Journal of Fluency Disorders 35 (2010) 190–202

Assessing quality of life in stuttering treatment outcomes research

J. Scott Yaruss ∗
Communication Science and Disorders, University of Pittsburgh, 4033 Forbes Tower, Pittsburgh, PA 15260, United States
Received 13 January 2010; received in revised form 29 May 2010; accepted 30 May 2010

Abstract
Stuttering can affect many aspects of a person’s life. People who stutter report that they experience negative reactions to stuttering,
difficulty communicating in key situations, diminished satisfaction with life, and a reduced ability to achieve their goals in life.
Unfortunately, most treatment outcomes studies have focused on changes in the observable characteristics of stuttering, with
significantly fewer studies examining the broader consequences of stuttering. This paper proposes that evaluation of stuttering
treatment outcomes can be enhanced through assessment of impact of stuttering on a speaker’s quality of life. A means of assessing
quality of life is described, based on the Overall Assessment of the Speaker’s Experience of Stuttering (OASES; Yaruss & Quesal,
2006, 2008). The OASES is a multi-dimensional assessment instrument built upon the World Health Organization’s International
Classification of Functioning, Disability, and Health (ICF; WHO, 2001; see also Yaruss & Quesal, 2004). One section of the OASES
is designed to assess specific aspects of quality of life in individuals who stutter. Preliminary data from two ongoing studies involving
the OASES are briefly summarized in order to demonstrate: (a) that individuals who stutter do report an adverse impact on their
quality of life as a result of stuttering and (b) that quality of life can improve following treatment for stuttering. It is recommended
that future stuttering treatment outcomes studies directly examine the broader consequence of stuttering by focusing, in part, on
quality of life.

Educational objectives: After reading this article, the participant will be able to: (1) describe some of the adverse consequences of
stuttering reported by individuals who stutter; (2) define quality of life as it relates to the study of the stuttering disorder; (3) explain
the value of assessing quality of life in stuttering treatment outcomes research.
© 2010 Elsevier Inc. All rights reserved.

Keywords: Stuttering; Quality of life; OASES; Treatment outcomes; Treatment efficacy; International Classification of Functioning, Disability, and
Health

1. The broad-based nature of stuttering

Stuttering is a communication disorder that can affect many aspects of a person’s life. To an observer, the most
obvious aspect of the disorder is the production of certain types of disruptions in the forward flow of speech, such as
repetitions of parts of words, prolongations, and blocks (see Bloodstein & Bernstein Ratner, 2008). To the speaker,
however, stuttering can involve far more than just observable speech disfluencies (Cooper, 1993; Manning, 1999,
2010; Mulcahy, Hennessey, Beilby, & Byrnes, 2008; Murphy, 1999; Shapiro, 1999; Sheehan, 1970; Starkweather &
Givens-Ackerman, 1997; Van Riper, 1982). Personal reports, biographical accounts, and empirical research all confirm

∗ Tel.: +1 412 383 6538; fax: +1 412 383 6791.

E-mail address: jsyaruss@pitt.edu.

0094-730X/$ – see front matter © 2010 Elsevier Inc. All rights reserved.
doi:10.1016/j.jfludis.2010.05.010
 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202 191

that people who stutter may experience feelings of shame, embarrassment, and anxiety; difficulty communicating; and
a sense of dissatisfaction with life due to stuttering (e.g., Ahlbach & Benson, 1994; Bobrick, 1995; Carlisle, 1985;
Corcoran & Stewart, 1998; Craig, Blumgart, & Tran, 2009; Hood, 1998; Jezer, 2003; Johnson, 1930; Klompas & Ross,
2004; Manning, 1999; Manning, 2010; Shapiro, 1999; St.Louis, 2001; Yaruss & Quesal, 2006; Yaruss et al., 2002).
This distinction between surface behaviors seen by an observer and life experiences of those who live with the
disorder is reflected, in part, in the many definitions and theories about stuttering that have been offered over the years
(e.g., Bloodstein, 1993). Some definitions and theories have focused on trying to explain the surface speech disruptions,
while others have also addressed the consequences of stuttering and the speakers’ experiences (Bloodstein & Bernstein
Ratner, 2008). The nature of the definitions offered by different authorities are no doubt linked to the theoretical
orientations to the disorder. Still, the sheer number of definitions highlights the various and varied experiences that are
associated with the difficulty in producing fluent speech.
The varied nature of stuttering is also reflected in the wide range of available treatment approaches. Many treat-
ments focus primarily on reducing or eliminating stuttering behaviors (e.g., Ingham, 1984; Neilson & Andrews, 1993;
Onslow, Costa, Andrews, & Harrison, 1996; Ryan, 1979; Webster, 1980). Other approaches seek to reduce the negative
consequences of the disorder in addition to reducing observable speech disruptions (e.g., Breitenfeldt & Lorenz, 2000;
Manning, 2010; Shapiro, 1999; Van Riper, 1973). The wide range of options, and the varied success of these approaches
with different individuals (Bloodstein & Bernstein Ratner, 2008), speaks to the complexity of the disorder—and to the
importance of considering each speaker’s unique experiences with stuttering and with life in general.

