Documenting Individual Treatment Outcomes in Stuttering Therapy

Transcription

1 J. Scott Yaruss University of Pittsburgh, PA Documenting Individual Treatment Outcomes in Stuttering Therapy Of all of the communication disorders that are treated by speech-language pathologists, stuttering has been one of the most thoroughly and consistently studied. Speculation about the nature and treatment of stuttering dates back thousands of years, and research about stuttering dominated the early days of the field of speech-language pathology (see reviews in Bloodstein, 1993, 1995). Still, there is considerable disagreement among practitioners about many aspects of the disorder. For example, researchers debate which factors may contribute to the onset and development of stuttering (e.g., Smith & Kelly, 1997; Yairi, Ambrose, Paden, & Throneburg, 1996) and whether stuttering is associated with motoric or linguistic variables or both (see discussion in Conture, 2001). Clinicians and researchers together, ABSTRACT: The documentation of treatment outcomes is one of the most important issues facing the field of fluency disorders. Unfortunately, there are several factors that complicate the process of evaluating the results of treatment for people who stutter. This article addresses three key factors that can affect treatment outcomes research in stuttering: (a) the variability of stuttering, both between and within individuals who stutter; (b) differences between individuals in terms of the specific goals they set for their treatment; and (c) the diverse experiences that people who stutter may have in their treatment and in their lives in general. Specific recommendations for overcoming these challenges are presented, based on the careful consideration of individual differences between people who stutter when designing treatment programs and evaluating stuttering treatment outcomes. KEY WORDS: stuttering, treatment outcomes, efficacy, speech therapy meanwhile, continue to wonder about issues such as whether or when treatment should be recommended (e.g., Bernstein Ratner, 1997a; Curlee & Yairi, 1997) and, if so, which treatment approach(es) should be selected (Cordes, 1998; Ingham, 1993; Onslow, 2003). In recent years, one of the most broadly discussed aspects of stuttering therapy has been the measurement and evaluation of treatment outcomes (Conture, 1996; Cordes & Ingham, 1998; Ingham, 1993; Ingham & Riley, 1998). Although it is true that questions such as which treatment is best and what is the goal of treatment have been asked for years, the intensity of the debate has grown tremendously as researchers, clinicians, people who stutter, and others (e.g., third-party payers) have increasingly started to question the value of stuttering treatment. Put simply, we need to know if our treatments work. Unfortunately, determining whether or not treatments for stuttering (or any other disorder) are effective is no simple matter. When clinicians or researchers are seeking to assess treatment outcomes, they must consider a wide variety of factors (Frattali, 1998; Hicks, 1998; Olswang, 1998). Some fairly obvious factors include the success of the treatment (i.e., whether or not the client is able to achieve the stated treatment goals), the efficiency of treatment (i.e., the length of time required for the client to achieve the stated treatment goals), and the durability of the treatment effects (i.e., whether the client is able to maintain changes over time). On the surface, it would seem as if these factors would be relatively straightforward to measure, based either on the clinician s direct observation of the client s behavior or on the client s own reports (Ingham & Cordes, 1997). Unfortunately, however, there are several reasons that measuring the changes experienced by individuals in treatment for stuttering can pose a unique challenge. Examples of complicating factors include the variability of speech behaviors exhibited CONTEMPORARY ISSUES IN COMMUNICATION SCIENCE AND DISORDERS Volume Spring 2004 NSSLHA /04/

2 by people who stutter, variations in the characteristics of stuttering exhibited by different individuals who stutter, the broad range of treatment approaches that are available to speech-language pathologists who work with people who stutter, and the different reactions that people who stutter may have in response to various treatment techniques (see discussions in Manning, 1999; Shapiro, 1999; Yaruss, 2001; Zebrowski & Conture, 1998). In addition, when assessing outcomes of treatment for a disorder as complicated as stuttering, other, less tangible factors also come into play (Blood, 1993; Blood & Conture, 1998; Manning, 2001; Starkweather, 1993). Examples include the nature of the relationship between the client and clinician, the client s overall feeling of satisfaction with treatment, the diversity of experiences that people who stutter have during their lives, the client s comfort in applying techniques learned in treatment, and, ultimately, changes in the client s overall quality of life that may be associated with treatment. These aspects of treatment are harder to measure, yet, according to many people who stutter (e.g., Yaruss, Quesal, Reeves, et al., 2002), they are no less important. And, when combined with more standard treatment outcome challenges cited above, these concerns can complicate the measurement of treatment effects and make it difficult to interpret the results of outcomes from differing approaches to treatment. Such issues can also make it harder for researchers to make truly meaningful comparisons across individuals who stutter, across clinicians, and across techniques. Regardless of the challenges facing the field, clinicians must still strive to determine which treatment approaches are appropriate for the clients with whom they