|About the presenter: Nan Bernstein Ratner, Ed.D., C.C.C. is Professor and Chair, Department of Hearing and Speech Sciences, University of Maryland at College Park. She is the editor of numerous volumes, and author of numerous chapters and articles addressing language acquisition and fluency in children. Dr. Ratner currently serves as Co-editor of Seminars in Speech and Language.She is a frequently-invited presenter at state, national and international speech, language and hearing association meetings. Dr. Ratner is an ASHA fellow, was a member of the original cadre of Board Recognized Fluency Specialists, and received the 2006 Distinguished Research Award from the International Fluency Association.|
|About the presenter: Bob Quesal, Ph.D., is a professor of Communication Sciences and Disorders at Western Illinois University. He is a Board Recognized Specialist in Fluency Disorders. In addition to teaching, Dr. Quesal conducts research, primarily in the area of stuttering. His research focuses on the psychosocial aspects of stuttering, including the speakerıs experience of stuttering, and teasing and bullying. He was a member of the Steering Committee for Special Interest Division 4 for Fluency and Fluency Disorders from 2002-04 and served as associate coordinator in 2003 and 2004. He was recently named a Fellow of the American Speech-Language-Hearing Association.|
Over a decade ago, the American Speech-Language-Hearing Association's Special Interest Division 4 for Fluency and Fluency Disorders hosted two Leadership Conferences that were devoted to the discussion of "outcomes" in stuttering treatment. The first of these was held in Tucson in 1997. Outcomes were defined from the perspective of a number of potential stakeholder groups, such as the clients themselves (or their immediate families), clinicians, society at large, and potential third party payers of stuttering treatment. Cost/benefit considerations were also addressed. At the conclusion of that conference, we summarized the division's consensus regarding the current state and needs regarding outcome assessment in stuttering (BernsteinRatner & Quesal, 1998). The outcomes from that conference are listed below:
Preferred client outcomes
As a result of therapy, the client should be able to positively rate the following outcomes:
(These outcome statements presume an adult client. Though time did not permit formal discussion, it was recognized that outcomes for therapy provided to children would have to be adjusted to reflect their particular concerns, and those of their parents).
Preferred clinical outcomes
The preferred treatment outcome relative to the clinician is that the client will demonstrate feelings, behaviors, and thinking that lead to improved communicative performance and satisfaction with the therapy process.
These outcomes can be operationally defined to include the following:
Financial outcomes of therapy should include:
Third party payers (e.g., insurance companies, educational systems, rehabilitation agencies) The preferred fluency treatment program is cost-effective and results in the client's satisfaction with the services provided.
Preferred outcomes of stuttering treatment relative to the payer are that:
We noted at the end of that article "These outcome statements should be considered as works in progress,' rather than absolutes. These statements will form the basis for the 1998 Leadership Conference at Marco Island, FL, during which Division 4 affiliates will determine mechanisms for measuring these outcomes. This task may prove more daunting than developing the outcome statements...." (p. 7)
In this paper, with the benefit of 20-20 hindsight, we will address some of the changes that have occurred since our initial statement of desired outcomes of fluency treatment. We will finish each section of this discussion with some thoughts about work that still needs to be done to define and achieve the full range of desired outcomes of fluency treatment.
(MORE) THAN A DECADE LATER: REVISITING DESIRED OUTCOMES:
First, among the client/family stakeholders, there has been a very observable increase in emphasis upon the needs of the toddler client and the toddler's family. It seems quite clear that families are no longer either confused about the need for early intervention or complacent about waiting for early stuttering to go away on its own. There has been a clear emphasis in the professional discipline on the development of effective treatments for this population, although it has not been without controversy; there has been active professional (publication-based) as well as consumer-based (e.g., Listservs, discussion groups, web sites) discussion regarding the relative effectiveness of competing treatments (e.g., Lidcombe (Onslow, Packman and colleagues), Demands and Capacities-focused treatment (Franken and colleagues), and family-focused treatment (e.g., Yaruss and colleagues), just to name a few working in toddler-focused therapies.
