An investigation into the personal financial costs associated with stuttering

Journal of Fluency Disorders 35 (2010) 203–215

An investigation into the personal financial costs associated with stuttering Elaine Blumgart, Yvonne Tran, Ashley Craig ∗ Rehabilitation Studies Unit, Northern Clinical School, Sydney Medical School, The University of Sydney, P.O. Box 6, Ryde, NSW 1680, Australia Received 8 December 2009; received in revised form 1 March 2010; accepted 4 March 2010

Abstract Stuttering has been found to deteriorate quality of life in psychological, emotional and social functioning domains. It is reasonable to assume then that stuttering would also be associated with economic consequences that may also challenge quality of life. Remarkably, the personal financial costs associated with stuttering in adults has rarely if ever been explored or investigated in the fluency disorders field. This study involved an assessment of the personal costs of stuttering and an investigation into determinants that may influence spending. Two hundred adults who stutter participated in this study. Findings indicated that the average total cost was around $5,500 (median cost $4,165) in 2007/08 Australian dollars over a 5-year period. Major financial items included costs of direct and indirect treatments for stuttering, self-help, stuttering related conferences, and technology. Financial costs were not significantly influenced by the sex of the person, annual income, or by how severe the person stuttered. However, those individuals younger than 60 years old spent significantly more on treatment related costs, while those with elevated levels of social anxiety spent significantly less than those with lower levels of social anxiety. Quality of life implications associated with stuttering are discussed. Educational objectives: The reader will be able to: (a) describe the method for assessing the direct financial costs of stuttering over a 5-year period; (b) describe the financial personal cost of stuttering for adults who stutter; (c) describe the relationship between factors like sex, age, severity of stuttering and financial costs; and (d) describe the relationship between social anxiety and the financial cost of stuttering. © 2010 Published by Elsevier Inc. Keywords: Stuttering; Direct costs; Social anxiety; Quality of life; Fluency disorder

1. Introduction Stuttering is a chronic neurological condition (Namasivayam & van Lieshout, 2008) that has been found to have a negative impact on quality of life (Craig, Blumgart, & Tran, 2009). Stuttering was found to increase risks of reduced vitality (that is, increased levels of fatigue), as well as reduced social, emotional and mental health functioning, and the negative impact of stuttering in these four domains was equivalent to the impact in these same domains from chronic disorders such as spinal cord injury, diabetes and heart disease (Craig et al., 2009). The ability to work is an important indicator of quality of life (QOL), and stuttering has also been found to reduce capacity to function satisfactorily in the ∗

Corresponding author. Tel.: +61 2 9808 9236; fax: +61 2 9809 9037. E-mail address: [email protected] (A. Craig).

0094-730X/$ – see front matter © 2010 Published by Elsevier Inc. doi:10.1016/j.jfludis.2010.03.002