1.1. The evaluation of stuttering in treatment outcomes research

Examination of the stuttering treatment outcomes literature reveals that most studies to date have focused primarily
or exclusively on changes in the observable characteristics of stuttering, with relatively little consideration given to
the broader consequences of the disorder experienced by the speaker (see Andrews, Guitar, & Howie, 1980; Bothe,
Davidow, Bramlett, & Ingham, 2006; Cordes, 1998; Prins & Ingham, 2009; Thomas & Howell, 2001). This emphasis
on reduced disfluency is understandable, for the observable speech disruption is a central feature of the disorder, and
people who seek therapy certainly want to reduce the amount of stuttering they exhibit. Surface stuttering behavior is
also the most salient aspect of the disorder for listeners, and, as such, it is the easiest aspect to measure (though the
reliability of stuttering frequency counts has long been questioned; Cordes, 1994; Cordes & Ingham, 1994). Still, when
people who stutter are asked about the nature of their “complaint” (Baer, 1988, 1990), the negative consequences of
stuttering are also cited as key features of their daily experience (Yaruss et al., 2002). Thus, treatment research should
also examine these aspects of the disorder.
The lack of focus on the consequences of stuttering in treatment outcomes research is not due to a lack of mea-
surement tools, for there are many instruments that evaluate the broader experience of stuttering (e.g., Ammons &
Johnson, 1944; Andrews & Cutler, 1974; Brutten & Shoemaker, 1974; Crowe, Di Lollo, & Crowe, 2000; Erickson,
1969, Lanyon, 1967; Ornstein & Manning, 1985; Riley, Riley, & Maguire, 2004; Watson, 1988; Woolf, 1967;
Wright & Ayre, 2000; Yaruss & Quesal, 2006). For example, the original “S-Scale” (Erickson, 1969) and the S-
24 adaptation (Andrews & Cutler, 1974), as well as Watson’s (1988) Inventory of Communication Attitudes (ICA),
measure a speaker’s reactions to stuttering in different situations. Instruments have also examined other aspects of the
speaker’s experience of stuttering, confirming the broad variety of experiences and challenges reported by people who
stutter.
In spite of the long-standing availability of such tools, however, these types of instruments have not been widely
used in treatment research. Certainly, there are exceptions, as some studies have included measures of how affective and
cognitive reactions to stuttering may change during the course of treatment (e.g., Blomgren, Roy, Callister, & Merrill,
2005; Boberg & Kully, 1994; Montgomery, 2006). Even so, the primary focus of those studies was still an examination
of the measurable changes in observable speech fluency. Even those studies that did consider the speakers’ reactions
to stuttering did not directly examine the functional difficulties the speakers may have had when communicating in
daily situations or the overall consequences of stuttering for their lives as a whole. Furthermore, as Ulliana and Ingham
(1984) pointed out, results from some scales that examine a speaker’s attitudes toward stuttering in different situations
may simply reflect the speaker’s degree of fluency in those situations. Thus, even taking these exceptions in account,
it seems clear that the study of stuttering treatment outcomes has focused primarily on measuring changes in the
observable characteristics of stuttering.
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Another explanation for the lack of emphasis on the broader experience of stuttering in treatment outcomes research
may be the assumption that, as stuttering behaviors diminish, the consequences of those behaviors also diminish. This
is true, to some extent. Nevertheless, just as the occasional blemish may continue to be embarrassing to a person who
has largely overcome a history of acne, even occasional stuttering may be the source of negative reactions for a person
who has largely overcome a history of more severe stuttering. The negative consequences of stuttering can linger, long
after the observable features have diminished (Ahlbach & Benson, 1994; Hood, 1998; Manning, 1999; Manning, 2010;
Shapiro, 1999; St.Louis, 2001).
In sum, much of the existing stuttering treatment literature is relatively limited in scope, even though the speaker’s
experience of stuttering involves more than the surface behaviors that have been the focus of most studies. As
such, the field faces a significant challenge: if clinicians and researchers wish to know whether a treatment yields
an improvement in a speaker’s life experience (and not just in speech fluency), then direct assessment of that life
experience is needed. The purpose of this paper is to explore one aspect of the broader assessment of stuttering,
specifically, changes that may occur in a speaker’s overall quality of life.

