diagnosing and treating children who stutter

8/14/2019 Diagnosing and Treating Children Who Stutter

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Considering Multiple

Outcomes in StutteringTreatment

Oxford Dysfluency Conference July 2, 2005

J. Scott Yaruss, Ph.D., CCC-SLP, F-ASHA

Board-Recognized Specialist and Mentor in FluencyDisorders

Associate Professor, University of PittsburghClinical Research Consultant, Children’s Hospital of

Pittsburgh

Co-Director, Stuttering Center of WesternPennsylvania

Professional Relations Chair, Board of Directors, NationalStuttering Association

Steering Committee, ASHA Special Interest Division forFluency Disorders



y

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Purpose

To describe a method for examining

multiple outcomes of stuttering

treatment from the perspective of

the individual who stutters



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WHY would we

want toconsider

multipleoutcomes?



4

Most ImportantFact #1

S t u t t e

r i n g

i s m o r e

t h a n j

u s t

S t u t t e

r i n g !



5

WHAT specific

outcomesshould wemeasure?



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Body Function and Structure: describes themajor physiological and psychologicalfunctions of the body

Functioning and Disability: describes themajor areas of people’s daily lives

Impairments in Body Function and Structurecan lead to limitations in a person’s ability to

perform activities or restrictions in the person’sability to participate in life

PresumedEtiology

Activi

PaImpairment inBody Function

Functioning,

Disability and Health

(World Health Organization, ICF 2001)



The Role of Reactions

In stuttering, the link betweenimpairment and the resulting negativeconsequences is largely mediated by thespeaker’s reactions to stuttering Affective: Feelings, attitudes, emotions

Behavioral: Actions (Avoidance, tension, struggle)

Cognitive: Thought-processes, self-evaluation

Finally, the reactions of those in the speaker’senvironment also play an important role for

many

Presumed

Etiology

AImpairment in

Body FunctionABC

Reactions



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Considering the EntireStuttering Disorder

Model for representing stuttering based on the ICF

(adapted from Yaruss, 1998; Yaruss & Quesal, 2004)

ActivityLimitation

ParticipationRestriction

Personal Factors /Reactions

EnvironmentalFactors

Impairmentin BodyFunction

(ObservableStutteringBehaviors)

PresumedEtiology

Affective

Cognitive

Behavioral



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Activity / Participation(individual’s performance and

capacity in various life areas)

d330 speaking

d350 conversation

d355 discussion

d7200 forming relationships

d7203 interacting according

to social rules

d810s education

d840s work

d850s employment

d900s community, social,

and civic life

Environmental Factors(external influences on

functioning and disability)

e300s support and

relationships

e355 professionals (e.g.,

SLPs, teachers)

e400s attitudes of society

and individuals

e530 communication

services

e555 support organizations

e585 educational services

Body Function(physiological & psychological

functions of the body)

b3300 fluency of speech

b3301 rhythm of speech

b3302 speed of speech

---------------------------------------

b152 emotional functions

(extreme anxiety or

emotional concern)

---------------------------------------Body Structure

(anatomical parts of the body)

s110 structure of brain

Presumed

Etiology(causal factors not

classified in the ICF)

Personal Factors(background of a person’s life, such

as coping style, experiences, etc.)

Affectivefeelings, emotional

reactions, etc.

Behavioraltension, struggle,

avoidance, etc.

Cognitivethought process,

self-esteem, etc.

The “Full” ICF Model forStuttering



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HOW can we possibly

hope tomeasure all

that stuff?

M i I i t



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Most common measures include frequency of disfluencies, type of disfluency, and severity

Stuttering behaviors are highly variable People may not stutter at all in some

situations, so we must collect multiple speechsamples and be aware of the variability of the behavior

What you see is not always what you get

As stuttering progresses, the observablecharacteristics tell us less and less about the

speaker’s experience of the disorder

Measuring Impairment(Observable Stuttering

Behaviors)

M o s t

I m p

o r t

a n t F a c

t

# 2

Impairment

in BodyFunction

i



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Numerous tools have been presented overthe years aimed at examining the speaker’s“Communication Attitudes” S-Scale (Erikson, 1969) S-24 (Andrews & Cutler, 1974)

ICA (Watson, 1988) PSI (Woolf, 1967)

SSS (Lanyon, 1969) SSC (Brutten & Shoemaker, 1974) SPP (Silverman, 1980) SESAS (Ornstein & Manning, 1985)

With a few notable exceptions (e.g., Boberg & Kully, 1994), theseinstruments have not been widely used in treatmentoutcomes research (or, it seems, in daily clinical practice)

MeasuringReactions

Personal Factors /

Reactions

Affective

Cognitive

Behavioral

t



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Fewer instruments have focused on the role of the environment or the negative impact of stuttering on the speaker’s life WASSP (Wright & Ayer, 2000) Crowe’s Protocols (et al., 2000)

(I personally would like to see greater use of these instruments!)

Many attitudes scales examine environmentalfactors by considering different situations This has led to criticism (Ulliana & Ingham, 1984) that

“attitudes” inventories simply reflect the speaker’sfluency in different speaking situations

easur ng e est othe Stuttering

DisorderEnvironmental

Factors



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So remind me why we

should careabout all these other

factors?

