Sunteți pe pagina 1din 12

Journal of Fluency Disorders 35 (2010) 161–172

Fluency disorders and life quality: Subjective wellbeing vs.


health-related quality of life
Robert A. Cummins ∗
School of Psychology, Deakin University, 221 Burwood Hwy, Melbourne, Victoria 3125, Australia
Received 7 December 2009; received in revised form 21 April 2010; accepted 25 May 2010

Abstract
It seems intuitive that people with a fluency disorder, such as stuttering, must experience a low life quality. Yet this is not
necessarily so. Whether measured life quality is lower depends on several factors, the most important of these being methodological.
This is because the disciplines of medicine and the social sciences utilize quite different technologies to measure the construct.
Within medicine, health-related quality of life (HRQOL) is measured through constellations of perceived symptoms. Thus, if
the symptoms chosen to represent HRQOL match the pathological characteristics of the fluency disorder, the relationship is
self-fulfilling. Psychology, on the other hand, uses subjective wellbeing to represent life quality. Here, the relationship between
symptoms and perceived life quality is much less certain. It is proposed that this partial disconnection is due to the presence of a
homeostatic system which manages subjective wellbeing in an attempt to keep it positive. The paper that follows examines the
construct of life quality from both disciplinary perspectives, and then reports on the findings from each discipline in relation to
fluency disorders. It is concluded there is no necessary link between fluency disorders and life quality provided subjective wellbeing
is used as the indicator variable.

Educational objectives: : The reader will be able to describe: (i) contemporary issues in quality of life measurement; (ii) the
relationship between fluency disorders and life quality; (iii) the conceptual limitations of health-related quality of life.
© 2010 Elsevier Inc. All rights reserved.

Keywords: Fluency disorders; Subjective wellbeing; Health-related quality of life; Homeostasis; Life quality; Causal and indicator variables

1. Introduction

Do people with verbal fluency disorders experience lower life quality because of their condition? It would seem
to an observer that this must be so. The condition clearly creates difficulties in communication and therefore must be
a burden. Curiously, however, the empirical literature is not clear-cut. The purpose of this chapter is to explore the
reasons for this inconsistency and to suggest a way forward that might shed more determined light on the issue. First,
however, I will begin with a description of the life quality construct and its measurement. Confusion at this basic level
is to blame for the generally poor state of research on life quality in this and other applied areas.

∗ Tel.: +61 3 9244 6845.


E-mail address: robert.cummins@deakin.edu.au.

0094-730X/$ – see front matter © 2010 Elsevier Inc. All rights reserved.
doi:10.1016/j.jfludis.2010.05.009
162 R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172

The most important source of confusion arises from discipline-specific notions about how to represent the quality of
life (QOL) construct. In particular, a schism has developed between medicine and the social sciences. Within the social
sciences life quality is represented by the global construct of Subjective Wellbeing, which is essentially positive mood.
Within medicine, on the other hand, Health-related quality of life (HRQOL) is defined as having multiple domains,
most of which are negative constructs of health.
These are very different conceptions as to what constitutes life quality. Thus, understanding each perspective is
essential to evaluate QOL studies pertaining to fluency disorders. So the first two sections of this paper will examine
these two disciplinary views of life quality. Following this, the empirical literature pertaining to this area will be
examined.

2. Subjective wellbeing

The term Subjective Wellbeing (SWB) has been adopted by the scientific community to avoid the word ‘happiness’.
Like so many English words, the word is bothersome in having more than one meaning. To most people happiness
means a fleeting emotion attached to a nice experience. Like a cup of tea on a hot day, or resting after a job well done.
But SWB research concerns something different.
The form of happiness that accompanies SWB is a mood, rather than an emotion. Whereas emotions are fleeting,
moods are more stable. The mood of happiness represents a deep, positive feeling state which is constantly present.
Sometimes we lose contact with it due to the dominating influence of acute emotions, but it still remains in the
background. It pervades out thinking, making us normally see the positive in life, most particularly in relation to
self-evaluations, and probably represents the main motivation for living.
The reason that SWB has become such a popular area of study is that it exhibits some very interesting characteristics.
Perhaps the most important of these is that people’s feelings of positivity are remarkably stable, consistent with the
idea that such positivity constitutes a genetically determined individual difference. This stability first appears in the
temperament of infants as predictable levels of positive affect/extraversion (Braungart, Plomin, DeFries, & Fulker,
1992) and, in adults, as a ‘set-point’ for levels of happiness (Lykken & Tellegen, 1996). The maintenance of this stable
and positive mood may also be assisted by an active homeostatic process.

3. Subjective wellbeing homeostasis

The theory of Subjective Wellbeing Homeostasis proposes that, in a manner analogous to the homeostatic main-
tenance of body temperature, SWB is actively controlled and maintained (Cummins, 1995, 2010). This homeostatic
process attempts to maintain a normal sense of wellbeing, which is manifest as a generalized, rather abstract and posi-
tive view of the self. This self-view is exemplified by responses to the classic question “How satisfied are you with your
life as a whole?” Given the extraordinary generality of this question, the response that people give does not represent
a cognitive evaluation of the components of their life. Rather it reflects a deep and stable positive mood state that we
first called Core Affect (Davern, Cummins, & Stokes, 2007) and now refer to as Homeostatically Protected Mood
(HPMood; Cummins, 2010). This mood is dominated by a sense of contentment, flavoured with a touch of happiness
and excitement. It is this general and abstract state of wellbeing which, it is proposed, the homeostatic system seeks to
defend. As one consequence, measures of SWB have the following characteristics:

1. SWB values are normally very predictable. On a scale where zero represents complete dissatisfaction with life and
100 represents complete satisfaction, in Western nations the population mean is predictably about 75 points. In
other words, on average, people feel that their general satisfaction with life is about three-quarters of its maximum
extent (Cummins, 1995, 1999).
2. We suggest that this predictability is genetically assisted. It has been proposed (Headey & Wearing, 1989) that
each person has a ‘set-point’ for their normal levels of SWB, and that these set-points are under genetic control
(Braungart et al., 1992; Lykken & Tellegen, 1996). This likely explains why we find these set-points to lie within
the positive range of 60–90 points (Cummins, Gullone, & Lau, 2002).