2. Quality of life

Quality of life has been chosen for this endeavor, in part, because it is a multi-dimensional construct that is broad
enough to account for many aspects of the speaker’s experience of the stuttering disorder. Moreover, the specific concept
of quality of life forms the core of the scope of practice of speech-language pathology, at least in the United States.
According to the American Speech-Language-Hearing Association (ASHA), “Speech-language pathologists work to
improve quality of life by reducing impairments of body functions and structures, activity limitations, participation
restrictions, and barriers created by contextual factors” (ASHA, 2007). Thus, addressing quality of life is not only
important for understanding the experience of people with communication disorders, it is the essence of the speech-
language pathologist’s job.
Numerous definitions of quality of life have been offered (e.g., Bergner, 1989; Schipper, Clinch, & Powell, 1990;
Testa & Simonson, 1996; see also Franic & Bothe, 2008). Most definitions highlight constructs related to a person’s
satisfaction with life or overall sense of well-being. Aspects of a person’s life that are commonly included in con-
ceptualizations of quality of life include factors such as physical functioning, emotional and mental health, social
interaction, vocational experiences, ability to fulfill expected roles, and ability to achieve goals (e.g., Schipper et al.,
1996; Schumaker, Anderson, & Czajkowski, 1990). The World Health Organization (WHO) defines quality of life as:
“individuals’ perceptions of their position in life in the context of the culture and value systems in which they live and
in relation to their goals, expectations, standards and concerns” (WHOQOL, 1998a). The WHO intends that quality
of life should be viewed within a “cultural, social and environmental context” and not “equated simply with the terms
‘health status,’ ‘life style,’ ‘life satisfaction,’ ‘mental state,’ or ‘well-being”’ (WHOQOL, 1998b, p. 11). Assessment of
quality of life should account for several related dimensions of people’s overall life experiences. Thus, quality of life
can be viewed as a “macro-variable” covering many aspects of an individual’s experience. This makes it particularly
relevant for studying stuttering, which can affect many aspects of life.
While quality of life is specifically defined as a broad-based measure, it can still focus on particular aspects of
an individual’s life. Thus, while some measures of quality of life examine a person’s general experience of life (e.g.,
the Medical Outcomes Study Short-Form 36-Item Health Survey, or SF-36; Ware et al., 1993), others examine more
specific aspects of health status (see Bergner, 1989). Measures can be further tailored to assess the effects of a given
ailment or condition, and many disorder-specific quality of life tools have been developed (Salek, 1999). Valuable
information about quality of life can also be gleaned from qualitative research methods such as interviewing and
phenomenological analysis (Creswell, 2009; Gottschalk, 1995; Siedman, 1991; Smith, 2004), particularly in a field
such as speech-language pathology, in which social interaction and communication form the core of clinical practice
(e.g., Tetnowski & Damico, 2001; Tetnowski & Franklin, 2003).
Using a standard quality of life instrument across disorders allows comparison of the relative effects of various
conditions on people’s lives. For a disorder such as stuttering, which can have far-reaching effects on a person’s life,
a standard quality of life instrument (e.g., Craig et al., 2009) or a tool that is specifically focused on health-related
aspects of life (Franic & Bothe, 2008) allows consideration of how stuttering compares to other disorders. Still, people
who stutter do not routinely report difficulties in many of the domains commonly assessed in standard quality of life
instruments, such as pain, general health, vitality, or sexual function. They do report difficulties with social interaction,
 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202 193

ability to pursue educational or vocational opportunities, and other aspects of daily experience that are not directly
related to health (Gabel, Blood, Tellis, & Althouse, 2004; Hood, 1998; Klein & Hood, 2004; McClure, 2009; St.Louis,
2001; Yaruss et al., 2002; cf. Franic & Bothe, 2008). Using a disorder-specific instrument for examining quality of life in
people who stutter allows a more detailed assessment of constructs related to communication than can be accomplished
with general quality of life instruments.