Although it is in its infancy, we have seen the emergence of what are called QUALY or QOL measures (Quality of Life indices). Unlike traditional measures of impairment and handicap, such measures document, in a medically accepted and standardized approach, the relative costs and benefits of remediating a disorder in a pragmatic way, and have recently been applied to stuttering (Bramlett, Bothe & Franic, 2006; Craig, Blumgart & Tran, in press ).
A much more obvious trend has been to see that both the availability and reporting of outcome measures that address the affective and cognitive components of stuttering are increasing. Since 1997, we have seen the development, publication and widespread use and research reporting of devices such as the OASES (Yaruss & Quesal, 2006; 2008), the WASSP (Wright & Ayre; 2000), and the KiddyCAT (Vanryckeghem & Brutten, 2006). With this trend, it has become more obvious to all stakeholders that one cannot necessarily claim success in a treatment without making sure your outcomes don't bring other undesirable outcomes with them, or even that affective and/or cognitive outcomes do not reflect meaningful change from baseline. There is what we believe to be increasing discussion of the benefits of programs that do not necessarily make lasting significant changes in fluency, but do appear to durably change attitudes and thoughts (Blomgren, Roy, Callister & Merrill, 2005). As with other areas of our field, there has been active discussion of the merits of balancing such outcomes against more traditional indices of "success" in treatment.
Many years after Bloodstein (1981) first called for long-term follow-up as a critical measure of program outcome, we are beginning to see a higher degree of attention paid to this problem. While a proportion of research has explored outcomes in children, who are notoriously "better at getting and staying better" (see results of treatment outcomes studies summarized in Bloodstein and Bernstein Ratner, 2008, Appendix), we have also seen an increase in published reports of adult treatments that report follow-up characteristics, although it is still rare to find reports that exceed a rather limited time frame.
With the growth of the Internet, there are more avenues for clients to express opinions regarding treatment. It appears that there are increasingly more ways for clients and families to get fairly up-to-date and accurate information about stuttering (via highly trafficked websites) and also to utilize some treatment approaches without benefit of traditional therapy in "real world settings" (e.g., the emergence of altered auditory feedback programs for use with iPods, iPhone and other PDA-type devices (e.g., Science Daily, October 2007; http://www.sciencedaily.com/releases/2007/09/070928204447.htm)
Family stakeholders increasingly, if we are to take what we read on blogs and Listservs as a sense of what the stuttering community wants, want more accountability from the professionals who work with PWS. This can be both an asset and a hindrance to responsible progress in the field of stuttering treatment, because while stakeholders are much more likely to read published information about stuttering (both its nature and treatment), they don't necessarily understand some of the relevant aspects of reporting (such as differences between adult and child treatments, meaningfulness of reported treatment outcomes and their durability, and possible risk factors associated with some treatments (e.g., pharmacological approaches). The data they see are filtered, either by the media, stakeholders who have financial interests (e.g. therapy and device vendors), research "ownership" interests (e.g., research/publication groups seeking to validate and publicize findings) or even the hosts of websites, who may have very real and vocal opinions about "best approaches" in assessment and treatment.
Because of their increasing knowledge levels and changes in how we approach therapy, for both adults and for children, PWS and their families can (and do) more frequently take for granted that they will be a part of therapy, not something we saw as much of in previous years. It is more acceptable for the outcome desires of clients and families to be incorporated into treatment plans, and basically universal that treatments for very young children will involve the education and active, instructed involvement of their parents and caregivers (Bernstein Ratner & Guitar, 2006).
