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Journal of Clinical Practice in Speech-Language Pathology Journal of Clinical Practice in Speech-Language Patholo

Volume 13, Number 1 2011 Volume 18, Number 1 2016

Prediction and Prognosis

In this issue: Predicting potential for aphasia rehabilitation Patient expectations, credibility, and LSVT(r) LOUD outcomes A positive journey with aphasia Service delivery in an acute hospital setting Measuring social participation in adults Implications of language dominance in bilingual children Phonological skills in children with cleft lip and/or palate Prediction, prognosis, and genetics.

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Prediction and Prognosis

From the editor David Trembath

Contents

I t takes great knowledge and skill to identify and understand the nature of a person’s communication and/or swallowing difficulties. It takes great wisdom to understand the likely impact on his or her life, both now and into the future. For speech- language pathologists, such wisdom is gained through professional preparation studies, then enriched through evidence-based clinical practice and continuing professional development, and sculpted by interactions with clients and personal life experiences. Thus, when it comes to answering questions such as “will my child talk?”, “when can I expect my voice to improve?”, or “what does dementia mean for my partner and me?”, this wisdom enables us to look back, in order to see forward clearly. Across speech-language pathology practice areas, our ability to accurately predict likely outcomes for clients and to offer reliable

1 From the editor

2 Predicting potential for aphasia rehabilitation: The role of judgments of motivation – Deborah Hersh and Natalie Ciccone 7 Are patient expectations and treatment credibility related to outcomes from LSVT®LOUD? – Alexandra Callins, Annie Hill, and Deborah Theodoros 14 Enablers of a positive journey with primary progressive aphasia – Agnes Summers and Jade Cartwright 18 Speech pathology service delivery in the acute hospital setting – Dominique Ferreira, Natalie Ciccone, Asher Verheggen, and Erin Godecke 22 An investigation of social activities of neurologically healthy older adults and relevance of the Social Activities Checklist (SOCACT-2) – Rachel Morton, Bronwyn Davidson, and Madeline Cruice dominance for assessment of bilingual children’s language skills – Chris Brebner, Paul McCormack, and Susan Rickard Liow 33 Phonological awareness skills in children with cleft lip and/or palate – Lilian Anderson, Nerina Scarinci, and Helen Morris 40 Ethical conversations: Prediction and prognosis for SLPs in the age of human genome mapping – Helen Smith and Donna Dancer 28 Implications of language

prognoses is improving rapidly. In large part, progress is due to research moving beyond the identification, understanding, and treatment of communication and swallowing disorders, to also include a sophisticated examination of the factors that influence individual outcomes. In many ways, this evolution in science mirrors what clinicians have always known: that no one size fits all when it comes to the assessment and treatment of communication and swallowing disorders, nor how they influence the lives of the individual and their family, friends, and loved ones. In this issue, we present a series of articles in which authors have tackled issues associated with prediction and prognosis. Hersh and Ciccone consider the influence that clinicians’ judgements regarding client motivation may have on decision-making in aphasia rehabilitation. Callins, Hill, and Theodoris focus on how patient expectations and treatment credibility may impact on outcomes for clients with Parkinson’s disease receiving LSVT®LOUD. Anderson, Scarinci, and Morris examine factors associated with phonological awareness development in children with cleft lip and/or palate. Smith and Dancer discuss the ethical considerations associated with genetic testing and its relevance to current and future Speech- Language Pathology Practice. In related articles, Ferreira, Ciccone, Verheggen, and Godecke consider the impact that clinical decision-making during the early stages of an acquired communication and/or swallowing disorder can have on long term client outcomes. Morton, Davidson, and Cruice present the results of a study aimed at improving the way in which social participation – hence the real life impact of communication and swallowing disorders – is measured. But arguably, the most compelling insights presented in this issue belong to Summers, who shares her personal experience of living with primary progressive aphasia. Bringing together her rich and elaborate professional and personal life experiences, personal beliefs and values, the information she has gleaned from contact with students and clinicians, and an inspiring outlook on life, Summers reflects on the enablers of a positive journey. It takes great knowledge, skill, and wisdom to identify, understand, and predict the influence of communication and swallowing difficulties on a person’s life. It takes even greater courage and generosity to share those with, and for the benefit of, others in pursuit of the best life possible for all.