3. Stuttering and the international classification of functioning, disability, and health

The individualized nature of stuttering has made the assessment of treatment outcomes a difficult task, for it is not
always clear which aspects of a given individual’s experience should be measured (aside from the surface features of
stuttering). One way of making assessment more manageable is to base measurements on a comprehensive framework
that describes the entirety of the stuttering disorder. Fortunately, such a framework exists, for the challenges of con-
ducting broad-based assessment of people’s experiences are not unique to stuttering. The International Classification
of Functioning, Disability, and Health (ICF; WHO, 2001) classifies all of human health experience in terms of two
major categories: (a) body function and structure (i.e., all the major structures and functions of the human body) and
(b) activities and participation (i.e., all the activities that one may wish to perform in his or her attempts to participate
in life). Difficulties that arise with body function or structure are called impairments, or “the expression of a health
condition” (WHO, 2001, p. 13), while difficulties that arise with activities and participation are called activity limita-
tions or participation restrictions, indicating that the person is not able to perform daily activities or participate in life
in the desired manner.
The ICF accounts for the different experiences that people may have due to their impairment by incorporating
personal and environmental contextual factors that describe how an individual person may react to his or her health
condition, as well as how people in the speaker’s environment react. These reactions may be beneficial (e.g., positive
attitudes or helpful services within the environment) or detrimental (e.g., negative attitudes or barriers to a person’s
ability to succeed in life). Together, these components describe a broad range of health experiences. (Not coincidentally,
they also define the remainder of the terms in the previously quoted passage from the ASHA Scope of Practice for
Speech-Language Pathologists; ASHA, 2007.)
In previous work, the author (Yaruss, 1998, 2001, 2007; Yaruss & Quesal, 2004, 2006) has suggested that the ICF
provides an ideal framework for evaluating the experiences of people who stutter, for it describes all of the relevant
components typically included in the speaker’s “complaints” about stuttering. Specifically, for people who stutter:

• Impairment in body function refers to the difficulty with speech production, including the observable disfluencies
that may be perceived by the speaker or listeners as stuttered (e.g., Boehmler, 1958; Conture, 2001; Johnson, Darley,
& Spriestersbach, 1963; Johnson, 1961; Riley, 2009; Williams & Kent, 1958; Yairi & Ambrose, 1992; Yaruss, 1997).
• Impairment in body structure refers to the underlying neuro-anatomical differences that have been documented in
adults who stutter (e.g., Beal, Gracco, Lafaille, & DeNil, 2007; Chang, Erickson, Ambrose, Hasegawa-Johnson, &
Ludlow, 2008; Foundas, Bollich, Corey, Hurley, & Heilman, 2001; Foundas et al., 2003; Sommer, Koch, Paulus,
Weiller, & Büchel, 2002).
• Personal contextual factors refer to the speakers’ affective, behavioral, and cognitive reactions, such as embarrass-
ment, shame, tension and struggle, and low self-confidence (e.g., Cooper, 1993; Manning, 1999, 2010; Murphy,
1999; Shapiro, 1999; Sheehan, 1970; Starkweather & Givens-Ackerman, 1997; Van Riper, 1982; Watson, 1988).
• Environmental contextual factors refer to reactions by people in the speakers’ environment, including stereotypes
(Craig, Tran, & Craig, 2003; Doody, Kalinowski, Armson, & Stuart, 1993; Mackinnon, Hall, & MacIntyre, 2007;
White & Collins, 1984), myths about the nature and treatment of stuttering (Crowe & Walton, 1981; Klassen, 2001;
Woods & Williams, 1976), and hindrances to a speaker’s ability to succeed due to discrimination or role entrapment
(Gabel et al., 2004; Klein & Hood, 2004).
• Activity limitation and participation restriction refer to the difficulty speakers may have performing daily activities
involving communication, including interacting with others, talking on the telephone, and speaking at work or in
other situations (Brutten & Shoemaker, 1974; Erickson, 1969; Ornstein & Manning, 1985; Woolf, 1967). These
components of the ICF also encompass the difficulty speakers may have in doing what they want to do in their
lives, including pursuing life goals, taking part in religious or civic events, or engaging in employment or education
(e.g., Wright & Ayre, 2000; Yaruss & Quesal, 2006; Yaruss et al., 2002). While there are few empirical studies
194 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202

documenting these aspects of the disorder, ample evidence is found in personal reports and life stories of people
who stutter (Ahlbach & Benson, 1994; Bobrick, 1995; Carlisle, 1985; Hood, 1998; Jezer, 2003; Johnson, 1930;
Manning, 1999; Shapiro, 1999; St.Louis, 2001).