work, and scientists must still seek to evaluate the outcomes of those treatment approaches. For too long, the field has suffered from a lack of objective, empirical data about so many of the treatment approaches that are employed on a daily basis (Cordes, 1998; Ingham, 2003). The task of establishing and evaluating treatment outcomes, though difficult, is not impossible, provided clinicians and researchers are careful to account for potential pitfalls in both clinical work and research. When considering the issues that affect the evaluation of treatment outcomes, such as those mentioned above, a number of consistent themes can be identified. In general, these issues have to do with the nature of the disorder being addressed in treatment (e.g., the characteristics of the stuttering disorder), the preferences that clients and clinicians express for the outcomes of treatment (e.g., the goals of treatment), and the experiences clients may have during the course of treatment (e.g., the client s reaction to the clinician and to the treatment techniques) or in their lives in general. The purpose of this article is to explore some of these factors and to highlight the importance of considering individual differences when selecting a treatment approach for use with people who stutter. Specific factors to be discussed include (a) the variability of stuttering (both between and within people who stutter), (b) differences in the treatment goals preferred by different individuals who stutter, and (c) the wide variety of experiences that people who stutter may have, both in and out of treatment. The article will conclude with a series of recommendations designed to help clinicians and researchers consider the importance of individual differences when developing and evaluating treatment outcomes for people who stutter. WHAT YOU SEE IS NOT ALWAYS WHAT YOU GET One of the most straightforward and indisputable statements one might make about stuttering is simply that stuttering varies. Stuttering varies from one individual to another and, within a single individual, from one situation to another (see reviews in Bloodstein, 1995; Costello & Ingham, 1984; Yaruss, 1997a, 1997b). Between speakers, there are differences in the severity of stuttering, in the specific types of speech disfluencies that are produced, in the situations that elicit the most disfluencies, in the way speakers react to those disfluencies, and in the impact those disfluencies have on speakers lives. Within a given speaker, there are differences in the number of disfluencies exhibited in various settings, as well as in the number of disfluencies exhibited when speaking with different listeners, when talking about different topics, when saying different words, or when talking at different points in time. To complicate matters further, the ways people stutter, and the ways they react to stuttering, can vary dramatically during the course of their lives (Manning, 1999). Thus, the impact stuttering may have on a given speaker in childhood is likely to be quite different from the impact it will have on him or her as an adult. Although variability may be the hallmark of stuttering, the specific causes for variability are still not well understood. Researchers have identified some of the factors that appear to influence the likelihood that a speaker will exhibit disfluencies on some sounds or words or sentences more than others (see Bloodstein, 1995). For example, a considerable body of empirical research has demonstrated that people are more likely to exhibit disfluencies at the beginnings of words and sentences, on longer and syntactically more complex sentences, on words belonging to certain grammatical classes, and on words that convey more meaning within a sentence (e.g., Bernstein Ratner, 1997b). Still, even taken together, these factors cannot completely explain the occurrence of stuttering in conversational speech (Yaruss, 1997c). Sometimes, people just stutter, and the specific reasons for the stuttering are not entirely clear. Similarly, it is not known why a person may be able to speak relatively fluently in some seemingly stressful situations but not in others. For example, speakers may report that they anticipated stuttering in a certain situation, only to find that they were able to speak relatively fluently (Manning, 2001). Of course, the reverse is also true. Sometimes stuttering happens when people least expect it, even if they felt confident of their fluency when entering the situation, and even if they were trying to use treatment techniques. The unpredictable nature of stuttering can dramatically increase speakers frustration about their 50 CONTEMPORARY ISSUES IN COMMUNICATION SCIENCE AND DISORDERS Volume Spring 2004

3 communication difficulties, for they may never know exactly what will happen with their speech when they enter a particular situation. Another source of variability is due not to the speaking situation or the specific words that are being produced, but to the speaker s own attempts to try to speak more fluently (Johnson, 1961; Van Riper, 1982). It is important to recognize that stuttering can be embarrassing and frustrating. As a result, speakers may try to modify their speech in an attempt to prevent stuttering not with techniques they may have learned in therapy, but with strategies such as circumlocution (talking around their point); word substitution (trying to select words they can say fluently); or avoidance of sounds, words, or speaking situations (Van Riper, 1973; Williams, 1979). Note that stuttering can be so uncomfortable for speakers that these strategies may be attempted and maintained, even at the expense of effective communication or more fluent speech. Furthermore, these strategies may work to varying degrees in different situations, and this, too, can