1. A Framework for Discussing Outcome Measures in Stuttering J. Scott Yaruss, Ph.D., CCC-SLP University of Pittsburgh ASHA SID4 Leadership Conference Tucson, AZ — May 1, 1997

2. Purpose To present a conceptual framework for viewing treatment outcomes in terms of the “ABC” reactions to stuttering Affective Behavioral Cognitive

3. What should we measure?

4. Roadblocks Diversity of Treatments Scope of Treatments Definitions of Success Diversity of Clients Inconsistencies in Terminology

5. The International Classification of Impairments, Disabilities, and Handicaps (ICIDH) Designed to describe the consequences of health-related problems (i.e., the individual’s experience of diseases or disorders) World Health Organization (1980) Original Framework

6. Definitions of I, D, and H (WHO, 1980) Impairment: “any loss or abnormality of psychological, physiological, or anatomical structure or function.” Disability: “any restriction of lack of ability to perform an activity in the [normal] manner” Handicap: “a disadvantage for an individual, resulting from an I or D, that limits...the fulfill- ment of a role that is normal...for that individual.”

7. ICIDH Example A skeletal impairment may be difficulty moving the arm (§71.0: Mechanical impairment of... upper arm). –The etiology of the impairment may be a broken arm, MS, or another problem—this does not matter for the ICIDH This impairment may lead to disabilities, such as difficulty writing (§28), dressing (§35) or reaching (§53) The impairment and disability may then lead to handicaps, such as disadvantages related to physical independence (§2), mobility (§3), or occupation (§4, e.g., curtailed occupation in fields that require arm mobility).

8. I, D, and H for Stuttering (after Yaruss, in prep) Impairment: Disruption in the functioning of the speech mechanism characterized by interruption in the forward flow of speech (i.e, stuttering) Disability: Limitations in an individual’s ability to communicate with others or to engage in social or work-related activities Handicap: Disadvantages experienced by an individual that limit the individual’s ability to fulfill social, occupational, or economic roles

9. ICIDH and Stuttering Example The basic stuttering impairment is the production of disfluencies (§37.0: Impairment of speech fluency) –There are many theories re the etiology of this impairment, it seems safe to say that it involves multiple factors This impairment may lead to disabilities, such as difficulty talking (§21), performing at work (§18.4) or coping with situations (§14.2) The impairment and disability may lead to handicaps, such as disadvantages related to occupation (§4.2), social participation (§5.1), or economic well- being (§6.3)

10. Confusion regarding the ICIDH and Stuttering Previous definitions of I, D, and H in stuttering have equated impairment with etiology and disability with handicap, so they were not consistent with the WHO’s definitions The link between the stuttering impairment and resulting disabilities is not as direct as with many physical impairments and disabilities

11. Mediating Disability: The ABCs of Stuttering The link between I and D is mediated by the individual’s reactions to stuttering –Affective: Feelings, attitudes, emotions –Behavioral: Avoidance, tension, struggle –Cognitive: thought-processes, self-evaluation

12. A Conceptual Framework for Discussing Treatment Outcomes in Stuttering (after Yaruss, in prep)

17. Applying the Framework to Treatment Outcomes Research Helping to answering the question, What should we measure?” Two approaches to measuring treatment outcomes –Documenting that a specific treatment program accomplishes the specific goals it sets –Establishing criteria for success across the entire field and testing all programs against that criterion

18. Assessing Outcomes for Specific Treatments Every treatment program should document whether or not it achieves its goals –Describe, in detail, the nature of the program –Define success clearly –Operationalize clinical decision-making –Measure outcomes (before, during, & after treatment) –Report changes objectively (good and bad)

19. Assessing Outcomes for Specific Treatment Programs Level of measurement = level of treatment

21. Assessing Outcomes Across the Field Need to reach an agreement about appropriate level of measurement –Option #1: Restrict assessment to speech (i.e. impairment-level) measures, since stuttering is a speech event (Joy Armson will discuss this) –Option #2: Assess at several different levels Probably not etiology…too much disagreement Probably not handicap…out of our realm

22. A Proposal for Measuring the Outcome of Stuttering Treatment Three Realms of Measurement: –Impairment: speech fluency –Reactions: affective, behavioral, cognitive responses –Disability: ability to perform tasks (functional outcome) Rationale –Allows different opinions about what is most important (including features that are “under the surface”) –Recognizes that the most successful client is one who can function better in society (regardless of type of tx)

23. Tests and Measures of Impairment and Reactions Impairment: speech-level measures –Frequency, Duration, Type, Severity of Disfluency –Speech Naturalness, Speaking Rate Reactions: ABCs –Affective (e.g., Speech attitudes  S-24, ICA, Self-Ratings) –Behavioral (e.g., Avoidance of speaking situations, tension, struggle  Speech Situation Checklist, ICA, SESAS) –Cognitive (e.g., Locus of control, thoughts about speaking abilities  ICA, LCB/LOC, SESAS)

24. Assessing Functional Outcomes Assesses ability to communicate in real-life setting One model is the ASHA FACS –Scores communication independence in several realms social communication; communication of basic needs; reading, writing, and number concepts; daily planning –Uses 7-point scale (does...does with assistance...does not) In stuttering, we could assess clients’ ability to: –verbally communicate (disability in talking) –function at work (disability in work performance) –function in social situations (situation coping disability)

25. Ability to Verbally Communicate How often does the client do the following? (1=never, 3=sometimes, 5=frequently) –Have difficulty communicating verbal messages –Have difficulty initiating, maintaining, or completing conversations (e.g., because of listener’s reactions) –Have difficulty speaking under time pressures –Substitute less appropriate words to avoid stuttering –Avoid introducing self, answering questions, or making socially appropriate talk when meeting a new person –Not respond when s/he knows the answer to a question

26. Ability to Communicate at Work How often does the client have difficulty with the following? (1=never, 5=frequently) –Answering the phone / Making phone calls at work –Interacting with superiors, co-workers, employees –Interacting with customers, clients, colleagues –Participating in meetings (contributing ideas, etc.) –Gathering information (i.e., asking questions) –Giving oral presentations –Performing other work-related tasks (completing training, making favorable impression, etc.)

27. Ability to Communicate in Speaking Situations How often does the client have difficulty with the following? (1=never, 5=frequently) –Using the telephone (for a variety of purposes) –Interacting with family/friends/children –Interacting with strangers/groups/authority figures –Making speeches to small/large groups –Asking for directions, Asking for advice –Ordering food at a restaurant/drive-thru

28. Functional Outcomes vs. Other Outcomes Measures Some functional outcomes questions seem similar to those in existing scales of speech attitudes, behaviors, situations, etc. –The focus is not on how clients feel or think about stuttering, but on their ability to do tasks ICA: feelings and beliefs about speaking and situations SESAS: thoughts (confidence) about speaking situations Functional assessment: ability to do certain life tasks –Instruments should be used together in evaluation

29. Summary