Although it may not be possible to develop a complete list of all of the adverse effects that every person who
stutters might experience in their lives, the ICF provides a framework that can account for the majority of those effects.
As such, it forms a useful foundation for research that attempts to describe the broad consequences of stuttering
(e.g., reduced quality of life) that may be experienced by people who stutter and may, ultimately, be addressed in
treatment.

3.1. Using the ICF to evaluate stuttering

Using the ICF as a foundation, Yaruss and Quesal (2006, 2008); see also Yaruss (2001) developed a measurement
instrument that was designed to assess the entirety of the stuttering disorder from the perspective of the individual who
stutters. The Overall Assessment of the Speaker’s Experience of Stuttering (OASES), contains four sections, each of
which can be linked to a component of the ICF. Section 1 gathers general information about the speaker’s perception
of his or her stuttering impairment. Section 2 assesses the affective, behavioral, and cognitive reactions the speaker
may have to stuttering. Section 3 captures the difficulty the speaker may have with functional communication in key
situations, thereby addressing activity limitation, blended with environmental contextual factors. Section 4 examines
the negative effect stuttering may have on the speaker’s satisfaction with life and ability to participate in key social and
familial roles. Thus, this section addresses participation restriction, again blended with environmental context. It is
this last component of the OASES that is explored further in this paper, for these participation difficulties are viewed
in the OASES in terms of the impact of the stuttering on a speaker’s overall quality of life.
The practice of equating participation with quality of life was also seen in the WHO’s earlier framework, the
International Classification of Impairments, Disabilities, and Handicaps (ICIDH; WHO, 1980, 1993). In the ICIDH,
“handicap,” or “a disadvantage for a given individual, resulting from an impairment or a disability, that limits or
prevents the fulfillment of a role that is normal (depending on age, sex, and social and cultural factors) for that
individual” (WHO, 1980, p. 29) was often aligned with quality of life (Frattali, 1998). This handicap component of
the ICIDH was later merged with the disabilities component in the development of the ICF to arrive at the broader
activities and participation. The “heritage” of the concept of quality of life in the ICIDH and ICF is relevant because
the OASES was originally based on the ICIDH classification system, then updated to account for concepts in the ICF
(Yaruss, 2001).

4. Quality of life and stuttering

As noted above, quality of life has not been routinely assessed in treatment outcomes research, though a compelling
case can be made for its inclusion in a comprehensive test battery. Some authors have discussed quality of life as it
relates to stuttering (e.g., Franic & Bothe, 2008; Craig et al., 2009; Klompas & Ross, 2004), but at the time of this
writing, the OASES is the only published instrument that explicitly examines how quality of life might be affected by
stuttering. One of the goals of this paper is to present data demonstrating the impact of stuttering on quality of life
as measured by the OASES. Before these data are presented, however, the specific aspects of quality of life that are
evaluated in the OASES are discussed in greater detail.

5. Quality of life in the OASES

This section contains 25 items in 5 subsections examining a speaker’s life experience. Each item is scored on a
5-point scale, with higher values indicating greater negative impact. Specific aspects of quality of life assessed in the
OASES include:

• The degree to which a person’s overall “quality of life” is affected by stuttering. For these questions, the term “quality
of life” is presented without specific definition, as in the WHOQOL (WHOQOL, 1998b) and other instruments.
 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202 195

• The degree to which stuttering interferes with satisfaction with communication. Satisfaction is frequently addressed
in quality of life instruments. In the OASES, questions examine satisfaction with communication, and, specifically,
situations where people who stutter may have difficulty communicating.
• The degree to which stuttering interferes with relationships. Difficulty with relationships is not commonly assessed
in other quality of life tools. It is targeted in the OASES because of the central role communication plays in forming
relationships with others.
• The degree to which stuttering interferes with employment. Employment is examined in the OASES because it is
another aspect of life that can be adversely affected by difficulty with communication (e.g., Gabel et al., 2004; Klein
& Hood, 2004).
• The degree to which stuttering interferes with other aspects of life experience. Several key aspects of life experience
were selected based on their appearance in other quality of life instruments (Bergner, 1989; Schipper et al., 1990;
Schumaker et al., 1990; Testa & Simonson, 1996; WHOQOL, 1995) or because they are mentioned as being affected
by stuttering in the personal stories and narratives of individuals who stutter (Ahlbach & Benson, 1994; Corcoran
& Stewart, 1998; Hood, 1998; Manning, 1999, 2010; Shapiro, 1999; St.Louis, 2001).