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work context (Klein & Hood, 2004). Clearly, the negative impact in these areas has the potential to create an economic burden and impose personal financial costs, which arguably can further negatively impact a person’s QOL (Allard & Williams, 2008; Schnittker, 2005). Surprisingly, the economic cost of stuttering has received very little attention in the field of fluency disorders, even though it is known that other chronic diseases such as cardiovascular disease, diabetes and asthma can exact a significant economic burden (Hogan, Dall, & Nikolov, 2003; Pelletier, Mansbach, & Camargo, 2006; Trogdon, Finkelstein, Nwaise, Tangka, & Orenstein, 2007). It is not at all surprising that stuttering could result in significant financial costs. For instance, communication effectiveness is crucial for the maintenance of social engagement (Taylor, Peplau, & Sears, 1994), and more often than not stuttering will disrupt communication effectiveness (Craig, Hancock, Tran, Craig, & Peters, 2003). Furthermore, even after treatment, stuttering can be physically and emotionally exhausting because for many individuals it requires constant monitoring to control severity (Kalinowski & Dayalu, 2002; O’Brien, Packman, Onslow, & O’Brien, 2003). Even when speaking fluently, people who stutter may place more importance on monitoring for signs of negative reactions in the listener and how they themselves (the person who stutters) are speaking, rather than listening to what is being said (Petrunik & Shearing, 1988). According to the National Stuttering Association (1999) and recent research (Allard & Williams, 2008; Craig, Tran, & Craig, 2003), negative stereotypes about stuttering exist. Common stereotypical beliefs assume that people who stutter are nervous, incompetent, and shy (Craig, Tran, et al., 2003; Leahy, 1994; Linn & Caruso, 1998; Iverach, O’Brien, et al., 2009). Furthermore, people who stutter are often evaluated negatively by people known to them such as teachers and employers (Cooper & Cooper, 1996; Craig & Calver, 1991; Crichton-Smith, 2002), by the general public (Doody, Kalinowski, Armson, & Stuart, 1993), by those who do not stutter (Craig, Tran, et al., 2003; MacKinnon, Hall, & MacIntyre, 2007), and negative attitudes toward the work competence of people who stutter have been reported (Klassen, 2001). Research has now also confirmed that stuttering elevates state, trait and social anxiety (Blumgart et al., 2010; Craig & Tran, 2006; Craig, Hancock, et al., 2003; Ezrati-Vinacour & Levin, 2004; Iverach, O’Brien, et al., 2009; Menzies et al., 2008; Messenger, Onslow, Packman, & Menzies, 2004; Mulcahy, Hennessey, Beilby, & Byrnes, 2008). For example, in a group of 34 adults who stutter, Messenger et al. (2004) showed that the people who stuttered had significantly elevated fears of negative evaluation in social situations. For these reasons, the work environment can be threatening both emotionally and financially to people who stutter (Hurst & Cooper, 1983; Rice & Kroll, 1994). Klein and Hood (2004) reported that 70% of people who stutter agreed that their stuttering had decreased their chances of obtaining employment or being promoted and more than 33% felt that stuttering interfered with job performance. Of this cohort, 20% reported that they had been turned down for a job, or a promotion, because of their stuttering. In addition, negative attitudes towards stuttering are common in terms of career opportunities and in the workplace in general (Craig & Calver, 1991; Gabel, Blood, Tellis, & Althouse, 2004; Leahy, 1994; Silverman & Paynter, 1990). Findings also show that people who stutter often work in positions below their potential (Craig & Calver, 1991), or that they often do not choose the career they actually want (Peters & Starkweather, 1989). From an economic perspective, the insecurity related to employment status can be significant burden for people who stutter. The direct personal cost of treatment is a possible economic burden for people with disease and disability (Drummond, O’Brien, Stoddart, & Torrance, 1998). Stuttering is no exception. For instance, intensive forms of treatment are known to be efficacious (Bloodstein & Bernstein-Ratner, 2008), however, intensive treatment is likely to be expensive. Furthermore, owing to the chronic nature of stuttering and the potential for relapse, people who stutter may need to return frequently to be re-treated (Craig, 1998). This imposes an additional economic burden. Furthermore, because direct stuttering therapies may not always be effective, many will inevitably seek other forms of treatment, for example, to manage their social fears associated with their stuttering (Menzies et al., 2008). Examples of indirect treatments for stuttering include cognitive behavior therapy (say for anxiety), acupuncture, hypnotherapy, pharmacotherapy, as well as individual counseling or self-help support groups (Ramig, 1993; Yaruss et al., 2002). Additional direct costs may also include “out-of-pocket” expenses such as transportation costs to clinics, self-help costs (e.g. maintenance of fluency costs), technology costs (e.g. audio-tape recorders; delayed feedback devices), and in the ongoing quest for new knowledge regarding the causes and latest treatment of stuttering, many may attend national and international seminars, conventions and conferences. Clearly, the direct costs associated with stuttering may impose a substantial financial burden. Although methodologies for estimating costs in chronic conditions have been successfully employed in QOL and disability research (Bean, Vora, & Frontera, 2004; Gold, Siegel, Russell, & Weinstein, 1996), to date, only a few QOL

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studies in the stuttering field have been conducted. For instance, one study employed the use of preference-based economic measures of QOL assessment in which the opinion of people who did not stutter was sought about their choices associated with speech and disfluency (Bramlett, Bothe, & Franic, 2006), while Yaruss and Quesal (2006) have developed a self-report scale to measure the impact of stuttering on QOL. QOL research can also take the form of assessing the financial impact of a disease on the community (Bean et al. 2004; Berger-Schmitt & Jankowitsch, 1999; Cummins, 1995; Fayers & Bjordal, 2001; Gold et al., 1996; Judge & Watanabe, 1993; Schnittker, 2005). Importantly, neither community nor personal cost research has been conducted in the field of stuttering. An aim of the present research was to rectify this situation by using conventional methods of cost estimation (Patrick & Erickson, 1993), where direct personal costs were retrospectively calculated in monetary terms. Direct cost considerations can have an immediate impact on one’s lifestyle (Grabowski & Hansen, 1996) and it is possible that these costs might be substantial enough to impact QOL in people who stutter. Furthermore, the findings of such a cost study may assist in the improvement of treatment procedures, reduce relapse rates and develop broader estimates of cost savings (Wyrwich & Wolinsky, 2000). In the Australian context, allied professional services are only partially covered by government based health rebates (e.g. Medicare), and a disorder such as stuttering, that can have a considerable allied professional expenditure component, can adversely impact lower income families, who may have difficulties affording private health insurance or otherwise paying for the treatment. This paper presents results of a study designed to determine the direct personal cost of stuttering in Australian dollars. This study did not estimate the costs to the community. The primary aim of the investigation was to determine the financial costs of stuttering that the individual incurred over a 5-year retrospective period across a range of potential cost areas, such as treatment and treatment related expenses. A second aim was to determine whether factors such as age, sex, stuttering severity, health status and social anxiety influence these costs. 2. Method 2.1. Participants Participants in this study consisted of 200 male and female adults who stuttered. They were invited into the study after approaching self-help groups in New South Wales (NSW) and the Australian Capital Territory, as well as private speech pathology practices, general medical practitioners, speech pathology departments of public hospitals and community health-care centers. Recruitment continued until 200 had agreed to participate. The ratio of male to female (M:F) stuttering participants entered into the study was based on epidemiological data from research conducted in NSW (Craig, Hancock, Tran, Craig, & Peters, 2002). The Craig et al. (2002) findings suggest that a NSW adult M:F ratio lay within the range of 2:1 to 4:1. This sex proportion was therefore applied to the group of 200. The final M:F ratio was around 3.1:1, that is, about three males (n = 151) for every female (n = 49). Additionally, the adult age range for the study was 18–85 years and participants were recruited in direct proportion with the most recent NSW age distribution population statistics (Australian Bureau of Statistics, 2006; www.abs.gov.au). This was achieved by dividing the age range into 5-year cells (e.g. 30–34 years) and determining the subject numbers needed for each cell, based on the NSW population distribution and stuttering sex ratio. Exclusion criteria for the stuttering participants consisted of: (a) any present history of a physical, or neurological disorder or condition that was independent of stuttering and that could dominate the impact of stuttering, for instance, a diagnosed neurodegenerative disorder such as Parkinson’s disease, alcohol or drug dependence disorder or a traumatic neurological injury. It was important to control for confounding influences of conditions known to lower QOL such as traumatic neurological injury (Middleton, Tran, & Craig, 2007). (b) People aged less than 18 years or over 85 years at the time of interview, and (c) unable to speak English. Only participants who were certain that these criteria did not apply to them were invited to participate in the study. The study received research ethics approval from the local institutional human research ethics committee and participants provided written consent before participating in the study. 2.2. Definition of stuttering Stuttering was defined as a disorder in the rhythm of speech, in which the individual knows what he or she wishes to say, but at the same time is unable to say it because of an involuntary, repetitive prolongation or cessation of sound