Clinician stakeholders face a number of changes since 1997. First and most importantly, because of the emergence of so-called "evidence-based practice" (EBP, also termed evidence-based medicine), there has been more emphasis during their professional education on "doing what works" where "works" is defined by more than the response of the person in front of them. They are increasingly desirous of (and sometimes required to) employ procedures that have been validated by the published outcomes of peer-reviewed studies of reasonably large numbers of clients. This has been both good and bad, not because EBP is a bad thing, but because of some associated problems. First, many clinicians who want to do EBP aren't necessarily geared up for it. Many lack access to timely, high-quality published information once they leave graduate training and the easy availability of library resources (Nail-Chiwetalu & Bernstein Ratner, 2007); almost all complain that they can't keep up with the emergence of information across their many areas of practice, which usually exceed treating only those with fluency problems. There is continuing debate (academically) and uncertainty (professionally) over the status and relative worth of treatments that have large amounts of data vs. those having less data, as well as the difference between the amount of data supporting a treatment vs. the quality and durability of reported results. We have become more acutely aware that absence of evidence on treatment effectiveness is not evidence of absence of treatment effectiveness (Bernstein Ratner, 2005). This problem in the access to and appropriate interpretation of treatment outcome reports is not limited to SLPs we are increasingly dealing more with families and third party payers who either demand such information or require SLPs' assistance in its appropriate interpretation and application. It is clear that the field of fluency disorders needs to facilitate an increase in information literacy in SLPs, otherwise they may fall victim to the loudest voices they can easily hear: those with proprietary interests in vending their programs or wares. In the defense of SLPs and virtually every other medical and paramedical discipline out there, no one is distilling, and integrating and disseminating the relevant data to them. This may eventually be the role of "umbrella" professional organizations (e.g., ASHA, IFA, CASLPA, etc.) and consumer organizations (e.g., SFA, NSA, BSA, ISA, ELSA, etc.).
The attitude of third party payers, already quite in evidence in 1997 is even more obvious now. The field of SLP, and with it, fluency treatment, is in the same situation as other fields now flooded with EBP-driven policies: "show me the data" if you want coverage. Despite the increased acknowledgment that fluency may be a chronic condition for adults, requiring long-term attention, the criteria for what works in the mind of third-party payers is mainly cure-based, which is not good for social/cognitive therapies for stuttering or any other chronic diseases. There is a risk that fast and limited behavioral outcomes may increase the willingness of such payers to support the use of devices and drugs if we can't get better data on the short- as well as long-term benefits of "traditional" therapies that address behavioral, cognitive and affective features of stuttering.
Payment for treatment of fluency disorders remains a consistent challenge, as it does for many other communication disorders. It is also the case that historical "codes" for the diagnosis of stuttering reflect outmoded views of the nature of the condition that are no longer accurate and can be viewed as prejudicial (e.g., the current ICD and DSM codes that place stuttering as a mental disorder along with disorders such as bulimia, bed-wetting and thumb-sucking (Maguire & Bernstein Ratner, 2009)). ASHA, NSA, SFA and other groups are working on coding changes, with the cooperation of the American Psychiatric Association, that would more accurately describe stuttering and facilitate its treatment (e.g., allowing potential concomitant diagnosis of social phobia; discriminating between "developmental" and acquired stuttering, etc.). However, code changes that better describe stuttering don't easily translate into coverage benefits, which still require our active attention.
More than a decade after our original discussion, we find new stakeholders in fluency: most notably device and drug manufacturers, who have a substantial investment in their treatment approaches, as well as governmental agencies (particularly local rehabilitative and educational groups who place increased emphasis on accountability, on outcomes and on comparative effectiveness for the investment of resources). While "branding" of therapies was always there for a small number of approaches (e.g., Schwartz's therapy, Monterey Fluency Therapy, McGuire therapy) we now conventionally hear all stakeholders reference Lidcombe, SpeechEasy©, Pagaclone and other therapies "owned" to some or all extent by companies or other organizations.
How have societal outcomes changed? Particularly with the leadership influence of St. Louis and his many colleagues around the world, we have seen the development and testing of devices such as the International Scale of Attitudes, which greatly informs the impact of stuttering on the individual and his/her own, specific, larger society. It appears to us that there has been positive improvement in how stuttering is portrayed in the media (e.g., on MTV's Real Life, in the widely distributed film Rocket Science). The problem of stuttering appears to increase international visibility, as well as concern (more evident knowledge of IFA, ISA, ICA).