It is worth noting that other instruments examine some of these constructs (e.g., general health status) more specif-
ically than the OASES, which emphasizes stuttering and the effects of impaired communication. (Thus, the OASES
has been viewed as a measure of “overall” rather than “health-related” quality of life; Franic & Bothe, 2008.) Still, the
OASES assesses a broader range of constructs than is typically seen in a general quality of life instruments (including
personal reactions and activity limitations). Of course, use of the OASES does not preclude the examination of health
or well-being via other tools (e.g., Craig et al., 2009), and it is strongly recommended that the OASES be used as part
of a comprehensive battery of tests which assess the entire experience of stuttering (Yaruss & Quesal, 2006). Thus,
quality of life is not viewed as an end to itself, but rather, as one aspect of a person’s life that can be affected by
stuttering.

6. Validating quality of life for stuttering

Development of the quality of life section of the OASES involved several steps. First, relevant constructs were
identified through a review of existing quality of life tools (Bergner, 1989; Schipper et al., 1990; Schumaker et al.,
1990; Testa & Simonson, 1996; WHOQOL, 1995; also Frattali, 1998; Kaplan et al., 1993; McEwan, 1993). Next,
items were proposed and tested via focus groups of people who stutter and expert reviewers. Pilot studies assessed
participant’s responses to test items, and test questions were evaluated based on detailed item analyses from a series of
trials involving more than 300 people who stutter (Yaruss & Quesal, 2006, 2008). Data analysis involved evaluation of
central tendencies and distributions, consideration of floor and ceiling effects, and comparisons of focus group results
with data-based analyses. In the end, 25 items were selected. Analyses revealed item means ranging from 1.7 to 3.1,
with modes ranging from 1 to 4. Individual responses for all items ranged from 1 to 5, confirming that all items were
relevant for at least some individuals who stutter.
The average score for the quality of life section of the OASES for the 173 participants who participated in the final
validation trial was 2.38 (SD = 0.88; range = 1.04–4.92). A more detailed analysis of each of the 5 subsections reveals
the following:

• Quality of life: An average of 12% of respondents indicated that their quality of life was “not at all” affected by
stuttering, their reactions to stuttering, or other people’s reactions. The remainder of participants reported a negative
effect, with an average of 28% indicating that their quality of life was affected “a lot” or “completely.”
• Satisfaction with communication: An average of 9% of respondents stated that stuttering did not interfere with their
communication satisfaction in general, at work, or in social situations. In contrast, 38% reported that stuttering
did not interfere with communication satisfaction at home, showing that home interactions were less likely to be
affected.
• Relationships: An average of 36% of respondents indicated that stuttering did not interfere with their relationships.
Only 14% indicated that stuttering affected relationships “a lot” or “completely.”
196 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202

• Employment: An average of 35% of respondents indicated no negative impact from stuttering on employment, though
21% reported that stuttering interferes with their job “a lot” or “completely.”
• Other aspects: An average of 36% of respondents indicated no negative impact, while 22% indicated that stuttering
interfered “a lot” or “completely.”

Overall, results show that the majority of respondents in the OASES validation sample did experience reduced
quality of life in various aspects of their lives due to stuttering, though some respondents were minimally affected. The
average score was 2.4 (SD = 0.41), suggesting a moderate negative impact on quality of life as a result of stuttering.
One possible explanation for some respondents’ experience of minimal negative impact on quality of life may
have been participation in stuttering self-help (Yaruss et al., 2007). As many as 90% of respondents were familiar
with stuttering self-help, though the degree of their participation varied. It is also possible that some respondents
experienced minimal impact due to prior participation in treatment. Still, demographic data revealed that while nearly
all had received treatment at some time in their lives, only 25% had done so within 2 years prior to the study. For those
who had received treatment, a wide variety of approaches were reported, including techniques aimed at improving
fluency, techniques aimed at modifying the severity of stuttering, techniques aimed at minimizing negative attitudes,
medications, and altered auditory feedback. The effects of these treatments on quality of life are not known. Thus,
another important step in examining quality of life for individuals who stutter is to consider the impact of stuttering
before and after speakers participate in treatment. Such research is currently ongoing; the next section presents a brief
overview of some preliminary results from this effort.