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(Andrews et al., 1983). Stuttering included repetitions of syllables, part-or-whole words, or phrases, prolongations of speech, and / or blocking of sounds (Craig, Hancock, Chang, et al., 1996). 2.3. Design A population group cohort study design was used in order to ensure that participants were recruited according to the proportion of the age distribution for the community in which the study was conducted. Participants were stratified for age and sex. The study retrospectively assessed the personal costs of stuttering by asking participants to estimate costs incurred over the prior 5 years from the date of assessment. 2.4. Measures 2.4.1. Demographics and assessment of stuttering Demographic measures included age, sex, level of education, age at which stuttering was diagnosed, country of birth, employment status, annual income and health risk status. Education was categorized into four levels, the first consisting of those who had completed only elementary or primary school, the second those completing only high school, the third consisted of those who had completed a technical education course and the fourth, those who had completed some form of tertiary education. Employment status was categorized into those with full-time employment, those with part-time employment, self-employed, student, retired and unemployed. Country of birth was categorized into those born in Australia and those born overseas. Stuttering severity was calculated from three minute recorded speech samples of conversational speech. From these samples, stuttering frequency (percent syllables stuttered or %SS) was calculated. Details on determining %SS and the acceptable validity and reliability of this measure have been published (Craig, Hancock, Chang, et al., 1996; Craig, Hancock, & Craig, 1996). The speech samples were recorded using a 20 GB MP3 HDD, digital audio and video player (Cowon IAUDIO X5 HDD). Frequency of stuttering was calculated by an experienced speech pathologist. In order to confirm the reliability of %SS assessment, an experienced clinician and researcher randomly reassessed 10% of the speech samples. Inter-rater reliability was established for frequency of stuttering as measured by %SS (mean %SS for rater 1 = 3.37, SD = 3.4; rater 2 = 3.66, SD = 3.5; df = 38, t = 0.25, p = ns; Pearson correlation r = 0.99, p < 0.01). Perceived stuttering severity was also assessed, where 1 was equated to mild stuttering, 5 to moderate stuttering and 10 to severe stuttering. All 200 adults who stuttered were asked to provide an estimate of their annual income over the past five years, with choices beginning with less than $30,000, increasing in amounts of $10,000 (e.g. $30,000–39,999), with the highest choice being greater or equal to $130,000. All participants also completed Part 1 of the Lifestyle Appraisal Questionnaire (LAQ), a standardized self-report health risk measure (Craig, Hancock, & Craig, 1996). Part I consists of a comprehensive measure of multiple health risk factors experienced over the past eight weeks, including factors such as body mass index, diet, alcohol and nicotine intake, presence of major diseases, blood pressure level, and so on. A higher score for Part 1 (LAQ1) indicates elevated health risks while a score of less than 20 indicates normal health. The test–retest reliability of the LAQ1 has been demonstrated (Craig, Hancock, & Craig, 1996). 2.4.2. Social anxiety The Fear of Negative Evaluation-Long Form (FNE: Watson & Friend, 1969) was used to provide a measure of the participant’s fear of evaluation. The FNE is a 30-item measure of social evaluative anxiety. A high score on the FNE (≥24) indicates high levels of fear in social evaluative situations. The FNE is a valid and reliable measure of social anxiety (Heimberg, Hope, Rapee, & Bruch, 1988; Stopa & Clark, 2001; Watson & Friend, 1969). 2.4.3. Socioeconomic measures Socioeconomic measures included information concerning household annual income, and details about financial costs incurred as a result of stuttering over a 5-year period immediately prior to assessment. This time frame was chosen because it is a reasonable period of time to expect people to be able to recall with some accuracy; thus limiting overor underestimation of information retrieval. Direct financial costs included: (i) costs of primary speech treatment (e.g. prolonged or smooth speech, Maguire, DAF); (ii) costs of indirect or alternative treatments (e.g. cognitive behavior therapy, hypnosis); (iii) re-treatment costs; (iv) self-help groups such as membership fees; (v) costs of accessing stuttering relevant information such as books and journals; (vi) technology costs for electronic equipment such as