44 What’s the evidence? Tips for

accessing evidence from research – Sue McAllister

45 Webwords 54: Prognosis,

prediction, pitch, and paradox – Caroline Bowen

47 Top 10 resources: Prediction and prognosis – Wendy-Mae Rapson

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Prediction and Prognosis

Predicting potential for aphasia rehabilitation The role of judgments of motivation Deborah Hersh and Natalie Ciccone

This paper reviews the role of judgments of motivation by practitioners in predicting recovery post stroke and explores how speech-language pathologists (SLPs) judge motivation in their patients with aphasia. Qualitative data from two separate studies are used to show that judgments of motivation, within a complex mix of factors, are an important aspect of SLPs’ decision- making and may impact on how therapy is offered. We suggest that people with aphasia may be particularly disadvantaged by such judgments and that more discussion and reflection on the issue would be beneficial. T he ability to predict who might benefit from aphasia rehabilitation, who might not, and who is no longer likely to benefit further, is notoriously difficult, but speech-language pathologists (SLPs) have to make such decisions every day. Being able to predict outcomes provides important information for patients and families, for rehabilitation teams in their decisions about the best treatments to offer, and in longer term planning (Gialanella, Bertolinelli, Lissi, & Prometti, 2011). A body of research on recovery of aphasia post stroke suggests that aphasia severity, lesion size, and site have been shown as important for prognosis, while factors such as age, gender, handedness, education, and intelligence are less reliable indicators (Lazar & Antoniello, 2008; Pedersen, Jorgensen, Nakayama, Raaschou, & Olsen, 1995; Plowman, Hentz, & Ellis, 2012). Severe aphasia itself is a predictor of outcome, correlating with lower levels of function (Gialanella et al., 2011). Findings such as these are useful for clinicians, but their application is limited because they do not directly predict recovery in any particular individual patient and may not even be helpful in planning for particular groups of patients. For example, Nouwens et al. (2014) found significant improvements in functional communication in their patients with severe aphasia and suggested that therapy was beneficial for this group even in the acute phase. It is well known that aphasia recovery is remarkably variable (Lazar & Antoniello, 2008) and two people with quite similar lesions might have very different trajectories. To complicate matters further, neurocognitive functioning and personality traits, particularly the degree of positive

or negative affect, may also play a part in coping, level of effort and, ultimately, how well people with aphasia do in rehabilitation (Votruba, Rapport, Whitman, Johnson, & Langenecker, 2013). The presence of depression and low mood, common in people with aphasia post stroke, is also an important consideration, playing a major role in recovery (Code & Hermann, 2003). So if findings on recovery are insufficient to guide clinicians, how do SLPs predict rehabilitation potential in their patients? They regularly have to make complex clinical judgments to drive decision-making. In a recent study exploring the notion of rehabilitation potential in stroke, Burton, Horne, Woodward-Nutt, Bowen, & Tyrrell (2015) ran two focus groups with 12 health care professionals (six occupational therapists, four SLPs, one physiotherapist, and one rehabilitation assistant) and asked them about how they judged this notion. These participants described rehabilitation potential as “visible achievements of goals or outcomes over time” (p. 1957). In practice, they prioritised those who were improving or showing carry-over (even though some measures, such as the Barthel Index, were felt to be insensitive in picking up rehabilitation potential) and moved those who were not towards a maintenance track or less active program. If patients were judged as reaching a “plateau”, they were less likely to receive ongoing rehabilitation (an issue discussed previously by Hersh [1998] specifically in relation to aphasia). For these 12 participants, judgments of rehabilitation potential involved looking first at type of stroke and premorbid history, and then at psychological factors of mood, motivation, and attention. Motivation was associated with insight, pre- stroke memory skills, mental capacity, and attention but the authors noted the prominent role of clinical intuition and clinical experience in these judgments, suggesting they “may be less than reliable” (Burton et al., 2015, p. 1955). Considering that patients with aphasia are at risk for depression or low mood (Votruba et al., 2013), such patients may not make “visible achievements of goals” in the relatively short time allocated to rehabilitation, may find it harder to negotiate common goals with their practitioners (Rohde, Townley-O’Neill, Trendall, Worrall, & Cornwell, 2012), and may be compromised by their language deficits in their attempts to demonstrate motivation to their practitioner. Little has been written specifically about how SLPs make judgments of motivation in patients or clients with aphasia and what the implications might be for service provision. However, there is a helpful literature about the