R #1 C t f



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The speaker’s experiences affect progress in therapy , as well asthe ability to communicate, and overall quality of life

Personal Factors /

Reactions

Environmental

Factors

Impairment

in Body

Function

(Observable

Stuttering

Behaviors)

Presumed

Etiology

Affective

Cognitive

Behavioral

Reason #1: Components of the Stuttering Disorder

INTERACT

R #2 Th P l



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As Manning and others have highlighted, the personalidentity (or construct ) of being a person who stutters canpersist, even after the speaker has tools for “managing”speech

“Changes under the surface and over time”

Personal constructs can change; to support this changerequires specific effort in therapy

If we are going to address such topics in therapy, we mustmeasure the outcomes of such efforts

Reason #2: The PersonalIdentify of Stuttering

PERSISTS



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The principles of evidence-based practicerequire that clinicians and researchers collectdata about the treatment they provide

Every issue or characteristic that is addressed intreatment must be evaluated If treatment addresses anything other than fluency,

broad-based measurement is required

Some might argue that the only characteristicthat should be addressed in stuttering therapyis the stuttering behavior, but…

eason :Comprehensive

Measurement



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eason : eop e oStutter Do More Than

Just Stutter The primary complaint (Baer, 1990) is not just the stuttering behavior—it is thestuttering disorder

Personal histories (Hood, 1998; St. Louis, 2001) & books by people who stutter (e.g., Bobrick, 1995

Jezer, 2003), highlight the broad impact of thedisorder

Census of NSA Members (McClure & Yaruss, 2003) Stuttering interferes with school/work (79%) and

social/family (64%) interactions

Many feel embarrassed about stuttering (70%)and avoid speaking situations (82%)

This is true even after treatment!



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Contrary to the claims of some…

Many people who stutter continue to dealwith stuttering in some fashion after

treatment Studies of “successful” treatment and

“recovery” reveal “strategies” people use toavoid stuttering

If the stuttering behavior remains at all,

then the consequences of the stutteringbehavior remain Documenting and evaluating the true outcome of

treatment for the stuttering behavior requiresthat we document those consequences

Reason #5:Treatment Is Not Perfect



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HOW can wemeasuremultiple

outcomes?

U i th ICF d l



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Using the ICF model as aFramework

The ICF model provides a guide about what aspects of the entire stuttering disorder should be measured

ActivityLimitation

ParticipationRestriction

Personal Factors /Reactions

Environmental

Factors

Impairment

in BodyFunction

(ObservableStutteringBehaviors)

PresumedEtiology

Affective

Cognitive

Behavioral

E l ti th E ti



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Evaluating the Entire Disorder

Since stuttering is a broad-basedcommunication disorder, we mustconsider several factors in treatmentoutcomes research

Impairment: Observable characteristics of speech

Reactions: Affective, Behavioral, Cognitive

Environmental Reactions: Reactions of people in thespeaker’s environment; situational difficulties

Activity Limitation / Participation Restriction: Overallimpact of stuttering on speaker’s life



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A comprehensive instrument designed toevaluate the experience of the stuttering

disorder from the perspective of the speaker Developed through an iterative process of

data collection and analysis with more than toensure a high degree of reliability and validity

Yields an “impact” score indicating theoverall severity of the stuttering disorder

Overall Assessment of theSpeaker’s Experience of

Stuttering (OASES) (Yaruss &

Quesal, submitted)



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Structure of the OASES

100 items in 4 sections, each on a 5-point scale

Sections are closely related to the ICF Model

Section I: General Information about Stuttering

Speaker’s perception of the Impairment and general knowledge andperception of the stuttering disorder

Section II: Affective, Behavioral, Cognitive Reactions Section III: Communication in Daily Situations

Activity Limitation / Environmental Factors

Section IV: Impact of Stuttering on Quality of Life

Participation Restriction / Environmental Factors



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So what canweDO

with all these

data?

s ng t e to



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s ng t e tosupport

Daily Clinical Practice To support the understanding of stuttering

Because the OASES is based on the experiences of hundredsof people who stutter, clinicians can use the OASES to betterunderstand the nature of the stuttering disorder

As a treatment planning & evaluation tool…

Clinicians can use the OASES to ensure that they work towardmeaningful changes in relevant aspects of the speaker’sexperience of stuttering



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supportTreatment Outcomes

Research

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20

30

40

50

60

70

80

90

100

T o t a l O A

S E S S c o r e

Part I: General Information

Part II: Reactions to Stuttering

Part III: Functional Communication

Part IV: Quality of Life

From Yaruss & Quesal (2004)

Assessment of the Child’s



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A new instrument for assessing the impact of stuttering on the school-age child’s life

Content is based on the ICF and topics identifiedthrough research on the OASES

Items are focused on child’s experiences and perspective(school and social settings, etc.)

Wording is simplified and tested as appropriate for children

between the ages of 7 and 18

Assessment of the Child’sExperience of Stuttering

(ACES)(Yaruss, Coleman, & Quesal, in prep)



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Conclusion

Not only it is possible to consider multipleoutcomes of stuttering treatment, it isnecessary, based on the tenets of EBP

By basing our measurement upon a widely

used framework for understanding humanhealth experience, we ensure comprehensive documentation of treatment outcomes

Without such information, it is impossible to judge the success of treatment from the perspective of the individual who stutters

diagnosing and treating children who stutter

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