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voice recorders, delayed auditory feedback machines, metronomes; (vii) attendance costs for organized events such as conferences or stuttering seminars; (viii) transport costs related to treatment. Participants were provided with specially prepared booklets that itemized the above cost items over a 5-year period and were asked to estimate costs incurred in the booklets. Costs were then calculated in real dollars in each category for each participant. Opinions (yes or no) were also solicited from the 200 adults who stuttered about whether (i) they found it difficult to obtain employment due to their stuttering, (ii) they have had their employment terminated due to their stuttering, and (iii) whether they have failed to obtain a promotion due to their stuttering. 2.5. Procedure All participants attended a 2–3 h interview conducted in a relaxed and confidential manner. After the consent form was signed providing permission for the interview to take place, the participant and the interviewer engaged in an informal discussion for around three minutes and this was audio-taped for the purpose of determining stuttering severity. Following this, participants completed the FNE and LAQ1. This was followed by a structured interview that solicited information about the influence of stuttering on their life, including the financial costs incurred related to stuttering. Participants were given ample opportunity to ask questions regarding the research or their fluency status. For a minority of participants (N = 54, 13.5%) who were unable to attend the face-to-face interview session, a mailout and telephone combination was used to collect the data. The interview booklet together with the consent form and information sheet, were mailed to these participants who met the exclusion criteria. When these were returned, a telephone interview was arranged at a mutually convenient time in which a speech sample was collected and any relevant questions regarding the interview booklet were addressed. 2.6. Analysis Descriptive statistics were calculated for costs of stuttering. The significance of the influence of age (<60 and ≥60 years), sex (male and female), %SS (4%SS was used as a cut-off as the mean %SS for the entire sample was 3.7%SS, therefore, <4 and ≥4%SS), health risks (<20 and ≥20 on the LAQ1) and social anxiety (<24 and ≥24 on the FNE scale) on the extent of personal financial costs associated with stuttering was determined by employing non-parametric Mann–Whitney U-tests. Associations between factors were calculated using Spearman rank order correlations. All financial estimates are provided in Australian dollars in the years 2007 and 2008. 3. Results Most of the participants had sought treatment in their lifetime (n = 187; 94%). For the few who had never sought treatment, reasons included treatment not available, believing their stutter was not severe enough and lack of faith in treatment. A total of 26% (n = 52) were born overseas and were immigrants. Table 1 provides detail on age, age diagnosed for stuttering, stuttering severity (%SS), perceived severity, health risk status (LAQ1), and social anxiety levels (FNE) for 200 male and female adults who stuttered. There were no significant differences between male and female adults who stuttered for these six measures. Fig. 1 shows the distribution of annual income in the group. About one-third (33.5%) of the 200 earned less than $50,000 per annum, 35% earned between $50,000 and $99,999, while just under one-third (31.5%) earned over $100,00 per annum. Annual income and total financial costs were not Table 1 Details for age, age stuttering diagnosed, percent syllables stuttered (%SS), perceived stuttering severity (perc sev), where 1 = mild, 5 = moderate and 10 = severe stuttering, health risks as assessed by the Lifestyle Appraisal Questionnaire (LAQ1), and the level of social anxiety assessed by the FNE, for the 200 adults who stuttered as a function of sex. Age (years) (mean (SD))

Age diag (years) (mean (SD))

%SS (mean (SD))

Perc sev (mean (SD))

Health risks (mean (SD))

FNE (mean (SD))

Males (n = 151) Females (n = 49)

46.7 (16) 42.5 (16)

5.8 (2.6) 5.5 (3.2)

3.6 (2.7) 3.9 (3.2)

4.1 (2) 4.5 (2)

15.1 (6) 14.2 (7)

15.1 (9) 15.4 (8)

Total (N = 200)

45.7 (16)

5.7 (2.8)

3.7 (2.8)

4.2 (2)

14.9 (6)

15.2 (9)

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Fig. 1. . Shows annual income distribution for the 200 adults who stuttered.

significantly associated with each other, and using Spearman rank order correlations, no significant relationships were found between personal costs and age, sex, age diagnosed for stuttering, place of birth, education, employment, %SS, health risks (LAQ1), and social anxiety (FNE). 3.1. Education and employment details For all participants, 56% percent had completed tertiary studies, 22.5% had completed technical education, 17% had completed 6 years of secondary education and 4.5% had completed 4 or less years of secondary schooling. Employment profiles of the participants showed that 62% (n = 124) were working full-time at the time of the study, 11% (n = 22) part-time or in home duties, 4.5% (n = 9) were students, 10.5% (n = 21) were self-employed, 10.5% (n = 21) had retired and 1.5% (n = 3) were unemployed. Half the sample (n = 100) believed it had been difficult for them to find employment due to their stuttering and females were just as likely to find it as difficult as males. Less than 10% (7.5%, n = 15) stated they had their employment terminated due to their stuttering and females were just as likely as males to lose their employment. A large minority (n = 75 or 37.5%) responded that they had failed to gain promotion due to their stuttering and again, females were just as likely not to get promotion. 3.2. Costs of stuttering Table 2 shows a detailed breakdown of the financial costs of stuttering over a 5-year period. For the majority who had financial costs related to their stuttering in the past 5 years (n = 181; 19 of the 200 spent nothing in the past 5 years), the total mean dollars spent over the 5 years was $5,478 (SD = 5378; median cost = 4,165). An average of $2,715 (SD = 1352; median cost = 2,700) was spent on speech treatment over a 5-year period by 58.5% of the sample (n = 117), while 83 spent nothing on speech treatment in the past 5 years. However, some spent substantially related to their stuttering, for instance, one person spent $8,245 on speech treatments over a 5-year period. Alternative treatments Table 2 Direct financial costs of stuttering across spending domains over a 5-year period in Australian dollars. CI = confidence interval of the mean. COST