6.1. Quality of life before and after treatment

In an ongoing case review, adults who stutter complete the OASES before and after receiving treatment at the
American Institute for Stuttering (AIS; Montgomery, 2006) or the Successful Stuttering Management Program
(SSMP; Breitenfeldt & Lorenz, 2000). It is worth noting that these two approaches are quite different in scope and
focus. They were selected specifically because of their differing characteristics in order to evaluate the ability of the
OASES to detect changes people may experience in treatment. Because this paper is focused on quality of life, results
from Sections 1–3 of the OASES are not detailed and differences between the approaches are not examined. Instead,
combined participant data are evaluated to assess the impact of stuttering on participants’ quality of life prior to and
immediately following treatment.
Prior to treatment, the 44 participants examined to date exhibited an average impact score on the quality of life subsec-
tion of the OASES of 2.74 (SD = 0.80, range = 1.33–4.28). This is slightly higher than that seen in the 173 individuals in
the OASES validation study, again suggesting that the original participants may have reduced impact compared to others.
Following treatment, the mean quality of life score for these 44 participants dropped to 1.51 (SD = 0.58,
range = 1.00–3.44). This difference was significant (paired t-test; t(43) = 9.93, p < .0001), suggesting that the par-
ticipants experienced a reduction in the adverse impact of stuttering. Again, the purpose of this ongoing study is not
to evaluate the efficacy of the AIS and SSMP treatment programs, but rather to determine if the OASES is sensitive to
changes that might occur in treatment. Preliminary results suggest that this is the case, and confirm that a reduction in
the impact of stuttering on quality of life is a measurable outcome of treatment.

7. Future directions

7.1. Ongoing validation

As has been noted elsewhere (Franic & Bothe, 2008), much work remains to be done to evaluate the validity of the
OASES as a whole, and of the quality of life component in particular. Some of this work is ongoing, including further
examination of the factor structure of the OASES subsections based on larger samples of respondents, evaluation of the
relationship between OASES results and participant demographics (Kim & Yaruss, 2008), comparison of scores from
the OASES with those of other instruments that assess various aspects of stuttering (e.g., the S-24), and comparison
of OASES to parallel forms designed to assess the impact of “speaking ability” on the lives on individuals who do not
stutter (e.g., Mulcahy et al., 2008; Yaruss et al., 2006). Although much remains to be done, preliminary results, such
as those presented above, confirm the value of assessing quality of life in individuals who stutter.
 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202 197

7.2. Quality of life in children and adolescents who stutter

Quality of life for people who stutter is not a construct that applies only to adults. In recent years, there has
been a growing recognition of the impact of stuttering on children. Where it was once believed that young children
were unaware of stuttering (Bloodstein, 1960; Bluemel, 1932), recent studies have revealed that school-age children
(Brutten & Vanryckeghem, 2006; DeNil & Brutten, 1991; Dell, 1993; Murphy, 1989; Murphy, Yaruss, & Quesal,
2007a; Vanryckeghem & Brutten, 1996, 1997; Vanryckeghem, Hylebos, Brutten, & Peleman, 2001), and even some
preschoolers (Ambrose & Yairi, 1994; Boey et al., 2009; Ezrati-Vinacour, Platzky, & Yairi, 2001; Langevin, Packman,
& Onslow, 2009; Logan & Yaruss, 1999; Vanryckeghem, Brutten, & Hernandez, 2005), can be aware of, and react
negatively to, their speaking difficulties. Research has also shown that bullying and teasing, and difficulties with other
aspects of social interaction, can affect the daily experience of school-age children and adolescents who stutter (Blood
& Blood, 2004; Davis, Howell, & Cook, 2002; Hugh-Jones & Smith, 1999; Langevin, 1997, 2000; Langevin, Bortnick,
Hammer, & Wiebe, 1998; Murphy & Quesal, 2002; Murphy, Yaruss, & Quesal, 2007b). Thus, information about how
stuttering affects quality of life in children and adolescents is needed.
As of this writing, two new versions of the OASES, one for elementary school-age children (ages 7–12; Yaruss,
Coleman, & Quesal, 2010) and one for teenagers (ages 13–17; Yaruss, Quesal, & Coleman, 2010), are undergoing
validation. These versions are shorter than the adult version, and the language and concepts are simplified. Like the
adult OASES, these tools include a section on quality of life, though the items are focused on life experiences in these
age groups. For example, rather than including items about employment, these versions include items about schooling
and education. Both tests still examine the effect of stuttering on life and the degree to which stuttering interferes with
the speaker’s ability to accomplish life goals. Future studies will continue to evaluate the reliability and validity of
these tools and assess whether they are sensitive to changes that these age groups experience following treatment. Such
research will provide much-needed information about the potential impact of stuttering on the overall quality of life
of younger individuals who stutter.