contribute to variability in observable stuttering behaviors. The variability between and within people who stutter poses a notable challenge for speech-language pathologists, for it can significantly complicate the diagnosis and treatment of the disorder. For example, a speaker who stutters quite severely in real-world situations may actually appear quite fluent during a diagnostic evaluation or when he is talking with the clinician during treatment. This can be particularly problematic when one is examining the efficacy of therapy techniques designed to enhance speech fluency, such as easy beginnings or prolonged speech (see reviews in Andrews, Guitar, & Howie, 1980; Bothe, 2002; St. Louis & Westbrook, 1987), though it also affects other approaches to treatment, such as those designed to reduce physical tension or to change the way the person stutters (see review in Van Riper, 1973; Williams & Dugan, 2002). People who stutter may experience considerable success using their techniques, or hitting their targets during therapy sessions, but find themselves utterly unable to apply the techniques in any meaningful fashion outside of therapy (e.g., Boberg, 1981; Yaruss & Reardon, 2003). Furthermore, because people who stutter may engage in avoidance or substitution behaviors in an attempt to prevent stuttering, it can be difficult or impossible for the clinician to determine, without verifying with the client, whether or not an individual experienced difficulty under the surface. The variability of stuttering also complicates the evaluation of treatment outcomes by making it harder to establish meaningful baseline rates when evaluating the frequency of stuttering (as described by Ingham & Riley, 1998) or the attitudes people may hold toward their communication abilities. Furthermore, it can be difficult to determine whether changes observed during the course of treatment are due specifically to strategies learned in treatment or to other experiences that the client may have that are unrelated, or only indirectly related, to the treatment. Sometimes such changes may simply be due to the natural variability of stuttering and may have relatively little to do with treatment. Although variability poses a number of challenges to clinicians and researchers seeking to evaluate the outcomes of stuttering treatment, the situation is not hopeless. There are many steps clinicians can take to improve their evaluation of treatment outcomes with their clients who stutter. First, clinicians must be certain that they understand the patterns in the stuttering behaviors exhibited by their clients by observing their clients speech over time. This may require a period of time where the client and clinician work primarily on learning about each other and about the client s stuttering. In most cases, more than one observation will be necessary to establish a meaningful baseline. Clinicians will need to work with their clients to ensure that they have a thorough understanding of the client s starting place at the beginning of therapy, both in terms of speech behaviors and in terms of communication attitudes. (Note that in some approaches to treatment, this might be described in terms of developing rapport or becoming in tune with the client [Manning, 2001]; in others, it may be accomplished through an extended baseline [Ingham & Riley, 1998].) Again, the only way that the client and clinician will be able to differentiate changes associated with treatment from changes that are associated with other factors or experiences is to be sure that they have a thorough understanding of the nature of the client s stuttering behaviors at the onset of treatment. In addition, as noted above, speakers may find it easier to speak fluently in some situations as compared to others (Costello & Ingham, 1984; Yaruss, 1997a). The only way clinicians can know whether treatment strategies are valuable for their clients is to observe their clients speech across situations. Of course, direct observation may not be feasible in all situations, and clinicians should recognize that their very presence may serve as a reminder or cue for their clients to use techniques that is not present when the clients are on their own. Therefore, clinicians will probably need to rely on their clients self-reports about success in different speaking situations (Ingham & Cordes, 1997). As always, when clinicians base their decisions on clients self-reported data, it will be important to verify that the clients are indeed providing accurate and reliable reports, and that their judgments about their success are not affected by denial or the desire to please the clinician. Still, by carefully combining direct observation with honest discussions with clients about their success across a wide variety of real-world situations, clinicians can seek to minimize the impact of variability on their ability to determine whether treatment is effective. In addition to improving clinicians ability to evaluate their treatment, this practice will also foster and support the clients generalization of treatment gains outside of the therapy setting and into their daily lives. Another way that clinicians can address the challenges associated with the variability of stuttering is to be careful not to over-interpret any changes they may see in the observable characteristics of stuttering during the course of treatment. This is true both for the purpose of documenting and diagnosing stuttering and for the purpose of assessing progress in therapy. Recalling the simple statement that stuttering varies can help clinicians and clients to not assign too much importance to day-to-day fluctuations in their surface behaviors. In addition to improving evaluation Yaruss: Documenting Individual Treatment Outcomes 51