Participants

Mean (SD)

95%CI

Median

Max

Speech treatment Other treatment Re-treatment Self-help Information Technology Conferences Travel Total direct cost

117 47 92 107 74 41 43 117 181

2715 (1352) 3294 (6247) 1514 (2060) 1641 (1678) 143 (174) 613 (1260) 2389 (2505) 554 (854) 5478 (5378)

2467–2963 1460–5129 1088–1941 1319–1962 102–183 216–1011 1618–3161 397–710 4689–6267

2700 1510 700 1125 85 100 1650 240 4165

8245 40415 12000 7700 1000 4980 12500 7000 44745

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Table 3 Stuttering related financial cost breakdown as a function of sex. COST

Speech treat Other treat Re-treatment Self-help Information Technology Conferences Travel Total cost

Male

Female

N

Mean (SD)

Median

N

Mean (SD)

Median

88 36 67 81 53 35 34 90 136

2721 (1393) 3640 (7057) 1740 (2297) 1774 (1802) 144 (150) 625 (1316) 2429 (2733) 626 (946) 5880 (5964)

2700 1350 700 1225 100 100 1400 250 4187

29 11 25 26 21 6 9 27 45

1596 (1642) 2164 (1842) 912 (1037) 1227 (1147) 142 (230) 548 (960) 2244 (1457) 316 (349) 4261 (2682)

1925 1920 520 815 55 175 2000 200 3370

to direct speech interventions were also sought, and an average of $3,294 (SD = 6247, median cost = 1,510) was spent on alternative treatments by a minority (n = 47), with the majority (n = 153) spending nothing on other types of treatment for their stuttering. Re-treatment or boosters were sought by almost half the sample (n = 92) over 5 years and these expenses totaled a mean $1,514 (SD = 2060; median cost = 700) over 5 years. Self-help costs totaled a mean $1,641 (SD = 1678, median cost = 1,125) for 107 participants. Information material such as the purchase of stuttering related books and tapes totaled a mean $143 (SD = 174, median cost = 85) over 5 years, while costs for technology such as audio recorders and DAF machines totaled a mean $613 (SD = 1260, median cost = 100). A minority (n = 43) participated in stuttering related conferences and seminars, and these costs totaled a mean $2,389 (SD = 2505, median cost = 1,650) over 5 years, while stuttering related travel costs over 5 years totaled a mean $554 (SD = 854, median cost = 240). Tables 3–6 show the breakdown of financial costs as a function of sex, age (younger than 60 years versus 60 or above), severity of stuttering (less than 4%SS versus 4%SS or greater) and social anxiety (less than 24 on the FNE versus 24 or greater), respectively. Females were not significantly different to males in their stuttering related spending, though there was a consistent trend for males to spend more. Younger participants (less than 60 years) spent significantly more (U = 2127, Z = 3.7, p < 0.01) on speech treatments than people aged 60 and above, while there was a trend for those aged 60 and above to have a higher total expenditure on alternative treatments. Severity of stuttering did not significantly influence spending related to stuttering. However, there was a trend for the more severe to spend more on speech treatments and self-help, while less the severe spent more on other treatments for their stuttering. Levels of social anxiety significantly influenced spending. Those with lower levels of social anxiety (or lower levels of fear of negative evaluation) spent significantly more than those with elevated social anxiety levels. Significant differences were found for total financial costs (U = 2530, Z = 2.9, p < 0.01), speech treatment (U = 2499, Z = 3.0, p < 0.01) and alternative treatment costs (U = 2800, Z = 1.9, p < 0.05). A trend occurred for those with lower levels of social anxiety to spend more across all areas except for travel (which was similar). The health risk breakdown as a function of cost is not provided, however, health risk status did not significantly influence spending on stuttering over the 5-year period. Table 4 Stuttering related financial cost breakdown as a function of age. COST

Speech treat Other treat Re-treatment Self-help Information Technology Conferences Travel Total cost *

p < 0.01.

≥60 years

<60 years N

Mean (SD)

Median

N

Mean (SD)

102 38 74 78 61 36 30 89 145

2813 (1328) 2574 (3050) 1522 (1790) 1640 (1600) 1565 (187) 605 (1299) 2492 (2847) 552 (914) 5387 (4582)

2700 1450 700 1187 97 105 1375 240 4200

15 9 18 29 13 5 13 28 36

2051 (1377) 6337 (12981) 1485 (2995) 1644 (1903) 809 (65) 679 (1055) 2153 (1518) 561 (647) 5844 (7887)

Median 2330* 1800 350 1085 55 100 1700 200 3357

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Table 5 Stuttering related financial cost breakdown as a function of stuttering severity. COST

≥4%SS

<4%SS

Speech treat Other treat Re-treatment Self-help Information Technology Conferences Travel Total cost

N

Mean (SD)

Median

N

Mean (SD)