While this generalized sense of wellbeing is held positive with remarkable tenacity, it is not immutable. A sufficiently
adverse environment can defeat homeostasis and, when this occurs, the level of subjective wellbeing falls below its
R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172 163

homeostatic range. For example, people who experience strong, chronic pain from arthritis or the stress of caring
for a severely disabled family member at home commonly have low levels of SWB (Cummins, 2001). However, for
people with a normally functioning homeostatic system, their SWB levels will show little relationship to their chronic
circumstances of living. So, how does homeostasis manage to defend SWB against the unusually good and the unusually
bad experiences of life? The answer we propose is that there are two kinds of defensive ‘buffers’.

3.1. Homeostatic buffers

Interaction with the environment constantly threatens to move wellbeing up or down in sympathy with momentary
positive and negative experience. And on some occasions this does occur. However, most people are adept at avoiding
strong challenges through the maintenance of established life routines that make their daily experiences predictable
and manageable. Under such ordinary life conditions, the level of SWB for each person normally varies by about 10–12
percentage points (Cummins, 2010).
Homeostasis works hardest at the edges of this range to prevent more drastic mood changes in the level of SWB
which, of course, also occur from time to time. Strong and unexpected positive or negative experience will shift the
sense of personal wellbeing to abnormally higher or lower values, usually for a brief period, until adaptation occurs.
Most importantly, if the negative experience is sufficiently strong and sustained, homeostasis will lack the power to
restore equilibrium and SWB will remain below its set-point range. Such homeostatic defeat is marked by a sustained
loss of positive mood and a high risk of depression. So the first line of defence for homeostasis is to avoid, or at least
rapidly attenuate, negative environmental interactions. This is the role of the external buffers.

3.2. External buffers

The two most important resources for the defence of SWB are close relationships and money. Of these two, the
most powerful buffer is a relationship with another human being that involves mutual sharing of intimacies and
support (Cummins et al., 2007—Report 16.1). Almost universally, the research literature attests to the power of such
relationships to moderate the influence of potential stressors on SWB (Henderson, 1977; Sarason, Sarason, & Pierce,
1990).
Money is also a very important external buffer, but there are misconceptions as to what money can and cannot do
in relation to SWB. For example, it cannot shift the set-point to create a perpetually happier person. As previously
stated, set-points for SWB are proposed to be under genetic control (Braungart et al., 1992; Lykken & Tellegen, 1996),
so in this sense money cannot buy happiness. No matter how rich someone is, their average level of SWB cannot be
sustained higher than the upper portion of their set-point range. People adapt readily to luxurious living standards, so
genetics trumps wealth after a certain level of income has been achieved.
The true power of wealth is to protect wellbeing through its use as a highly flexible resource (Cummins, 2000)
that allows people to defend themselves against the negative potential inherent within their environment. For example,
wealthy people may pay others to perform tasks they do not wish to do themselves. Poor people, who lack such
resources, must fend for themselves to a much greater extent. Poor people, therefore, have a level of SWB that is far
more at the mercy of their environment.
Each day, however, people will experience threats to homeostasis that neither relationships nor wealth can prevent.
These may be the unexpected acute challenges that arise, such as from interpersonal unpleasantness or poor personal
judgment. They may also arise from chronic circumstances of living, such as occasioned by a fluency disorder. In
such circumstances, the immediate effect of the challenging experience may be to cause SWB to fall below its set-
point-range, but this fall will normally be transitory. Provided that the person is sufficiently resilient, this momentary
homeostatic failure causes cognitive restructuring to take place, in which the event is re-interpreted to the benefit of
the person affected. These processes play a large role in protecting SWB through the internal buffering system.

3.3. Internal buffers

When we fail to control our external environment and SWB is threatened, our internal buffers come into play. These
comprise protective cognitive devices that are designed to minimize the impact of personal failure on our positive
feelings about our self. There are many such devices, collectively called Secondary Control techniques (Rothbaum,
164 R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172

Weisz, & Snyder, 1982) and a detailed discussion of these systems in relation to SWB is provided in Cummins and
Nistico (2002) and Cummins et al. (2002). They have the role of protecting our SWB against the conscious reality of
life. They do this by altering the way we see ourselves in relation to some challenging agent, such that the negative
potential in the challenge is deflected away from the core view of self. So the role of these buffers is to minimize the
impact of personal failure. The forms of thinking that can achieve this purpose are highly varied. For example, one
can find meaning in the event (‘God is testing me’), fail to take responsibility for the failure (‘it was not my fault’) or
regard the failure as unimportant.
In summary, it is proposed that the combined external and internal buffers ensure that our wellbeing is robustly
defended. There is, therefore, considerable stability in the SWB of populations and, as has been stated, the mean for
Western societies like Australia and the United States are consistently at about 75 points on a 0–100 scale (see Cummins
et al., 2009). Moreover, the failure of homeostasis and consequent reduction of positive mood is strongly associated
with the pathological state we call depression (Cummins, 2010).
So, how does this view from the Social sciences relate to the medical conception of life quality?

4. Health-related quality of life

Health-related quality of life (HRQOL) is defined by the Food and Drug Administration (2006) as: “A multi-domain
concept that represents the patient’s overall perception of the impact of an illness and its treatment. A HRQOL measure
captures, at a minimum, physical, psychological (including emotional and cognitive), and social functioning.” (p. 31).
The content of HRQOL instruments is generally true to this definition. This is because both the definition and the
scale developers have been guided by a common source of opinion provided by the ‘consensus’ statement, resulting
from a 1992 meeting of an International Board of Advisors (Berzon, Hays, & Shumaker, 1993). The deliberations from
this meeting form a special issue of Quality of Life Research (Volume 2) and include the recommendation that:
“.four fundamental dimensions are essential to any HRQOL measure. These include physical, men-
tal/psychological, and social health, as well as global perceptions of function and well-being.” (p. 367).
The authors also recommend a list of ‘additional HRQOL domains considered important but not always necessary’
and place responsibility for their inclusion or omission on the individual investigator. This list is as follows:
“pain, energy/vitality, sleep, appetite, and symptoms relevant to the intervention and to the natural history of the
disease or condition.” (p. 367).
It is notable that these four fundamental dimensions bear a very strong resemblance to the 1947 World Health
Organisation definition of health as a ‘state of complete physical, emotional and social wellbeing’ WHO (1947). The
original term ‘emotional’ has become ‘mental/psychological’ and the ‘state of complete’ has become operationalized
as ‘global perceptions of function and well-being’. Thus, the guidelines for the construction of HRQOL scales have
been modelled on the 1947 definition of health.
Defining HRQOL in this way has led to major problems of scale construction and the generation of data that are
most uncertain in their interpretation (see Cummins, Lau, & Stokes, 2004; Leplege & Hunt, 1997; Michalos, 2004).
Some of the contentious issues are as follows:

• It has been pointed out by Leplege and Hunt (1997) that even if the WHO’s definition of health is accepted as a
hypothetical construct comprising physical, psychological, and social elements, this does not imply that quality of
life is also composed of these dimensions. They comment “– judgments about physical capacities and abilities have
only relative objectivity. Thus, the observation that person A cannot walk as far as person B is merely a statement of
fact, but if we extrapolate from this that person A has a poorer quality of life – this is a reinforcement of stereotypes
that underlie discriminatory practices.” (p. 48).

This issue of conceptual breadth is crucial if HRQOL scales are going to be interpreted as measuring life quality.
A recent reviewer (Kane, 2003) states ‘HRQOL narrows the QOL concept to aspects of life affected by a person’s
health condition and its treatment.’ (p. 30). In confirmation of this view, other reviewers (Nicholson & Anderson, 2003)
describe generic HRQOL instruments as providing a ‘summary health profile’ while ‘specialist instruments’ focus on
specific problems associated with a disease or area of functioning’ (p. 253). It is evident from such perspectives that the
R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172 165

operationalization of HRQOL has resulted in far more limited measures than the intention of the ‘consensus’ (Berzon
et al., 1993) to represent life quality.
Finally on this point, the constructs of ‘physical and social functioning’ were probably selected due to their con-
nection with health and the important human need to feel connected to other people. Again, however, this choice
disenfranchises other important areas which have just as much relevance for the human sense of wellbeing. These
include being productive, having high self-esteem, feeling in control, and having a sense of optimism.

• The ‘consensus’ statement adopted by test developers combines global perceptions of wellbeing with more specific
constructs (e.g. physical functioning). This has caused the creation of scales that combine the scores from global
items with the scores from their components (see e.g. Incontinence Quality of Life Instrument, Patrick et al., 1999).
This creates the problem that the same source of variance is being used twice.
• Measures of ‘emotional functioning’ should reference to the circumplex model which, for well over a decade, has
dominated the operationalization of affect (see e.g. Yik, Russell, & Barrett, 1999). This model depicts the affects on
the circumference of a circle, divided into quadrants by the axes of pleasant–unpleasant and activated–deactivated.
Modified programs of structural modelling are used to position affects within each of the quadrants. Thus, any general
measure of emotion would be expected to include representative affects from each of the circumplex quadrants. But
the HRQOL scales evidence no such understanding. For example, ‘anxiety’ and ‘stress’, which are affects from the
activated-unpleasant quadrant, are commonly selected to represent ‘emotional functioning’. They are inadequate to
perform this role.
• A crucial distinction in QOL measurement is that between objective and subjective variables. The objective circum-
stances of living are tangible. An objective variable, such as a fluency disorder, can be simultaneously observed and
measured by a number of people, usually as estimates of frequencies or quantities. Subjective variables are based
on self-reports, where people rate their levels of feelings or assessments using a response scale. In quality of life
research this often involves levels of satisfaction. Such measures cannot be verified by any other person because
they are private to the individual making the assessment.
• These two different forms of measurement (e.g. physical health and satisfaction with health) do not form reliable
linear relationships with one another due to SWB homeostasis (see above). Thus objective measures of health
cannot be reliably used to predict subjective health states, and neither can objective and subjective variables be
validly combined into scales of measurement. Unfortunately, this is common practice for HRQOL scales (e.g.
WHOQOL-100: WHOQOL Group, 1995). For a critique of the WHOQOL-100 see Hagerty et al. (2001). Not only
are such variable combinations psychometrically invalid but they also confuse outcome with causation.

This latter problem has been well articulated by Fayers, Groenvold, Hand, and Bjordal (1998), who distinguish
between indicator and causal variables. Indicator variables, such as the perception of health quality, constitute a
measured end-state. Causal variables are the patient perceived symptoms (e.g. fluency impairment, anxiety, etc.) that
cause the end-state to change. Thus, if symptoms are used as indicator variables they become synonymous with
perceived health or even subjective wellbeing. This is analogous to the use of wealth to define QOL by economists,
and is self-fulfilling. In order to escape such circularity, symptoms and their psychological consequences must be
separately measured. Yet this principle is violated by all HRQOL scales. For example, the SF-36 (McHorney, Ware,
& Raczek, 1993) combines limitations in ability to walk 100 m (causal), with a rating of current health (indicator).

• Finally there is the problem, recognised by the Food and Drug Administration (2006), of combining medical
symptoms to form scales of measurement. In their traditional context, symptoms are diagnostic of specific disorders.
An increased production of lymphocytes is diagnostic of infection not of diabetes. Moreover, the level of lymphocytes
is normally unrelated to the control of glucose metabolism, so it is inconceivable that someone would produce a
scale of ‘blood quality’ that combined the average levels of lymphocytes and insulin into a single ‘index’. Clearly,
each objective measure has its own diagnostic utility, and this utility is obliterated by their combination.

This logic also holds for the broad picture of objective life quality. Consider, for example, the person who is extremely
wealthy, yet in poor health and chronic pain, who has many excellent friends, yet lives in prison. The combination of
such variables cannot be interpreted.
166 R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172

In addition to the above problems, there are further concerns regarding the interpretation of HRQOL measurement.
These are as follows.