4 of the ultimate outcome of treatment, this can help clients to recognize that such variability does not necessarily indicate relapse and help them learn to more successfully navigate the ups and downs inherent in dealing with stuttering. Clinicians must be sure to check with the client to determine whether any increased fluency that is observed during treatment is due to the client s attempts to use treatment techniques, or whether it is unmodified fluency that may have occurred without effort. This is not to say that unmodified fluency is not acceptable or appropriate. Many speakers are likely to experience increases in unmodified fluency as their ability to manage their speech increases and their confidence grows (Guitar, 1998; Manning, 2001; Shapiro, 1999). Still, clinicians should recognize that such fluency may not be the direct result of treatment activities that were designed to teach the speaker how to use speech modification techniques for improving fluency and, as such, should not be counted as evidence of the success of those aspects of treatment. Note that although the preceding examples focused primarily on strategies designed to increase speech fluency, the same cautions apply to other treatment techniques, such as those designed to reduce physical tension during stuttering (e.g., so-called stuttering modification approaches to treatment; Van Riper, 1973). Just as clinicians must be sure to verify that fluency techniques are available and helpful to clients in a variety of settings, they must also be sure that clients can successfully reduce physical tension during stuttering, or speak more freely regardless of stuttering, or enter feared situations, or minimize avoidance. Indeed, clinicians should evaluate the value of every aspect of their treatment, not just those that are most easily measured (Yaruss, 1998, 2001). More specifically, if a clinician is using a particular approach as part of a client s overall treatment program, then it is reasonable to assume that the clinician has a goal in mind, or a reason for employing that approach. It is incumbent on the clinician to ensure that the treatment approach has achieved its goal, regardless of the nature of the treatment approach. Unfortunately, as noted above (see also Ingham & Cordes, 1998), this has not always been the case in stuttering research, and there are some treatment approaches that have very little, if any, published efficacy data supporting their use. ADDRESSING THE CLIENT S COMPLAINT Of all of the issues that influence the evaluation of the success of treatment, one of the most important is whether or not the treatment addresses the concerns that caused the client to enter treatment in the first place. Baer (1988, 1990) described this as addressing the client s complaint. Treatment can be judged to be successful if it addresses the client s complaint; if it does not, then it would be hard to say that the treatment was effective. At first glance, it would seem that determining the nature of a client s complaint for individuals who stutter would be relatively straightforward: People who stutter must certainly want to eliminate their stuttering. Indeed, some authors seem to have gone so far as to suggest that stuttering is the only relevant complaint for people who stutter (Bothe, 2002; Ingham & Cordes, 1998; Ryan, 1979). Other authors contend that the situation is not that simple (Yaruss, 1998). Like all aspects of life, different people who stutter want different things from treatment. Evidence for the different goals that people have for their speech can be seen in numerous sources, such as books written by people who stutter, reflections about stuttering and speech therapy by speech-language pathologists, and the rather active and at times contentious discussions on electronic list servers for stuttering (Starkweather, 1995). As noted above, there are several different approaches to therapy, and different individuals (both clinicians and clients) appear to be drawn to different approaches (e.g., Manning, 2001; Shapiro, 1999). Indeed, it might be said that the mere proliferation of different treatment approaches attests to the fact that different individuals have been willing to try different things to overcome the difficulties they face in their speech. The challenges associated with the measurement and evaluation of treatment outcomes apply to all of these different approaches. Unfortunately, this does not mean that the procedures for evaluating treatment outcomes are the same for all clients. Indeed, nowhere is the variability of stuttering more apparent than in the consideration of what people want from therapy. The goals that different individuals set for their therapeutic intervention have significant implications, not only for the design and analysis of treatment programs, but also for the evaluation of treatment outcomes and the practice of evidence-based treatment. Specifically, it makes little sense for a clinician to use a treatment approach that is not designed to help the client achieve the particular goals he wishes to achieve in treatment, regardless of what the literature says about whether that treatment is effective for other individuals who have other treatment goals. Thus, if a person s primary goal is to learn to speak more fluently, then it would not be appropriate for a clinician to restrict treatment to those approaches based on helping the client learn to become more comfortable with stuttering. Of course, the reverse is true as well. Clinicians should not employ exclusively fluency-based treatment approaches for clients who simply wish to learn to communicate more easily or to feel better about themselves in spite of the fact that they stutter. And, if a client has multiple goals, then the clinician must be prepared to incorporate a variety of different techniques in a unique fashion to help the client address the specific complaint(s) that brought him to treatment. Thus, although the literature base in stuttering provides an important starting point, it cannot provide all of the information a clinician needs for planning treatment. The clinician must also work closely with the client to determine exactly what it is that the client wants from therapy. To be sure, some people who stutter do have the attainment of normally fluent speech as their primary goal in treatment. There is a sizable body of literature demonstrating that increased fluency should be possible (see review in Andrews et al., 1980; Bloodstein, 1995; Cordes, 1998). A wide variety of speech modification 52 CONTEMPORARY ISSUES IN COMMUNICATION SCIENCE AND DISORDERS Volume Spring 2004