Median

72 33 62 72 48 26 30 80 117

2632 (1234) 3671 (7094) 1550 (2175) 1503 (1442) 158 (197) 753 (1485) 2541 (2889) 531 (661) 5654 (5932)

1455 1560 700 1137 95 110 1275 250 4230

45 14 30 35 26 15 13 37 64

2848 (1528) 2408 (3610) 1441 (1833) 1924 (2078) 115 (119) 372 (709) 2040 (1268) 606 (1180) 5156 (4207)

2800 1450 650 750 75 100 2050 200 3497

Table 6 Stuttering related financial cost breakdown as a function of social anxiety assessed by the FNE. COST

Speech treat Other treat Re-treatment Self-help Information Technology Conferences Travel Total cost * **

≥24

<24

Sign

N

Mean (SD)

Median

N

Mean (SD)

Median

35 18 26 20 20 14 11 27 43

2920 (1489) 4475 (9266) 2116 (2434) 1805 (1675) 198 (236) 887 (1684) 3407 (3704) 509 (541) 7947 (8274)

2800 1430 810 1042 130 135 2050 260 4900

82 29 66 87 54 27 32 90 138

2627 (1289) 2562 (3246) 1278 (1861) 1603 (1687) 123 (142) 472 (982) 2040 (1893) 568 (931) 4708 (3809)

2650 1510 625 1125 65 100 1400 233 3680

** *

**

p < 0.05. p < 0.01.

4. Discussion Around two-thirds of the stuttering participants had an annual income in excess of $50,000 and most were employed at the time of the study with 62% working full-time. It was a concern, however, that stuttering was associated with employment concerns. 50% of the sample believed their stuttering made it difficult to obtain employment, 37.5% reported that they had failed to be promoted due to their stuttering, and 7.5% reported that their employment had been terminated due to their stuttering. This data supports prior research that has found stuttering is associated with employment difficulties (Klein & Hood, 2004), and arguably, as a consequence, the experience of employment difficulties will have a negative impact on life satisfaction. As argued elsewhere, it is crucial that future resources be devoted to the development of treatment protocols that prepares people who stutter, especially those in late adolescence and young adults, to deal with potential vocational stresses and barriers, so they can cope and adjust more effectively to the work context (Craig et al., 2009). Interventions could include social skills training applied to the workplace, interviewing skills, and stress management skills designed to address stressful encounters likely to be experienced in the workplace context. Most importantly, this study revealed that many adults who stutter spent a considerable amount on items related to their stuttering. Only 19 of the 200 spent nothing in the past 5 years on items related to their stuttering. However, for the majority, spending was found to be $5,478 (median 4,165) over 5 years. This is a significant amount of money in view of the fact that presently in Australia there is very limited Government financial support for adults seeking treatment for their stuttering. Therefore, if an adult seeks treatment for their stuttering, then the full financial cost will most likely be borne by them. It is possible that an expenditure of just over $1,000 per annum may not represent a financial burden for most, as the data revealed that 64% (n = 116 of the 181) spent less than $5,000 over 5 years. However, the remaining 36% (n = 65) spent considerably more, with 26.5% (n = 48) spending between $5,000 and $9,999, and 9.5%