4.1. Generic vs. specific scales and the problem of sensitivity

There are two kinds of HRQOL scales, generic and specific. The most widely used generic scale is the SF-
36 (McHorney et al., 1993), which is designed to measure HRQOL for diverse medical groups. A disadvantage
of all generic scales is that their broad cover makes them insensitive to detect change in specific medical condi-
tions. For example, an intervention may decrease stuttering, yet have little impact as judged through the SF-36 scale
average.
This problem has also been well articulated by Food and Drug Administration (2006). They point out that since
the HRQOL instruments contain separate components, the interpretation of a composite score in relation to outcome
is a fraught process. “Though one reason for use of a composite is to reduce the multiplicity problems associated with
multiple separate endpoints, composites can do so only if it is agreed that treatment impact on each of the endpoints
is of value and if the endpoints move in the same direction.”
They also conclude that establishing benefit through the composite may well be a very insensitive approach because
“a treatment may relieve certain symptoms or improve functioning but this benefit may not be detected using a composite
score that includes other endpoints (e.g. psychological or emotional wellbeing) that fail to improve with the treatment.
In any such composite, it is critical to ensure that patients enrolled in a clinical study are impaired in all domains (e.g.
psychological or emotional wellbeing) because they cannot improve in domains if they are not impaired in whatever
concept the domain measures.” (p. 28).
Because of this insensitivity, condition-specific HRQOL scales have been developed, which concentrate on symp-
toms relating to the body part or system in question. While such scales are certainly more sensitive to change, their
narrow focus takes them even further from being valid measures of life quality. They are, in fact, no more than
constellations of medical symptoms that define a specific pathological condition.

4.2. What is the ‘quality’ in HRQOL?

Finally, and perhaps most important, is the question of whether HRQOL scales are capable of describing a ‘High
Quality of Life’. Within the social sciences, QOL ‘excellence’ corresponds to a normally positive state of mind and
satisfaction with life in general, as discussed above. Within HRQOL scales, on the other hand, ‘excellent’ corresponds
to the absence of patient-reported symptoms of pathology.
‘Quality’ is usually defined along the lines of ‘degree of excellence’ (Oxford Handy Dictionary, 1991) ‘being of
high quality’ (Merriam-Webster Online Dictionary, 2009) or ‘of a high standard’ (Cambridge Dictionaries Online,
2009). Implicit, is that when the term ‘quality’ is applied to some entity it implies ‘better than average’ or ‘better than
normal’. Thus, a ‘quality life’ is a better than average life. So the basic terminology of HRQOL is inconsistent with
common usage. It defines the normal state, which is the absence of perceived medical symptoms, as excellent quality.
This is not a trivial issue of semantics. It is entirely misleading as evidenced from most journal articles on this topic
which use HRQOL and ‘Quality of Life’ as synonyms.
In fact, HRQOL does not even equate to ‘excellent health’. A definition of excellent physical and mental health
would invoke at least a high level of physical fitness, perceived good health, an absence of pathology existing below
conscious awareness (e.g. high blood pressure), and a positive attitude to life. Clearly, therefore, excellent HRQOL
is quite different from excellent physical and mental health. Excellent HRQOL is, simply, the absence of medical
symptoms as perceived by the patient.

5. Fluency disorders and wellbeing

Arguably, one of the most demanding and difficult aspects of life is effective communication between people who are
unfamiliar with one another (Mulcahy, Hennessey, Beilby, & Byrnes, 2008). These interactions are not just exchanges
about the topic under discussion but also a means for people to get to know one another through the subtly of inferred
meaning and mutual sharing of values. Obviously, this process is disrupted when one of the pair has expressive language
impairment. Moreover, the communication process may cause frustration if people react negatively to the nature of the
R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172 167

speech (Klompas & Ross, 2004) and thereby attend more to the manner of speaking than the message it is intended to
carry (O’Keefe, 1996).
Depending on the severity of the problem and the character of the person, this has the potential to exert a negative
influence on life quality through all stages of the life cycle. Most likely, this link between fluency disorders and
wellbeing starts in childhood. An important task of childhood is making meaningful relationships with other children,
and children will tend to avoid perceived deviance in others. So it is no surprise to find that children who exhibit
behavioural or physical deviance are likely to experience exclusion, even victimization, which predisposes them to the
development personality disorders (Iverach et al., 2009) and psychopathology (for reviews see Deater-Deckard, 2001;
Hawker & Boulton, 2002).
If these difficulties persist, then the social anxiety created by impaired communication may cause children to
underperform at school (Peters & Guitar, 1991) and to experience difficulty making friends in adolescence (van
Riper, 1971). In adulthood, fluency disorders may harm employment opportunities (Klein & Hood, 2004) as well as
continuing to create relational difficulties (Ross, 2001). Moreover, severe childhood language difficulties are associated
with adult differences in objective life quality. Arkkila, Rasanen, Roine, Sintonen, and Vilkman (2008) followed-up
Finnish children who had received a hospital diagnosis of Specific Language Impairment. They had normal non-verbal
intelligence but below-normal verbal intelligence at the time of diagnosis. At the age of 34 years, compared with the
general population, they were more likely to live with their parents and to have a pension. While only a few reported
having literacy problems, over 40% had difficulty in finding words and remembering instructions. Thus, remnants of
their early language impairment persisted.
Of all the fluency disorders, stuttering is the most common. It has been defined (Craig, Blumgart, & Tran, 2009) as
a disorder in the rhythm of speech, in which the individual knows what they wish to say, but at the same time is unable
to say it because of an involuntary, repetitive prolongation or cessation of sound (Andrews et al., 1983). Stuttering
includes repetitions of syllables, avoidance of words, substitutions, part-or-whole words, or phrases; prolongations of
speech; or blocking of sounds (Craig, Hancock, Chang, et al., 1996; Craig, Hancock, & Craig, 1996).
It might be expected, therefore, that stuttering would impact negatively on the QOL of children and adults. The
available literature, however, is tentative. In part this is because researchers have tended to rely on HRQOL measurement
involving scales designed for this specific condition. Unfortunately, quite apart from the conceptual issues raised above,
it appears that these scales have been seriously underdeveloped. In a review of 17 such scales, Franic and Bothe (2008)
evaluated each one in terms of their conceptual model, reliability, validity, sensitivity, interpretability (norms), burden
(respondent and administrative), depth and versatility. Of the 15 standards they established for instrument adequacy, not
one met more than eight. They conclude “Available instruments do not satisfy psychometric criteria for use in individual
or group decision making, either as measures of their originally intended constructs or as measures of health-related
quality of life. [we] suggest the need for development and validation of a stuttering-specific health-related quality of
life measure” (p. 60). As a consequence of this evaluation, studies that have used the scales evaluated by Franic and
Bothe have not been further considered here.
An additional specific HRQOL scale not reviewed by Franic and Bothe is the 15D (Sintonen, 2001), used by
Arkkila et al. (2008) to measure the effects of language impairment. Unfortunately this 15-item scale is also severely
flawed. It not only combines objective and subjective variables but also weights each score using utility or preference
weights derived from the general public. Numerous authors have argued that the differential weighting of items is
psychometrically problematic (e.g. Evans, 1991; Hagerty et al., 2001; Wooden, 2002) and, indeed, the whole validity
of utility weights has been severely questioned (Cummins, 2005). As a consequence of these factors in combination
the results from this study cannot be easily interpreted.
Generic HRQOL scales, however flawed in the terms argued above, still have the capacity to yield individual
measures of interest. For example, Craig et al. (2009) compared a group of adults who stutter with a comparison group
with no fluency disorder. Using the SF-36 they found no differences on any of the physical dimensions, but the sub-
scales of Vitality, Social function, Emotional function and Mental function were lower in the stuttering group. While
they also report a significant negative relationship between emotional health and the frequency of stuttering, this was
the only significant result at p < .03 from eight independent comparisons (one for each of the eight SF-36 domains), so a
Bonferroni correction to avoid Type-2 errors would render this result non-significant. Indeed, the authors acknowledge
this result requires replication before it can be considered reliable.
In relation to the discovered social and emotional deficit, it seems quite intuitive that adults who stutter experience
significantly higher emotional tension and anxiety in social situations (e.g. DiLollo, Manning, & Neimeyer, 2003;
168 R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172

