Notes from the 1997 Special Interest Division 4 (Fluency and Fluency Disorders) Leadership Conference in Tucson

Compiled by:
Nan Bernstein Ratner , U. of Maryland-College Park
Bob Quesal, Western Illinois University

At the 1997 Leadership Conference, affliates of Special Interest Division 4 considered a number of issues that bear on stuttering treatment outcome. Guided by Dr. Lee Sechrest, the group noted that stuttering outcomes might be measured by efficacy studies or by effectiveness studies. In the first case, clinicians discover whether treatments have their intended outcomes under optimal circumstances (such as might occur during a carefully controlled clinical trial). In effectiveness studies, one measures whether stuttering treatments achieve their intended effects under ordinary circumstances.

A number of issues relate to the outcomes of any therapeutic process. First, we need to ascertain whether a therapy approach achieves its behavioral goals. This is a primary goal of the ASHA FACs being developed for the spectrum of communicative disorders and their treatment. However, providers, clients and third-party payers often have other concerns about outcomes. For example, one may be concerned that the functional status of the individual undergoes change: that they are able to achieve functional performance in aspects of their lives that previously were denied them. Less easily measured but no less important is "quality of life", a concept for which epidemiologists are now beginning to develop procedures to measure bjectively (as in "quality-adjusted life years"). Finally, both society and the individual increasingly weigh the cost (financial charges and/or time expended) of any treatment against its benefits. The individual, society, and third-party payers for therapeutic services may weight these costs and benefits differently. In any event, it is imperative that providers of stuttering therapy establish tangible and measurable desired outcomes for their services. The establishment of such outcomes allows individual providers and clients to gauge whether a particular therapeutic regimen achieves its goals, and if so, whether it does so in a cost- or time-effective manner. Desired therapeutic outcomes for stuttering services should include those valued by clients, by service providers, by society and by third-party payers.

With these issues in mind, the attendees of the Fourth Annual Leadership Conference broke into study groups to formulate desired outcomes of treatment for stuttering. The groups were divided to consider how various constituent groups might view desired outcomes. The constituent groups under consideration were: the individual who stutters (client), the service provider (clinician), the individual who pays for services, third-party payers (such as managed care organizations (MCOs)), and society at large. Each working group developed a list of desired outcomes. A large focus of discussion in group and plenary sessions was whether the desired outcome of fluency services could be gauged solely by the measurable fluency of the client before and after therapy. There was large consensus that desired outcomes must also reflect changes in the affective and cognitive states of the client following therapy. A list of desired outcomes was presented for each constituent group, in plenary for discussion and comment, and amended following open discussion. The list below reflects the consensus that the plenary session attendees achieved on desired outcomes of fluency therapy. (Some of the outcomes listed below have been edited to achieve editorial consistency.)

Preferred client outcomes

As a result of therapy, the client should be able to positively rate the following outcomes:

I am satisfied with my therapy program.
I am satisfied with the outcome of my therapy program.
The therapy goals that I developed with my clinician were met.
I have an increased ability to communicate effectively.
I feel more comfortable as a speaker.
I like the way I sound.
I have an increased sense of control over speech, including stuttering.
My speech has become more fluent.
I am independently able to employ a variety of techniques and strategies as appropriate.
My understanding of stuttering and fluency has increased.
My speaking skills have become more automatic.
I have an increased ability to cope with variability of stuttering and relapse.
I am better able to reach:
- social potential and goals
- educational potential and goals
- vocational potential and goals.
My knowledge of self-help/support options has been increased.
Given my demonstrated ability to progress, I could benefit from continued therapy.

(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:

Frequency of stuttering is reduced in variety of settings.
Severity (duration, tension, evident struggle) of stuttering is reduced in variety of settings.
Speech sounds natural (intonation, loudness, rate) in variety of settings.
Speech fluency has increased.
Client has increased volitional communication.
Speaking interactions are pragmatically appropriate (e.g., eye gaze, turn-taking) in a variety of settings.
Client is able to use techniques independently in a variety of settings.
Avoidance behaviors have been reduced.
The client's scores on standardized self appraisal instruments reflect improvement.
Client has increased knowledge of speech and stuttering.
Client has increased understanding of speech and stuttering.
The client has demonstrated increased use of problem-solving skills.
Client demonstrates improved attitudes, feelings, and cognitions relative to speech and stuttering.
Client demonstrates increased coping skills to negative environmental reactions.
Family and significant others have participated in the therapy process as appropriate.
The client's knowledge of self-help/support options has increased.

Societal outcomes

Societal outcomes of therapy should include a reduction in the negative impact of stuttering, allowing increased options for the client in one or more of the following areas: education, vocation, societal.

Financial outcomes

Financial outcomes of therapy should include:

A reduction in need/expense of treatment if effective intervention is provided early in childhood.
A close match between projected and actual costs of treatment.
Increased cost-effectiveness for the client when fluency services are provided by a certified speech-language pathologist who is a Specialist in Fluency Disorders rather than when services are provided by a non-certified speech-language pathologist or a speech-language pathologist who is not a specialist in fluency disorders.
Reduction in duration and cost of therapy when attendance is consistent.
More cost-effective therapy outcome if significant others are involved in therapy.
Diminished cost-effectiveness and increased duration of therapy may occur when concomitant conditions exist.
Diminished cost-effectiveness and increased duration of therapy may occur if extraordinary disrupting circumstances exist.

MCO and other funding sources

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:

Treatment is cost effective in terms of:
- therapy outcomes
- frequency of treatment
- duration of treatment
- fees for treatment
- structure of treatment
- utilization of resources
Fees for treatment are reasonable
Fees for treatment are justified.
Long term expenses are reduced.
Services and results are reported using uniform terminology and standard codes.
Continued treatment is justified based upon functional progress.
The client reports satisfaction (e.g., services provided, functional changes, etc.).

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 whereby these outcomes can be measured. Determining means for measuring these outcomes may prove more daunting than developing the outcome statements.