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(n = 17) spending over $10,000 in 5 years, including nine individuals who spent over $15,000 in 5 years. Furthermore, annual income was not found to be significantly related to total financial expenditure, suggesting that it is not only those at the higher end of the income bracket who are spending substantially on their stuttering. For instance, of the nine individuals who spent over $15,000 over 5 years, four received less than $50,000 per annum. This finding of significant spending associated with stuttering is timely, as research has begun to determine the impact that stuttering can have on QOL (Craig et al., 2009), especially in the area of social and mental health functioning (Blumgart et al., 2010; Iverach, O’Brien, et al., 2009; Iverach, Jones, et al., 2009). The personal financial cost of stuttering is significant and has the potential to make a further negative impact on QOL. Future research should establish patterns of spending in countries with differing health systems, and the financial cost of stuttering should be explored further, especially in those who are financially vulnerable, such as those with elevated social anxiety or psychopathology, or young families who have children who stutter, where significant spending may need to occur to meet the special needs of the child who stutters. It may have been expected that the majority of spending would be related to paying for speech related treatments designed to reduce stuttering directly, such as fluency shaping or stuttering modification techniques. In fact, just under half the average total spending was devoted to paying for speech treatments. Interestingly, a minority of around 26% spent substantially on alternative treatments such as cognitive behavior therapy, hypnotherapy, neuro-linguistic programming, pharmacotherapy, relaxation therapies, and acupuncture. It is a concern that a number of treatments sought by participants have no evidence base for efficacy of managing stuttering or associated anxiety. The trend for those who stuttered more severely to spend more on speech treatments and the less severe to spend more on alternative treatments is an important finding that deserves further attention. Another major area of expenditure included self-help. Given there is no known cure for stuttering, and that most treatments require self-help and self-control skills, it is not surprising that spending on self-help was substantial. Selfhelp costs included the cost of attending special fluency meetings and motivational groups, telephone calls involving instruction and encouragement and so on. Self-help is considered an important and desirable component in managing chronic disease (National Health and Hospitals Reform Commission, 2009), and stuttering is no different (Ramig, 1993; Yaruss et al., 2002). Almost 60% of the participants spent $1,641 over the 5 years on self-help resources. Related to this is the need for re-treatment or boosters. Relapse is a risk following treatment for stuttering (Craig, 1998; Iverach, Jones, et al., 2009), so it was no surprise that just over half the sample (51%) spent considerably on re-treatment costs. Furthermore, for many, the management of stuttering involved acquiring resources such as relevant books, tapes and other information resources, as well as technological or mechanical appliance costs. A minority spent a considerable sum ($2,389) on attending stuttering related conferences and seminars (such as national and international stuttering meetings) and last, travel expenses, though not large over 5 years, was around $100 per annum. There were few factors found that significantly influenced spending. There was a non-significant trend for males to spend more than females across most areas of spending. Reasons for this possible gender imbalance in spending will need further research. Age was found to influence spending significantly, with younger participants spending more on speech treatments. This is not surprising given that most people who stutter began stuttering in childhood (Bloodstein & Bernstein-Ratner, 2008) and therefore, are more likely to seek help earlier than later. Presumably, younger adult people who stutter are also under more pressure to perform in the workforce, to strive for job promotion, and to have additional financial responsibilities such as rearing children. However, age was not found to influence significantly any other cost areas. Despite the above, it was interesting that a trend existed for older participants to spend more on alternative treatments for their stuttering. Perhaps this reflects a loss of confidence in standard speech treatments. This will need further research to determine whether this is the case. It will also be of interest in future research to study any interaction between age and severity of stuttering on spending patterns. While trends existed for the more severe participants to spend more on speech treatments, severity of stuttering was not found to influence spending significantly. Those who stuttered mildly (less than 4%SS) and those who stuttered moderately and above (4%SS or greater) were found to spend equally on their stuttering. Furthermore, there was no relationship evident when the severity cut-off score was raised to moderate to severe levels such as 10%SS. This is in contrast to general medical research (Rice, 1994) in which financial cost and severity of the condition are closely associated (Antonicelli et al., 2004; Cisternas et al., 2003; Godard, Chanez, Siraudin, Nicoloyannis, & Duru, 2001). For example, Antonicelli et al. (2004) found that the total annual cost per asthma patient was $720, $1,046, $1,535 and $3,328 for patients with intermittent, mild persistent, moderate persistent and severe persistent asthma, respectively. Cisternas et al. (2003) found the total annual costs of asthma averaged $4,912 while the total annual per-person costs

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of asthma were $2,646, $4,530 and $12,813 for those self-reporting mild, moderate and severe asthma, respectively. These costs were primarily hospital and pharmaceutically driven. In spite of the above, severity of stuttering has been found to be mildly predictive of treatment outcome and relapse (Craig, 1998; Iverach, Jones, et al., 2009), and while it seems counterintuitive that spending was not significantly influenced by the level of stuttering severity, prior research has rarely found significant associations between severity of stuttering and social or mental health functioning (Craig et al., 2009). It is important to note also that the health status of the participants was not related to spending, indicating that both the physically well and unwell are likely to spend similarly on their stuttering. Social anxiety was found to influence spending. Those with elevated social anxiety scores had significantly reduced expenditure in total financial costs, speech treatment costs and alternative treatment costs. Conversely, therefore, those with low levels of social anxiety spent significantly more on their stuttering. This result is not surprising, given that stuttering is associated with elevated social fears and anticipatory anxiety (Blumgart et al., 2010; Craig & Tran, 2006; Iverach, O’Brien, et al., 2009). High levels of anticipatory social anxiety will tend to reduce one’s willingness to interact socially, and raise the likelihood of social avoidance behavior (Bloodstein & Bernstein-Ratner, 2008). The findings of this study support this conclusion, confirming previous research (Hoffman, 2004; Menzies et al., 2008; Messenger et al., 2004), in that people with elevated social anxiety will be reluctant to mix socially, less likely therefore to seek help and thus spend less on the stuttering. This avoidance is likely to be driven by fears of being scrutinized by others (e.g. by the clinician or colleagues), or by fear they will stutter severely and so appear stupid and be severely embarrassed in front of others. The finding that social anxiety is elevated in those younger than 60 years has implications for the future management of the condition. Younger people who stutter have been found to be higher at risk of having elevated social anxiety compared to those aged 60 years or older (Blumgart et al., 2010). The reason for younger people having elevated social anxiety has not been clearly established, however, it is possible that with passing years, people can become resigned to living with a chronic condition like stuttering and its negative impact, and develop a level of adjustment to challenges they face. It is therefore imperative that people who stutter who present for treatment be provided with effective strategies to prevent the development of social anxiety.Possible limitations of this research include: (i) The exclusion of an analysis of indirect costs. Indirect costs would include income lost as a result of absenteeism from work or lost earnings as a result of stuttering. Collecting this socioeconomic data was beyond the scope of the research. However, it is conceded that a study addressing the indirect personal costs of stuttering would augment the present findings and be very helpful for predicting the impact of stuttering on the QOL of the individual and in the community. (ii) The retrospective nature of the study. All data in this study were estimated retrospectively and this could therefore have resulted in an under- or over-estimation of the financial costs associated with stuttering, as the data relied on the accuracy of the participants’ memory of monetary details over a 5-year period. However, in the absence of any alternative cost data, this retrospective financial data remains the best estimate available of the financial burden associated with stuttering. However, the authors have recently completed a prospective study of financial costs over a 5-month period in order to verify the findings from the current study. The same areas of spending were monitored in a sub-set of the 200 participants (N = 131) over a period of 5 months following each participant’s estimation of their spending in the prior 5 years. The results confirmed the retrospective cost data. Findings showed that the 131 spent an average of $817 (median of $456) over the 5 months. On the assumption that this rate of spending for 5 months would continue to occur over 5 years, then the prospective data confirmed that spending associated with stuttering would be at least as much as suggested by the retrospective spending data. This prospective rate of spending suggests that the retrospective data under-estimated the amount spent on stuttering. (iii) This is the first study in the field of stuttering that has attempted to estimate the personal financial costs associated with stuttering. Most cost studies in the social and medical sciences have been concerned with the financial costs of the particular condition to the community and not to the individual, particularly in terms of medication and inpatient/ outpatient clinic costs to the community (Begley, Famulari, & Annegers, 2000; Leigh et al., 2001; Rice, 1994; Smart, 2004; Stock et al., 2005). The community cost of stuttering remains an objective of future research. In conclusion, the financial costs of stuttering in combination with the increased risks of psychosocial morbidity associated with stuttering is likely to place a significant QOL burden upon people who stutter, in particular those