Messenger, Onslow, Packman, & Menzies, 2004). Moreover, this form of anxiety is also found in association with the
fluency disorder aphasia.
A whole issue of the journal Aphasiology, edited by Worrall and Holland (2003), is devoted to examining the life
quality of people with this condition. This collection documents a substantial literature linking the condition with
emotional distress. Moreover, in terms of generic HRQOL measures, the WHOQOL-BREF has been used to show
lower independence and relationships in aphasic patients, compared to controls (Ross & Wertz, 2003). Thus, emotional
and social deficits also appear highly relevant to this group.

6. The mechanism of harm

While there are many facets of the harm process, the most obvious is the reduced potential for sharing supportive
communications (see Burleson, 2009 for a review) coupled with anxiety attendant to the verbal communication process.
Despite some early doubts (Craig, 1994; Menzies, Onslow, & Packman, 1999; Miller & Watson, 1992, 1994), there is a
now a general consensus that anxiety is one of the many predisposing, precipitating and persisting factors in stuttering
and other fluency disorders (Craig, 1990; Craig, Hancock, Tran, & Craig, 2003; Craig & Tran, 2006; Ezrati-Vinacour
& Levin, 2004; Mahr & Torosian, 1999). For example, prior to verbal communication, the heart rate changes in a
manner consistent with speech-related anticipatory anxiety (Alm, 2004).
While there seems no doubt this condition impacts unfavourably on people, the extent of this impact is highly
uncertain. For example, while it has been reported that people with stroke-induced aphasia show heightened levels of
emotional distress one year after their event (Hilari & Byng, 2001), other authors find quite normal levels of depression
(e.g. Cruice, Worrall, Hickson, & Muriso, 2003). One reason for this variability may be SWB Homeostasis.
Anxiety is a causal variable, not an indicator variable (Fayers et al., 1998). Causal variables are the patient symptoms
(e.g. activity limitations, stuttering, anxiety, etc.) that cause the end-state to change. Indicator variables, such as
Subjective Wellbeing, constitute the measured end-state. Moreover, because homeostasis is attempting to negate the
relationship between causal variables and SWB, as it attempts to keep SWB within its set-point-range, quite marked
changes in anxiety may be accompanied by very little change in SWB.
A demonstration of this comes from the 6th report of the Australian Unity Wellbeing Index (Cummins et al., 2003).
This survey was conducted in April 2003, a time of high tension in Australia. Just six months before, a favourite
Australian tourist destination in Bali, Indonesia had suffered a deadly terrorist attack. On the 12 October 2002, bombs
detonated in the tourist district of Kuta killed 202 people, 88 of whom were Australians. It was Australia’s first
introduction to terrorism so close to home.
The data for the 6th survey were collected shortly after the Bali attack. However, at that time, the war with Iraq was
also looming, and there was a gap of just one week between the end of data collection and the actual invasion. During
this preceding period the potential for war, and the seemingly automatic involvement of Australian troops, became
the major topic of national concern. Thus, the combined Bali aftermath and the looming war were a strong source of
anxiety for many people.
We asked the 2000 respondents “What about the general situation concerning Iraq? Does this make you feel
anxious?” If they answered ‘yes’ we asked “how strong would you rate your anxiety [from 0 to 10] about the situation
in Iraq?” A total 71.7% of respondents said they felt anxious and almost 25% of these people rated their anxiety as 9
or 10. The relationship between the strength of anxiety and SWB measured through the Personal Wellbeing Index is
shown in Table A10.1 of that report.
What these data indicate is no systematic relationship between levels of anxiety and SWB. Over the range of anxiety
strength 3–10, the mean levels of SWB vary from 73.6 to 75.2, a range of just 1.6 percentage points, and all values lie
within the normal range for group mean scores which is 73.6–76.6 points (Cummins et al., 2009).
There are several important principles to note from these results as:

1. Because anxiety is a causal variable, its levels cannot be used as measures of pathology. Whether a specific level of
anxiety causes pathology will depend on several other factors.
2. One factor is the reason for the anxiety. In the current example the anxiety is being expressed in relation to distal
matters, either terrorism or war, neither of which is actually occurring in Australia and so are not part of the personal
life-space for most people. If the anxiety was in relation to stuttering in social interaction, then its influence on
SWB would be stronger, but the same principles of uncertainty in relation to pathology would apply.
R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172 169

3. A second factor is the strength of the homeostatic system to resist change. This may involve the set-point, with
higher set-points indicating more resilience, and also the strength of the external and internal buffers to resist change.