So, in the intervening years, have our desired outcomes changed for the better or for the worse? Have they become more or less pragmatic, desirable or achievable? Have we made substantive improvement in achieving them? We would submit that today we have more tools available for assessing stuttering in a more comprehensive manner than we did in 1998. It also appears that more people are aware that, at least in some cases, stuttering is a life-long disorder and that, because of this fact, simple changes in surface fluency may be insufficient to capture the nature of "improvement" as a result of treatment. Arguably the most important stakeholders - PWS - frequently report that therapy that addresses cognitive and affective features of stuttering has the most long-term benefit to them (Yaruss, Quesal, & Murphy, 2002; Yaruss et al., 2002). Unfortunately, because those "under the surface" features are among the most difficult to measure (and appear to be difficult to understand for many people who do not stutter), it appears that we still have a lot of work ahead of us if others (SLPs, families, payers) are to agree with PWS about the desirability of therapy that effectively addresses these features of stuttering.
That, however, does not diminish the progress we have made in the past decade (plus). The need for outcome assessment is as important today as it ever has been. We have observed changes in how we define success, but, as with many other things in stuttering, have not reached universal agreement on a single best way to define or measure success in stuttering treatment. Perhaps the most important difference between today and 1998 is that long-term success, rather than a transient "quick-fix" is an agreed-upon desired outcome, and that increasingly, the voices of multiple stakeholders are considered valuable in our discussion of how to obtain and measure that success.
Bernstein Ratner, N. (2005). Evidence-based practice in stuttering: some questions to consider. Journal of Fluency Disorders, 30, 163-188.
Bernstein Ratner, N. & Guitar, B. (2006). Treatment of very early stuttering and parent-administered therapies: the state of the art. In N. Bernstein Ratner & J. Tetnowski (eds.), Current issues in stuttering research and practice (pp. 99-124). Mahwah, NJ: Lawrence Erlbaum.
Bernstein Ratner, N., & Quesal, B. (1998). Report on the 1997 Leadership Conference in Tucson. Perspectives in Fluency and Fluency Disorders, 8: 6 - 7.
Blomgren, M., Roy, N., Callister, T. & Merrill, R. (2005). Intensive stuttering modification therapy: a multidimensional assessment of treatment outcomes. Journal of Speech, Language and Hearing Research, 48, 509-23.
Bloodstein, O. (1981). A handbook on stuttering (3rd ed.) Chicago, IL: National Easter Seals Society.
Bloodstein, O., & Bernstein Ratner, N. (2008). A handbook on stuttering (6th ed.). New York: Cengage.
Bramlett, R., Bothe, A. & Franic, D. (2006). Using Preference-Based Measures to Assess Quality of Life in Stuttering. Journal of Speech, Language and Hearing Research, 49, 381-394.
Craig, A., Blumgart, E. & Tran, Y. (in press). The impact of stuttering on the quality of life in adults who stutter. Journal of Fluency Disorders.
Maguire, G. & Bernstein Ratner, N. (2009, August). Stuttering and the ICD: a debate within our professions. Sixth World Congress on Fluency Disorders, Rio de Janeiro.
Nail-Chiwetalu, B. & Bernstein Ratner. N. (2007). Assessment of the Information-Seeking Abilities and Needs of Practicing Speech-Language Pathologists. Journal of the Medical Library Association, 95, 182-188.
Onslow, M., Packman, A., & Harrison, E. (2003). The Lidcombe Program of early stuttering intervention: A clinician's guide. Austin, TX: Pro-Ed.
Vanryckeghem, M. & Brutten, G. (2006). KiddyCAT: Communication Attitude Test for Preschool and Kindergarten Children Who Stutter. San Diego: Plural
Wright, L. & Ayre, A. (2000). Wright & Ayre Stuttering Self-Rating Profile. Bicester, Oxon: Winslow Press.
Yaruss, J.S., & Quesal, R.W. (2006). Overall assessment of the speaker's experience of stuttering (OASES): Documenting multiple outcomes in stuttering treatment. Journal of Fluency Disorders, 31, 90-115.
Yaruss, J.S., & Quesal, R.W. (2008). OASES: Overall Assessment of the Speaker's Experience of Stuttering. Minneapolis, MN: NCS Pearson, Inc.
Yaruss, J.S., Quesal, R.W., Reeves, L., Molt, L., Kluetz, B., Caruso, A.J., Lewis, F., & McClure, J. (2002). Speech Treatment and Support Group Experiences of People Who Participate in the National Stuttering Association. Journal of Fluency Disorders, 27 (2), 115-134.
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