5 techniques are available to improve speech fluency, including techniques such as prolonged speech, reduced speaking rate, easy beginnings, light articulatory contacts, and so on. As the research literature shows, these techniques can help people speak more fluently, at least some of the time. Unfortunately, there is also a sizable body of literature demonstrating that modified fluency is difficult to achieve and maintain for many individuals (Boberg, 1981; Craig, 1998). Indeed, some people appear to enroll in fluency-evoking treatments again and again without actually achieving that goal, or without being able to maintain it over time (Yaruss, Quesal, Reeves, et al., 2002). In part due to these high relapse rates for fluency-based treatments (e.g., Craig, 1998; Van Riper, 1973), and in part due to numerous other factors, some speakers may have different goals for their treatment. For example, some people may want to be able to speak more easily, with less physical tension during fluent or stuttered speech. Still others may simply want to feel better about themselves, regardless of whether they continue to stutter. The precise reasons for these differing treatment goals are complex and probably have more to do with speakers adaptations to their stuttering than with the specific characteristics of their speaking difficulties. Regardless of the reasons for these differences, however, the fact remains that different people have different goals for therapy. In order for clinicians to be able to ensure the efficacy of their treatment, they must work with their clients to determine what they want from therapy and then develop treatment strategies designed specifically to address their complaints. What Do People Want From Therapy? The prior section highlighted the need for clinicians and researchers to consider their clients goals in treatment. Unfortunately, at present, there is relatively little evidence about what people who stutter, as a group, want from treatment. It is clear that it is a dramatic oversimplification to assume that all people who stutter go to treatment solely in an effort to stop stuttering. Of course, improved fluency is a primary goal for many people who stutter (Ingham & Cordes, 1998), but it is not clear to what extent this goal is held by different individuals, or what other goals may be involved. Such information would be helpful for evaluating and comparing the outcomes of different treatment approaches. In recent years, the author and colleagues have sought to learn about the goals and preferences that people who stutter have for their treatment. For example, Yaruss, Quesal, Reeves, et al. (2002) surveyed members of the National Stuttering Association (NSA), the largest support group in the United States for people who stutter. The purpose of the survey was to learn about the experiences NSA members have had in their lives, both in treatment and in the support group. Questions gathered information about whether clients were receiving treatment or had received treatment in the past, how many times they had sought speech therapy, whether they judged their therapy to be successful, what the goals of treatment had been, and which components of treatment they had judged to be most beneficial or most troublesome. Analyses revealed that the vast majority of respondents had enrolled in treatment on more than one occasion in their lives, even though very few were in treatment at the time they completed the survey. Respondents indicated that they had participated in a wide variety of treatment approaches, including both fluency-based treatments (e.g., prolonged speech) and stuttering modification treatments (e.g., desensitization, tension reduction). Interestingly, respondents who had tried approaches that focused solely on speech fluency were more likely to report that they had experienced a relapse than were respondents who had tried approaches that focused on desensitization or approaches that combined various techniques for changing speech and reducing sensitivity to stuttering. Nevertheless, the majority of respondents did report that they found learning techniques to improve their fluency to be a beneficial component of treatment. A majority also reported that they benefited from learning to reduce their fear of stuttering (desensitization) and from meeting other people who stutter (e.g., in group therapy sessions). Among the factors that respondents indicated to be troublesome or disappointing were the fact that individuals could not maintain their fluency gains outside of the therapy room. Interestingly, approximately one third of respondents reported their disappointment that treatment did not sufficiently address their feelings about stuttering, and an equal number reported dissatisfaction because the speech techniques they were asked to use felt awkward or unnatural. The results from this study demonstrate the wide variety of experiences that people have had in their lives, and the vast differences between individuals in what people judge to be