are the most easily measured aspects of the stuttering disorder (cf. Cordes & Ingham, 1994). Still, as we have shown with the examples above, they are not necessarily the most relevant measures for all individuals who seek treatment. Furthermore, it is worth noting that these data are typically collected in structured situations and may not be reflective of clients’ true speech in all situations.

Much additional data exists, but it is not in the form of peer-reviewed journal articles. One might argue whether this non-published research (data) has any value. Many years ago, Bloodstein (1988) pointed out that not all naturally-occurring human behavior can easily be brought into the laboratory. It is difficult to design studies to capture the human experience, and specifically the human experience of stuttering. Clearly more evidence, or evidence of a different sort, is needed. We suggest, therefore, that there are many sources of additional data, and these might take many forms. These would include severity rating scales (tension, struggle, secondary behaviors, etc.), measures of general communication effectiveness, the speaker’s perceptions about stuttering, attitudinal scales and psychological indicators (e.g., Locus of Control of Behavior, Semantic Differential), as well as other “real-world” measures (e.g., Functional Communication and Quality of Life measures).

Many clients have individualized desires, needs, and goals for therapy that must be addressed on a case-by-case basis. Therefore, we believe that we should structure our therapy individually for each client. The task, while challenging, is certainly not impossible. Many tools for accomplishing broad-based measurement do exist, but they have not been widely used in the existing research literature. We must begin by collecting broad-based measures involving more than just surface speech behaviors. One of the criticisms of these measures, of course, is that many of them are based on clients’ self-report. We would suggest, however, that client self-report should actually be a central part of treatment outcomes research (Ingham & Cordes, 1997). We further suggest that client self- reports, collected carefully (and reliably) over a long period of time, do actually constitute valuable and meaningful outcomes data. The shortcomings discussed above may be in how systematically we have catalogued these data in the past, rather than in the nature of the data.

  1. Conclusion
In sum, our goal in this paper has been to suggest that our stuttering treatments and treatment outcomes will be improved if we adopt a multi-pronged approach. We should emphasize measurement of multiple aspects of the speaker’s experience, with specific attention paid to individualized measurement of factors of importance to each speaker. To provide the most efficacious, beneficial treatment for all people who stutter, we must go beyond the existing, (presently) limited research base. It is important that we continue to expand that research base and provide data to support these multiple outcomes in stuttering (Yaruss, 1998a, b; Yaruss & Quesal, in press).

References

Anderson, T.K., & Felsenfeld, S. (2003). A thematic analysis of late recovery from stuttering. American Journal of Speech-Language Pathology, 12, 243-253.
Bloodstein, O. (1988). Science and communication disorders: Letter to the editor. Journal of Speech, and Hearing Disorders, 53, 347-348.
Bloodstein, O. (1995). A handbook on stuttering (5th ed.). San Diego, CA: Singular Publishing Group, Inc.
Cooper, E.B. (1997). Fluency Disorders. In: T.A. Crowe (Ed.). Applications of counseling in speech- language pathology and audiology. Baltimore: Williams & Wilkins.
Cordes, A.K., & Ingham, R.J. (l994).The reliability of observational data: II. Issues in the identification and measurement of stuttering events. Journal of Speech and Hearing Research, 37, 279-294.
Cordes, A.K., & Ingham, RI. (1998). Treatment Efiicacy for Stuttering: A Search for Empirical Data. San Diego, CA: Singular Publishing Group, Inc.
Culatta, R., & Goldberg, S.A. (1995). Stuttering therapy: An integrated approach to theory and practice. Needham Heights, MA: Allyn & Bacon.
Guitar, B. (1998). Stuttering: An integrated approach to its nature and treatment. Baltimore: Williams & Wilkins.
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Yamss, J.S. (1998a). Describing the consequences of disorders: Stuttering and the International Classification of Impairments, Disabilities, and Handicaps. Journal of Speech, Language, and Hearing Research, 41, 249-257.
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Yaruss, J.S., & Quesal, R.W. (2001). Developing instruments for documenting stuttering treatment outcomes. In H-G. Bosshardt, J.S. Yaruss, & H.F.M. Peters (Eds.), Fluency Disorders: Theory, Research, Treatment, and Self-Help (Proceedings of the Third World Congress on Fluency Disorders) (pp. 227-221). Nijmegen, The Netherlands: Nijmegen University Press.
Yaruss, J .S., & Quesal, R.W. (in press). Stuttering and the International Classification of Functioning, Disability, and Health (ICF): An update. Journal of Communication Disorders.

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