8. Conclusion

Stuttering can affect far more than just a person’s ability to produce words with appropriate rate, rhythm, and
smoothness. Because of the broad impact the disorder can have on a person’s life, the evaluation of treatment outcomes
should include more than just an assessment of changes in fluency. While a wide variety of experiences and character-
istics of stuttering can (and should) be examined, quality of life is a particularly important construct to consider, for it
is a multi-dimensional construct that encompasses many aspects of a speaker’s life that may be affected by stuttering.
Preliminary results from research examining quality of life in people who stutter help to document the consequences
of the disorder and confirm that the assessment of quality of life can form a meaningful component of the stuttering
treatment outcomes research.

Acknowledgements

The author is grateful Catherine Montgomery and colleagues of the American Institute for Stuttering and Kim
Krieger and colleagues of the Successful Stuttering Management Program for ongoing collaboration on the validation
of the OASES.

CONTINUING EDUCATION

Assessing quality of life in stuttering treatment outcomes research

Questions

1. According to the article, stuttering is a disorder that:

a. Involves disruptions in the forward flow of speech.
b. Can affect many aspects of a person’s life.
198 J.S. Yaruss / Journal of Fluency Disorders 35 (2010) 190–202

c. Should be viewed only in terms of the observable speech disruptions.

d. Cannot be assessed because it is too complicated.
e. Both (a) and (b).
2. The majority of treatment outcomes research in stuttering conducted to date has examined:
a. Changes in the speaker’s quality of life.
b. Changes in the observable characteristics of stuttering.
c. Changes in how listeners perceive stuttering.
d. Changes in how an individual feels about his speech.
e. Changes in the speaker’s ability to perform daily activities.
3. Quality of life can be defined as:
a. “How a person feels about their life.”
b. “A person’s sense of well-being, satisfaction with life, and overall health.”
c. “individuals’ perceptions of their position in life in the context of the culture and value systems in which they
live and in relation to their goals, expectations, standards and concerns”.
d. “A person’s mental functioning and mental state.”
e. None of the above.
4. According to the article, quality of life is a worthwhile concept to assess in stuttering treatment outcomes research
because:
a. Quality of life is a multi-dimensional construct that encompasses many aspects of a speaker’s life that may be
affected by stuttering.
b. Quality of life represents how a person feels about his or her life.
c. Quality of life represents a person’s sense of well-being and satisfaction with life.
d. Quality of life replaces the concept of speech fluency.
e. Quality of life is the same no matter what the nature of the disorder or condition an individual is experiencing.
5. According to the article, the Overall Assessment of the Speaker’s Experience of Stuttering:

a. Is the only measure that should be used in an evaluation.

b. Is the only measure that should be used in treatment outcomes research.
c. Represents the only way to evaluate quality of life in stuttering.
d. Represents a meaningful assessment of quality of life that can be used in conjunction with other measures to provide
an overall indication of how stuttering affects an individual’s life.
e. Both (a) and (b).

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Yaruss, J. S., Coleman, C., & Quesal, R. W. (2010). OASES: Overall Assessment of the Speaker’s Experience of Stuttering: Ages 7–12. Bloomington,
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J. Scott Yaruss, PhD, CCC-SLP, ASHA Fellow, is Associate Professor and Director of MA/MS Programs in Speech-Language Pathology in the
Department of Communication Science and Disorders at the University of Pittsburgh. He is co-author of the Overall Assessment of the Speaker’s
Experience of Stuttering.