7. Conclusions and recommendations

I have argued that there are serious problems in using HRQOL scales to assess the impact of fluency disorders.
Certainly such instruments yield important information. The medical and psychological symptoms they measure are
relevant and useful, but there are caveats. To re-cast symptoms of pathology as ‘life quality’ is to deny the nature of
the construct as a potentially positive state. To combine symptoms to form a scale obscures the importance of each
symptom, in its own right, as a measure of pathology. To combine objective and subjective symptoms into a single
metric is invalid. And finally, if important symptoms, such as pain, are to be measured, then it is surely preferable to
use one of the validated pain scales.
On a related track, it is an error to regard all psychological symptoms, such as anxiety, as indicator variables.
Most of them are just symptoms, or causal variables, which means that, of themselves, they yield little interpretable
information. For a high level executive to report high levels of stress means almost nothing. They may well be having
the time of their life, being at the centre of attention, making important decisions, in command of substantial resources,
and seeing life as a wonderfully challenging game.
The essence of effective measurement, then, is to make sure that at least one unequivocal indicator variable, such
as subjective wellbeing, is included in whatever instrument package is chosen. Then, provided norms are available, as
they are for the Personal Wellbeing Index (International Wellbeing Group, 2006), it can be determined whether the
executive is distressed, evidenced by below-normal SWB, or whether the anxiety associated with stuttering is actually
at a pathological level for the individual.
So my first recommendation is to include an unequivocal indicator measure in all studies of outcome. My second
recommendation is for the increased recognition and encouragement of alternative forms of communication. As has
been well documented (e.g. Kraaimaat, Vanryckeghem, & Van Dam-Baggen, 2002), people with fluency disorders
tend to engage in verbal interactions less frequently than other people. Thus, in these modern times, they are very likely
to engage in, and benefit from, Computer-Mediated Communication, where they can engage in expressive language
and relationship-building on a more level playing-field (see McKenna & Bargh, 2000; Sheeks & Birchmeier, 2007).
Despite early scepticism regarding the efficacy of this medium to generate meaningful and lasting relationships (Kraut
et al., 1998; Nie & Erbring, 2000 cited by McKenna, Green, & Gleason, 2002, now withdrawn from publication) more
recent research has strongly critiqued these reports (McKenna et al., 2002) and, to the contrary, demonstrated very
positive results. It seems quite possible that the judicious melding of conventional therapy and computer-assistive
technology may allow the personal challenge of fluency disorders to be effectively met, thereby enabling the attainment
of normal life quality.

Acknowledgements

This study was part funded by the Australian Unity. I thank Ann-Marie James for her assistance in the preparation
of this manuscript. I also acknowledge with gratitude the insightful comments made on drafts of this manuscript by
Alison Gluskie, Wendy Kennedy, Anna Lau, Markus Lorburgs, and Kathy Martindale.

CONTINUING EDUCATION

Fluency disorders and life quality: Subjective wellbeing vs. health-related quality of life

QUESTIONS

Multiple choice questions

1. The affective content of subjective wellbeing can be characterized as:


a. Emotional happiness
b. Emotional wellbeing
170 R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172

c. Mood happiness
d. Mental health
2. Subjective wellbeing homeostasis implies that people with fluency disorders:
a. are likely to have depression
b. are likely to have low subjective wellbeing
c. are likely to have very low subjective wellbeing
d. are likely to have normal subjective wellbeing
3. If objective and subjective symptoms are combined the result is?
a. An invalid measure of pathology
b. A valid measure of pathology
c. A comprehensive measure of pathology
d. A valid and reliable measure of pathology
4. Which of the following statements is correct?
a. The symptoms of fluency disorders are good measures of life quality
b. The symptoms of fluency disorders are causal variables
c. The symptoms of fluency disorders are indicator variables
d. The symptoms of fluency disorders are good measures of depression
5. Stuttering-specific health-related quality of life measures have been found to be:
a. Generally unacceptable instruments
b. Generally valid but not reliable
c. Generally reliable but not valid
d. Generally acceptable instruments.

References

Alm, P. A. (2004). Stuttering, emotions, and heart rate during anticipatory anxiety: A critical review. Journal of Fluency Disorders, 29, 123–133.
Andrews, G., Craig, A. R., Feyer, A. M., Hoddinott, S., Howie, P., & Neilson, M. (1983). Stuttering: A review of research findings and theories
circa 1982. Journal of Speech and Hearing Disorders, 48, 226–246.
Arkkila, E., Rasanen, P., Roine, R. P., Sintonen, H., & Vilkman, E. (2008). Specific language impairment in childhood is associated with impaired
mental and social well-being in adulthood. Logopedics Phoniatrics Vocology, 33, 179–189.
Berzon, R., Hays, R. D., & Shumaker, S. A. (1993). Preface international use, application and performance of health-related quality of life instruments.
Quality of Life Research, 2, 367–368.
Braungart, J. M., Plomin, R., DeFries, J. C., & Fulker, D. W. (1992). Genetic influence on tester-rated infant temperament as assessed by Bayley’s
infant behavior record: Nonadoptive and adoptive siblings and twins. Developmental Psychology, 28(1), 40–47.
Burleson, B. R. (2009). Understanding the outcomes of supportive communication: A dual-process approach. Journal of Social and Personal
Relationships, 26(1), 21–38.
Cambridge Dictionaries Online. (2009). Retrieved 24 November 2009 from http://dictionary.cambridge.org/.
Craig, A. R. (1990). An investigation into the relationship between anxiety and stuttering. Journal of Speech and Hearing Disorders, 55, 290–294.
Craig, A. R. (1994). Anxiety levels in persons who stutter: Comments on the research of Miller and Watson (1992). Journal of Speech and Hearing
Research, 37, 90–95.
Craig, A. R., Blumgart, E., & Tran, Y. (2009). The impact of stuttering on the quality of life in adults who stutter. Journal of Fluency Disorders, 34,
61–71.
Craig, A. R., Hancock, K., Chang, E., McCready, C., Shepley, A., & McCaul, A. (1996). A controlled clinical trial for stuttering in persons aged 9
to 14 years. Journal of Speech and Hearing Research, 39, 808–826.
Craig, A. R., Hancock, K., & Craig, M. (1996). The lifestyle appraisal questionnaire: A comprehensive assessment of health and stress. Psychology
and Health, 11, 331–343.
Craig, A. R., Hancock, K., Tran, Y., & Craig, M. (2003). Anxiety levels in people who stutter: A randomized population study. Journal of Speech,
Language, and Hearing Research, 46, 1197–1206.
Craig, A. R., & Tran, Y. (2006). Chronic and social anxiety in people who stutter. Advances in Psychiatric Treatment, 12, 63–68.
Cruice, M., Worrall, L., Hickson, L., & Muriso, R. (2003). Finding a focus for quality of life with aphasia: Social and emotional health and
psychological well-being. Aphasiology, 17, 333–353.
Cummins, R. A. (1995). On the trail of the gold standard for life satisfaction. Social Indicators Research, 35, 179–200.
Cummins, R. A. (1999). A psychometric evaluation of the comprehensive Quality of Life Scale. In L. L. Yuan, B. Y. Yuen, & C. Low (Eds.), Urban
Quality of Life: Critical issues and options (5th ed., pp. 32–46). Singapore: National University of Singapore.
Cummins, R. A. (2000). Personal income and subjective well-being: A review. Journal of Happiness Studies, 1, 133–158.
Cummins, R. A. (2001). The subjective well-being of people caring for a severely disabled family member at home: A review. Journal of Intellectual
and Developmental Disability, 26, 83–100.
R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172 171