successful. Of course, such information does not constitute treatment outcomes research, but it does provide some useful information that can highlight issues that clinicians may need to consider when working with people who stutter. Another survey (Yaruss, Quesal, & Murphy, 2002) sought NSA members opinions about various issues in the field of fluency disorders. Whereas the first survey examined people s experiences in stuttering therapy, this second survey sought information about the goals and procedures they thought would be most appropriate for treating children and adults who stutter. Results from this survey revealed that people who stutter hold a wide variety of opinions about the purposes and procedures of stuttering therapy. Although a majority of respondents reported their belief that treatment should address both speech fluency and communication attitudes, a significant number of respondents also reported that the primary goal of treatment should be to help people speak more fluently. Thus, it seems clear that different people want different things from therapy. The variability in respondents answers to the questions on these two surveys are particularly notable in light of the fact that the membership of the NSA is probably a fairly homogeneous group in many ways. The mere fact that the participants in these two surveys had all opted to join a support group for people who stutter suggests that they may have broadly similar goals for changing their speech, Yaruss: Documenting Individual Treatment Outcomes 53

6 or that they may have had similar experiences in dealing with their stuttering. Still, the fact that such a high degree of variability was observed even in this sample of support group members highlights the differences that are likely to be observed in a broader, more representative sample of people who stutter. The consequences of this fact for interpreting stuttering research (and particularly evidencebased practice) cannot be underestimated. Given the dramatic differences seen between people who stutter in nearly every aspect of the disorder, it is clear that no amount of group data or population-based research will be able to provide clinicians with the information they need about the specific individuals with whom they are working. Indeed, if clinicians wish to understand the goals of therapy for a particular client they are seeing, there is only one way they can find out what those goals are they must ask the client. ONE SIZE DOES NOT FIT ALL It is clear that many of the various treatment approaches that have been developed for treating stuttering do appear to be effective for some, but not all, people who stutter. In fact, this is yet another aspect of the variability of the disorder between individuals, and again, this variability complicates the analysis of treatment outcomes. It is very difficult for clinicians or researchers to criticize a particular approach to therapy when there are numerous examples (either anecdotal or empirical) of people who have benefited from that treatment. Thus, as shown in the surveys referenced above, there are people who have experienced tremendous improvement as a result of fluency-shaping therapies, behavior modification therapies, stuttering modification therapies, desensitization therapies, altered auditory feedback therapies, counseling therapies, and a combination of all of these approaches. In fact, participants in the surveys even reported success with less mainstream approaches such as hypnosis, medication, psychotherapy, and kinesiology. Other people, however, have reported that treatment, whether mainstream or not, has not yielded the success they sought. How could people with the same communication disorder participate in the same therapies with such dramatically divergent results? There are numerous answers to this question, including the fact that different people are likely to define success differently, and the fact that different people have different experiences in therapy, even if the therapy approaches are supposed to be applied in a consistent fashion. Factors such as the nature of the client clinician relationship, the issues that are going on in the client s (or clinician s) life at the time of treatment, the client s level of effort or motivation in applying the treatment techniques, the client s evaluation of the acceptability of treatment goals or activities, the clinician s skill, and many other factors can play a role in influencing the speaker s experience in treatment. Again, the only way clinicians can help their clients achieve their own goals in therapy is to listen to their clients, become in tune with them, and be willing to adapt therapy to the individual needs of the different people with whom they work. Given the wide variety of strategies that seem to work, at least for some people who stutter, one might wonder how the field will ever arrive at agreement about which technique is most appropriate for helping people who stutter. In the author s opinion, such agreement will never be reached, and this is not necessarily a bad thing. The varied experiences of people who stutter prove that there is no one right way to treat stuttering, and that there is no one right set of treatment goals that should be applied to every person who stutters. As noted throughout this article, different people have different reasons for entering therapy, different goals for participating in therapy, and different experiences during the course of therapy. Therefore, it is not surprising that they would have different outcomes. Some researchers and clinicians may assert that the preceding statements are contrary to the principles of evidence-based practice (e.g., Ingham, 2003). Indeed, it is true that there are many aspects of traditional stuttering treatment that have not been