Thisarticle has been peer- reviewed Keywords aphasia motivation predictionsof potentialfor recovery qualitative research rehabilitation speech- language pathology

Deborah Hersh (top) and Natalie Ciccone

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Methods Study 1 The data from the first study are derived from a larger study, carried out in Western Australia in 2011, that explored SLPs’ accounts and perceptions of their management decisions for people with aphasia in acute and rehabilitation settings. SLPs used a workbook, developed for the study, to record information about their management of a single person with aphasia (PWA) on their caseload. The SLPs recorded information about the individual’s medical history, the SLP goals they had for the individual, their intentions regarding the frequency with which they planned to see the person and information on each occasion of SLP service provided to the individual while they were on the SLPs’ caseload. The SLPs were asked to complete the workbook for the first person diagnosed with aphasia who was admitted to their caseload after they had consented to participate in the study. Upon completion of the workbook, the SLPs took part in an interview to confirm the details recorded in the workbook and explore points raised regarding their clinical decision making for the specific PWA. The interviews were transcribed verbatim. The current study reports on a subset of data drawn from the experiences of the eight SLPs who worked in acute hospital settings and is focused on their decision making around the goals they developed for their in-patients and the level of service delivery (length and frequency of sessions) they planned to provide for the individual with aphasia. The data is drawn from both the workbooks and the follow up interviews, analysed using thematic analysis (Braun & Clarke, 2006). A portion of the workbook data has been reported previously in Ciccone, Hersh, Armstrong, and Godecke (2013). Ethics approval for this research was granted through the Edith Cowan University HREC and the HRECs of the hospital involved in the study. Study 2 The second study (Hersh, 2003) was based on interview data with 30 SLPs collected as part of a doctoral study, analysed using a grounded theory methodology (Strauss & Corbin, 1998). Ethics approval for this research was granted through the Ethics Committee of Flinders Medical Centre, the University’s board for clinical applications in the School of Medicine, and the ethics committees of other employing institutions (three other hospitals, a rehabilitation centre, and two community health centres). One aspect of the interviews involved exploring the factors that clinicians considered influenced their decisions to keep patients or clients on in therapy or to discharge them. While a range of factors influenced decision-making, data reported for this current paper refers only to one ‘patient-specific factor’, that of motivation. All names used below from both studies are pseudonyms. Results Even though the data from these two studies were collected across states, nearly a decade apart by different researchers, and focused on clinical decisions across acute, rehabilitation and community settings, there were overlapping findings and themes (see Table 1). Motivation was considered as one of a cluster of factors influencing decisions, for example, relating to client, service-level, or wider contextual considerations. Examples of other client-level factors reported by Hersh (2003) were: age, severity of aphasia, health status, time post-onset, premorbid and current communication needs, language