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who are younger. In combination with the finding that stuttering imposes a psychosocial burden similar to diabetes and coronary heart disease (Craig et al., 2009), continued pressure should be placed on health funding authorities to provide adequate financial support for access to effective treatments for stuttering, especially in adults. Improved funding would result in improved resources including treatment accessibility, and thus address the potential negative impact of stuttering on people’s lives. CONTINUING EDUCATION An investigation into the personal financial costs associated with stuttering Questions 1. Stuttering negatively impacts quality of life in which of the following domains: a. Psychological function only b. Emotional function only c. Psychological and social function d. Psychological, emotional and social function 2. The average total financial cost of stuttering over 5 years for adults who stutter was found to be: a. Around $500 b. Around $1000 c. Around $1500 d. Greater than $5000 3. What specific factor was found to influence financial costs of stuttering? a. Social anxiety b. Health risks c. Severity of stuttering d. Sex of the person 4. Which statement is true: a. 50% of the AWS reported their employment had been terminated due to their stuttering b. 25.5% of the AWS reported their employment had been terminated due to their stuttering c. 7.5% of the AWS reported their employment had been terminated due to their stuttering d. None of the AWS reported their employment had been terminated due to their stuttering 5. The FNE is what type of measure? a. A measure of state anxiety b. A measure of social anxiety c. An objective measure of social anxiety d. A subjective measure of quality of life References Allard, E. R., & Williams, D. F. (2008). Listeners’ perceptions of speech and language disorders. Journal of Communication Disorders, 41, 108–123. 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. Antonicelli, L., Bucca, C., Neri, M., De Benedetto, F., Sabbatani, P., Bonifazi, F., et al. (2004). Asthma severity and medical resource utilization. European Respiratory Journal, 23, 723–729. Australian Bureau of Statistics. (2006). Australia’s population estimates. Canberra: Australian Bureau of Statistics. September Quarter 2001–June Quarter 2006. Available from: http://www.abs.gov.au Bean, J. F., Vora, A., & Frontera, W. R. (2004). Benefits of exercise for community-dwelling older adults. Archives of Physical Medicine Rehabilitation, 85(Suppl. 3), S31–S42. Begley, C. E., Famulari, M., & Annegers, F. J. (2000). The cost of epilepsy in the US: An estimate from population-based clinical and survey data. Epilepsia, 41, 342–351. Berger-Schmitt, R., & Jankowitsch, B. (1999). Systems of Social Indicators and Social Reporting, EuReporting Working Paper No 1. Mannheim: Centre for Survey Research and Methodology.

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Journal of Consulting and Clinical Psychology, 33, 448–457. Wyrwich, K. W., & Wolinsky, D. (2000). Identifying meaningful intra-individual change standards for health-related quality of life measures. Journal of Evaluation in Clinical Practice, 6, 39–49. Yaruss, J. S., & Quesal, R. W. (2006). Overall assessment of the speaker’s experience of stuttering (OASES): Documenting multiple outcomes in stuttering treatment. Journal of Fluency Disorders, 31, 90–115. Yaruss, J. S., Quesal, R. W., Reeves, L., Molt, L. F., Kluetz, B., Caruso, A. J., et al. (2002). Speech treatment and support group experiences of people who participate in the National Stuttering Association. Journal of Fluency Disorders, 27, 115–134. Elaine Blumgart is an experienced speech pathologist currently completing her doctoral studies in the Rehabilitation Studies Unit, Northern Clinical School, Faculty of Medicine, The University of Sydney. Her doctoral studies concern the quality of life of people who stutter. Yvonne Tran is a senior research fellow in the Rehabilitation Studies Unit, Northern Clinical School, Faculty of Medicine, The University of Sydney, NSW Australia, and she is also a senior research fellow in the Health Technologies Centre, University of Technology, Sydney. Ashley Craig is a Professor in the Rehabilitation Studies Unit, Northern Clinical School, Faculty of Medicine, in The University of Sydney, NSW, Australia. He has been actively involved in the research and treatment of stuttering over the past 20 years. He is currently Editor of the Journal of Fluency Disorders.