subjected to sufficient, objective, empirical research to verify efficacy. What are clinicians to do if their clients have treatment goals involving desensitization to stuttering, reduction of physical tension, or other approaches that have not been validated through empirical research? At present, there is little empirical evidence to guide the use of these approaches, whether they are used by themselves or in combination with other, so-called evidence-based approaches focused on improving speech fluency. In this situation (which would appear to occur in a relatively large number of cases; Yaruss, Quesal, Reeves, et al., 2002), clinicians are left with no other choice than to work with the client to ascertain the nature of the client s goals for therapy, to select treatment strategies that are tolerable and satisfying to the client, and to determine whether the treatment strategies are helping the client achieve his or her goals. In other words, the clinician must work with the client to determine whether or not the treatment works. Of course, given the variability of stuttering and the individual difference between people who stutter, this situation is really no different from the situation faced by all clinicians. No matter what the goals of therapy, and no matter how well developed the treatment literature may be, clinicians must still use their clinical experience and expertise to adapt published treatment approaches to the needs of their individual client (Yaruss & Quesal, 2002). And, no matter what, the ultimate responsibility for documenting and evaluating the success of treatment falls to the clinician. Documenting Individual Treatment Outcomes The purpose of this article has been to highlight the importance of considering individual differences when evaluating the outcomes of stuttering treatment. Several issues have been raised that complicate the process of evaluating treatment outcomes, both in research and in clinical interaction. In each case, the solution has required 54 CONTEMPORARY ISSUES IN COMMUNICATION SCIENCE AND DISORDERS Volume Spring 2004

7 clinicians and researchers to work together with people who stutter to take into account the specific needs of each individual receiving treatment. This final section of the article will summarize several suggestions to help clinicians evaluate the success of their treatment for people who stutter. These recommendations will not be sufficient for evaluating the efficacy of treatments in a research setting. Furthermore, these recommendations are not new, and they are not unique to the author or to a particular approach to treating stuttering. They are simply offered here in the hopes that they will offer some assistance to clinicians who are faced with the challenge of documenting the outcomes of treatment in a clinical setting. (Specific references for these and other suggestions appear in the main body of the article.) Work with your client to determine the specific goals of treatment. Clinicians should not automatically assume that all clients who stutter necessarily want the same thing. Different people who stutter have different experiences in their lives and with their speech, and they want different things from treatment. The only person who can truly identify the client s goals for treatment is the client, so be sure to (a) develop rapport with the client, (b) empower the client to make choices in treatment (and in life in general), (c) listen to the client and do not impose your beliefs about stuttering on the client, and (d) give the client the opportunity to develop and grow during the course of treatment. Do not assume or require that all clients achieve the same outcomes in treatment. Often, treatment programs appear to assume that all clients in a certain treatment program will be able to achieve the same outcomes. An example would be a criterion level of 2% syllables stuttered, which has been established in some treatment programs (Ryan, 1979). It is, of course, quite likely that many clients will be able to achieve this seemingly arbitrary goal in certain speaking situations (e.g., the clinic or announced check-up recordings). Still, as the significant relapse rates for many treatment approaches clearly demonstrate (Craig, 1998), many clients have difficulty maintaining this level of success in different situations, or for any significant period of time. Thus, clinicians should allow for individual variability in different speakers ability to achieve treatment goals, and they should not blame the client (or themselves) if the client is unable to achieve or maintain the goals that have been selected. Collect meaningful baseline data and continue to collect data throughout treatment. It is probably somewhat obvious to say that clinicians cannot hope to document the outcomes of their treatment if they do not collect data during treatment. Nevertheless, as noted above, a substantial number of clinicians do not appear to be collecting data to ensure that treatment has been successful. Although there may be disagreement about what the nature of those data should be, it is at least a starting point to acknowledge that data must be collected and analyzed at the beginning of and throughout treatment. Collect data in multiple situations, both in and out of the clinic. Because the experience of stuttering can differ dramatically from one situation to another, it is not enough for clinicians to assume that the behaviors that are exhibited in the treatment setting are representative of the behaviors that are exhibited in other settings. Although clinicians cannot directly observe clients in all of the situations they face in their lives, they can work with clients to establish procedures for evaluating speech behaviors (and other factors, such as communication attitudes) in various