Cummins, R. A. (2005). Measuring health and subjective wellbeing: Vale, quality adjusted life years. In L. Manderson (Ed.), Rethinking wellbeing
(pp. 69–90). Perth: Australia Research Institute, Curtin University of Technology.
Cummins, R. A. (2010). Subjective wellbeing, homeostatically protected mood and depression: A synthesis. Journal of Happiness Studies, 11, 1–17.
Cummins, R. A., Eckersley, R., Lo, S. K., Okerstrom, E., Hunter, B., & Davern, M. (2003). Australian unity wellbeing index: Report 6.0. The
wellbeing of Australians – The impact of the Iraq situation. Retrieved 24 November 2009 from http://www.deakin.edu.au/research/acqol/index
wellbeing/index.htm
Cummins, R. A., Gullone, E., & Lau, A. L. D. (2002). A model of subjective well being homeostasis: The role of personality. In E. Gullone, & R.
A. Cummins (Eds.), The universality of subjective wellbeing indicators: Social indicators research series (pp. 7–46). Dordrecht: Kluwer.
Cummins, R. A., Lau, A. L. D., & Stokes, M. (2004). HRQOL and subjective wellbeing: noncomplementary forms of outcome measurement. Expert
Reviews in Pharmacoeconomics Outcomes Research, 4, 413–420.
Cummins, R. A., & Nistico, H. (2002). Maintaining life satisfaction: The role of positive cognitive bias. Journal of Happiness Studies, 3, 37–69.
Cummins, R. A., Walter, J., & Woerner, J. (2007). Australian unity wellbeing index: Report 16.1. The wellbeing of Australians – Groups with the high-
est and lowest wellbeing in Australia. Retrieved 24 November 2009 from http://www.deakin.edu.au/research/acqol/index wellbeing/index.htm
Cummins, R. A., Woerner, J., Gibson, A., Weinberg, M., Collard, J., & Chester, M. (2009). Australian unity wellbeing index: Report 21.0.
The wellbeing of Australians – Gambling, chocolate and Swine Flu. Retrieved 24 November 2009 from http://www.deakin.edu.au/research/
acqol/index wellbeing/index.htm
Davern, M., Cummins, R. A., & Stokes, M. (2007). Subjective wellbeing as an affective/cognitive construct. Journal of Happiness Studies, 8,
429–449.
Deater-Deckard, K. (2001). Annotation: Recent research examining the role of peer relationships in the development of psychopathology. Journal
of Child Psychology and Psychiatry, 42, 565–579.
DiLollo, A., Manning, W. H., & Neimeyer, R. A. (2003). Cognitive anxiety as a function of speaker role for fluent speakers and persons who stutter.
Journal of Fluency Disorders, 28, 167–186.
Evans, M. G. (1991). The problem of analyzing multiplicative composites. American Psychologist, 46(1), 6–15.
Ezrati-Vinacour, R., & Levin, I. (2004). The relationship between anxiety and stuttering: A multidimensional approach. Journal of Fluency Disorders,
29, 135–148.
Fayers, P. M., Groenvold, M., Hand, D. J., & Bjordal, K. (1998). Clinical impact versus factor analysis for quality of life questionnaire construction.
Journal of Clinical Epidemiology, 51(3), 285–286.
Food and Drug Administration. (2006). Guidance for industry patient-reported outcomes measures: Use in medical product devel-
opment to support labelling claims. Draft guidance. Retrieved 24 November 2009 from http://www.fda.gov/downloads/Drugs/
GuidanceComplianceRegulatoryInformation/Guidances/ucm079257.pdf
Franic, D. M., & Bothe, A. K. (2008). Psychometric evaluation of condition-specific instruments used to assess health-related quality of life, attitudes,
and related constructs in stuttering. American Journal of Speech-Language Pathology, 17, 60–80.
Hagerty, M. R., Cummins, R. A., Ferris, A. L., Land, K., Michalos, A. C., Peterson, M., et al. (2001). Quality of life indexes for national policy:
Review and agenda for research. Social Indicators Research, 1–91.
Hawker, D. S. J., & Boulton, M. J. (2002). Research on peer victimization and psychosocial maladjustment: A meta-analytic review of cross-sectional
studies. Journal of Child Psychology and Psychiatry, 41, 441–445.
Headey, B., & Wearing, A. (1989). Personality, life events, and subjective well-being: Toward a dynamic equilibrium model. Journal of Personality
and Social Psychology, 57, 731–739.
Henderson, S. (1977). The social network, support and neurosis. The function of attachment in adult life. British Journal of Psychiatry, 131, 185–191.
Hilari, K., & Byng, S. (2001). Measuring quality of life in people with aphasia—The Stroke Specific Quality of Life Scale. International Journal
of Language and Communication Disorders, 36, 86–92.
International Wellbeing Group. (2006). Personal wellbeing index. Retrieved 24 November 2009 from http://www.deakin.edu.au/research/
acqol/instruments/wellbeing index.htm
Iverach, L., Jones, M., O’Brian, S., Block, S., Lincoln, M., Harrison, E., et al. (2009). Screening for personality disorders among adults seeking
speech treatment for stuttering. Journal of Fluency Disorders, 34, 173–186.
Kane, R. A. (2003). Definition, measurement, and correlates of quality of life in nursing homes: Toward a reasonable practice, research, and policy
agenda. Gerontologist, 43, 28–36.
Klein, J. F., & Hood, S. B. (2004). The impact of stuttering on employment opportunities and job performance. Journal of Fluency Disorders, 29,
255–273.
Klompas, M., & Ross, E. (2004). Life experiences of people who stutter, and the perceived impact of stuttering on quality of life: Personal accounts
of South African individuals. Journal of Fluency Disorders, 29, 275–305.
Kraaimaat, F. W., Vanryckeghem, M., & Van Dam-Baggen, R. (2002). Stuttering and social anxiety. Journal of Fluency Disorders, 27,
319–331.
Kraut, R., Patterson, M., Lundmark, V., Kiesler, S., Mukopadhyay, T., & Scherlis, W. (1998). Internet paradox: A social technology that reduces
social involvement and psychological well-being? American Psychologist, 53, 1017–1031.
Leplege, A., & Hunt, S. (1997). The problem of quality of life in medicine. Journal of the American Medical Association, 278, 47–59.
Lykken, D., & Tellegen, A. (1996). Happiness in a stochastic phenomenon. Psychological Science, 7, 186–189.
Mahr, G. C., & Torosian, T. (1999). Anxiety and social phobia in stuttering. Journal of Fluency Disorders, 24, 119–126.
McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of
validity in measuring physical and mental health constructs. Medical Care, 31, 247–263.
McKenna, K. Y. A., & Bargh, J. A. (2000). Plan 9 From cyberspace: The implications of the internet for personality and social psychology. Personality
and Social Psychology Review, 4(1), 57–75.
172 R.A. Cummins / Journal of Fluency Disorders 35 (2010) 161–172