situations. Examples of the evaluation of communication attitudes across settings may be accomplished through the administration of attitude inventories or self-efficacy scales that examine different speaking situations (e.g., Andrews & Cutler, 1974; Ornstein & Manning, 1985; Watson, 1988; an example of such a study can be seen in Boberg & Kully, 1994). Such testing can also be supplemented by systematic self-reports of the client s success with treatment goals in various real-world environments, tapes made by the client or clinician in settings other than the treatment room, and so on. Collect data about more than just speech fluency. Stuttering is a communication disorder that has the potential to affect all aspects of a person s life. Many treatment approaches account for this fact by addressing a broad range of factors as part of the treatment. In this case, data should be collected in all of the domains in which treatment is provided (Yaruss, 1998, 2001). Thus, if treatment is designed to address aspects such as the client s communication attitudes in addition to speech fluency, then data should be collected that demonstrate changes in the client s communication attitudes. Even if treatment is focused primarily on the elimination of stuttered speech (e.g., Bothe, 2002), it still seems reasonable for clinicians to ensure that the treatment is also reducing the negative impact of stuttering on the client s life overall (Yaruss & Quesal, in press). Do not be fooled by the variability of stuttering. When making measurements of stuttering behaviors, be sure to take into account the fact that stuttering varies. This can be done, in part, by completing measures in a variety of speaking situations. Vary factors such as the communication context, the communication partners, and the topic of communication. Of course, you cannot assess the client s speech in all situations; however, you can work with your clients to identify those situations that are most relevant or salient to their lives. Do not let your client be fooled by the variability of stuttering. There are a number of ways in which the variability of stuttering can be problematic for individuals who stutter. For example, clients can often achieve fluent or nearly fluent speech with relatively little effort when they are in the therapy room. This can lead them to believe that they are ready to produce fluent speech in other situations as well. In some cases, this will be true, and clients are likely to appreciate this increased fluency. In other situations, however, clients may experience difficulty achieving the same degree of fluency that they achieved in the clinic. This can lead to frustration and concern about their ability to succeed in treatment, and ultimately, it can diminish their effort or motivation. If clients understand the fact that stuttering varies, that the variations are not always easy to predict, and that variability is not a sign that they are doing anything wrong, then they will be better able to Yaruss: Documenting Individual Treatment Outcomes 55

8 tolerate variability and will become more accepting of dayto-day or situation-to-situation fluctuations in their speech. This can also help reduce the likelihood of catastrophic relapse, for clients may be less likely to over-interpret small increases or decreases in their speech fluency. Remember that the published empirical literature on stuttering is not yet complete. The field of fluency disorders has a sizeable base of empirical research on which to base treatment decisions. At present, however, this database is far from complete. The bulk of the existing research literature focuses on treatment approaches that are designed to evoke fluent speech. There is considerably less literature that is currently available on treatment approaches designed to help clients come to terms with their stuttering or feel less concerned about their speaking difficulties. To paraphrase Carl Sagan s famous quote, there is a difference between the absence of relevant evidence and the presence of counter-evidence. Currently, the field is experiencing the first situation the lack of needed evidence rather than the second situation the existence of evidence suggesting that such treatment is not effective. Therefore, arguments about the importance of evidence-based practice should not be used to restrict clinicians treatment options or to exclude certain treatment programs that have not yet been subjected to the rigors of empirical review. Clearly, more research is needed, particularly in the area of broad-based or so-called eclectic treatment approaches for stuttering. Until such research is available, however, the responsibility placed on individual clinicians to carefully document and evaluate the outcomes of their treatments with people who stutter becomes all the more important. In sum, although documenting treatment outcomes in stuttering poses some unique challenges, the task is not impossible. It is incumbent on clinicians to overcome these challenges and ensure that the treatments they provide are effective. By focusing on the needs of individual clients, and by collecting data across multiple domains and in multiple settings, clinicians can demonstrate and verify the changes they observe in treatment. The result will be improved clinical outcomes and a broader and more comprehensive empirical database to support the treatment of people who stutter. ACKNOWLEDGMENT The author is grateful to Dr. Robert Quesal and Kristin Pelczarski for helpful comments on a prior draft of this manuscript. Preparation of this manuscript was supported, in part, by NIH Grant R01 DC REFERENCES Andrews, G., & Cutler, J. (1974). Stuttering therapy: The relation between changes in symptom levels and attitudes. 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