McKenna, K. Y. A., Green, A. S., & Gleason, M. E. J. (2002). Relationship formation on the Internet: What’s the big attraction? Journal of Social
Issues, 58(1), 9–31.
Menzies, R. G., Onslow, M., & Packman, A. (1999). Anxiety and stuttering: Exploring a complex relationship. American Journal of Speech-Language
Pathology, 8, 3–10.
Merriam-Webster Online Dictionary. (2009). Retrieved 24 November 2009 from http://www.m-w.com.
Messenger, M., Onslow, M., Packman, A., & Menzies, R. (2004). Social anxiety in stuttering: Measuring negative social expectancies. Journal of
Fluency Disorders, 29, 201–212.
Michalos, A. C. (2004). Social indicators research and health-related quality of life research. Social Indicators Research, 65, 27–72.
Miller, S., & Watson, B. C. (1992). The relationship between communication attitude, anxiety and depression in stutters and nonstutters. Journal of
Speech and Hearing Research, 35, 789–798.
Miller, S., & Watson, B. C. (1994). Response to Craig. Journal of Speech and Hearing Research, 37, 92–95.
Mulcahy, K., Hennessey, N., Beilby, J., & Byrnes, M. (2008). Social anxiety and the severity and typography of stuttering in adolescents. Journal
of Fluency Disorders, 33, 306–319.
Nicholson, P., & Anderson, P. (2003). Quality of life, distress and self-esteem: A focus group study of people with chronic bronchitis. British Journal
of Health Psychology, 8, 251–270.
Nie, N. H., & Erbring, L. (2000). Internet and society: A preliminary report from http://www.stanford.edu/group/siqss [now withdrawn from
publication].
O’Keefe, B. M. (1996). Communication disorders. In R. Renwick, I. Brown, & M. Nagler (Eds.), Quality of life in health promotion and rehabilitation
(pp. 219–236). London: Sage Publications.
Oxford Handy Dictionary. (1991). Chancellor Press.
Patrick, D. L., Martin, M. L., Bushnell, D. M., Yalcin, I., Wagner, T. H., & Buesching, D. P. (1999). Quality of life for women with urinary
incontinence: Further development of the incontinence quality of life instrument (I-QOL). Urology, 53, 71–76.
Peters, T. J., & Guitar, B. (1991). Stuttering: An integrated approach to its nature and treatment. Baltimore: Williams & Wilkins.
Ross, E. (2001). A social work perspective on stuttering. Social Work, 37(1), 35–42.
Ross, K., & Wertz, R. (2003). Quality of life with and without aphasia. Aphasiology, 17, 355–364.
Rothbaum, F., Weisz, J. R., & Snyder, S. S. (1982). Changing the world and changing the self: A two-process model of perceived control. Journal
of Personality and Social Psychology, 42, 5–37.
Sarason, I. G., Sarason, B. R., & Pierce, G. R. (1990). Social support: The search for theory. Journal of Social and Clinical Psychology, 9, 137–147.
Sheeks, M. S., & Birchmeier, Z. P. (2007). Shyness, sociability, and the use of computer-mediated communication in relationship development.
Cyberpscyhology & Behavior, 10(1), 64–70.
Sintonen, H. (2001). The 15D instrument of health-related quality of life: Properties and applications. Annals of Medicine, 33, 328–336.
van Riper, C. (1971). The nature of stuttering. New Jersey: Prentice-Hall Inc.
WHO. (1947). Definition of health. World Health Organisation.
WHOQOL Group. (1995). WHOQOL study protocol. Geneva: WHO, Division of Mental Health.
Wooden, M. (2002). HILDA survey annual report 2002. Victoria, Australia: Melbourne Institute of Applied Economic and Social Research, The
University of Melbourne.
Worrall, L. E., & Holland, E. L. (2003). Editorial: Quality of life in aphasia. Aphasiology, 17, 327–332.
Yik, M. S. M., Russell, J. A., & Barrett, L. F. (1999). Structure of self-reported current affect: Integration and beyond. Journal of Personality and
Social Psychology, 77, 600–619.

Robert A. Cummins has held a personal chair in Psychology at Deakin University since 1997. He has published widely on the topic of Quality of
Life and is regarded as an international authority in this area. He is an editor of the Journal of Happiness Studies.

S-ar putea să vă placă și