role of motivation in stroke rehabilitation more broadly. Motivation is actually a poorly defined notion (Maclean & Pound, 2000), but it is often cited by clinicians as a critical factor in determining the outcome of stroke rehabilitation generally (Becker & Kaufman, 1995; Gold, 1983; Lewinter & Mikkelsen, 1995; Maclean & Pound, 2000). This has also been reflected in some aphasia-related research (Lendrem, 1994; Mackenzie et al., 1993). Becker and Kaufman (1995) reported that judgments of patient motivation were a key indicator of rehabilitation potential in the eyes of stroke clinicians. Maclean and Pound (2000) reached a similar conclusion. They highlighted the dangers of seeing motivation only as a personal trait and then “moralising” about worthiness and character in those where motivation was judged to be lacking. They cited a number of studies that suggested that: “…a moralistic approach within rehabilitation settings can have deleterious effects on patient care, and also on the quality of patients’ lives after discharge” (p. 503). In a study involving interviews with 32 members of a multidisciplinary team (although only including 2 SLPs) Maclean, Pound, Wolfe, and Rudd (2002) found that: The criteria professionals use to recognize motivation have been shown to have blurred boundaries. “Motivated” patients are expected to be proactive, but this proactivity must never manifest itself in a strong- willed rejection of therapy. Similarly, motivated patients are expected to be compliant, but this compliance must never be the total compliance associated with a lack of “intrinsic”motivation. In effect, patients walk a fine line regarding how their behavior is viewed; a delicate balance has to be struck between compliance and proactivity if the patient is to avoid being seen as unmotivated and therefore receiving a potentially damaging label. (p. 448) Professional expectations about motivation can become blinkered, for example, varying with the age of the patient (Nicholas, Rybarczyk, Meyer, Lacey, Haut, & Kemp, 1998) and can be insensitive to the sheer effort patients are expected to make in order to be regarded as motivated. Meier and Purtillo (1994) warned against labelling people as “poorly motivated”when they “may not understand the effort, pain, repetition, boredom and altered body use that is required” (p. 365). Finally, adding further to this complexity is the issue of post stroke fatigue. This may occur with depression but certainly does not have to, and therefore may not respond to antidepressant medication. It is estimated to occur in around 40% of people post stroke (Lynch et al., 2007) and may also interfere with people’s ability to manage the work demanded in rehabilitation (Morley, Jackson, & Mead, 2005). The presence of fatigue has obvious implications for the way in which clinicians predict rehabilitation potential, and it is not difficult to imagine that patients suffering from post-stroke fatigue could be viewed as too poorly motivated to participate in therapy. In the light of this review, and the particular issues facing people with aphasia, we suggest that the issue of how judgments of motivation might impact on predictions of potential in aphasia rehabilitation deserve more attention. In this paper, we draw on original data from two separate studies carried out by each of the authors to highlight examples of how judgments of motivation by SLPs influence decision-making and management of people with aphasia in post-stroke rehabilitation.

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Table 1 summarises the key broad themes found in the two sets of data and illustrative quotes.

Study 1 [Frequency]Dependsonpt’sstatusinterms ofalertness,fatigue,availability(i.e.,other alliedhealthorinvestigations),motivation, compliancewithTxetc.(Georgia,workbook) I was thinkingoptimally I wouldhave beenseeinghimtwicedailybecausehe wasalotmorealertandreallyinterested. (Belinda, interview) …then you look at leaving packages andgroupsandthingslikethat.(Belinda, interview) Acutept….motivated,insightful+good rehab potential. (Emily, workbook) If I know they aremotivated and can, andhavegoodfamilysupport,trytoget materialsouttothemforfamilytosupport orgivethemstrategies.(Sophie,interview)

Themes Judgingmotivation anddecisionsabout what to offer

Study 2 Yeah,themotivationoftheindividual...iftheyaredesperatelykeenandyou knowtheyareputtingalltheireffortintotheworkyouaregivingthemandit liftsthemtobeabletocomeandhavethatchallengeandworkonitandsee their progress, then that’s a big thing. (Ros) Isupposeitishoweagerpeopleareinthetherapysessionorhow...whether theypracticeornot,whetherthefamiliesareinvolvedor...alotofitispretty subtle. (Jane) …reallyit’stodowiththeperson’sownmotivationandbymotivation,I meanmotivationtoattend,motivationtodotheworkthatwehaveagreedon together,toworkthroughgoalsandtoworktowardsgoals.(Leanne) …generallyifpeopleweremakingchange,weremotivatedtomakechange andcommittedtomakechangeandIstillhaveasenseofenthusiasm fromthemandtheircarersaboutmakingchange,thenIwouldplugaway [persevere]. (Murray) Socontinuingtooffertherapywouldbebasedonmotivationoftheclientand hisfamilyorherfamily.AlsoIthinkapowerfulmotivatorallroundisevidence ofimprovement,youknow,ifit’sworking,youkeepdoingit.You’renotgoing to stop. (Rachel) [Youlookfor]progressandtheiractiveinteraction.Andyouknowsome peopleareverypassive.Theyjustsitthereandletyoutherapythemand yougetnowherereally.Looksgoodonpaperandthatisaboutasfaras yougo,sopeoplelikethatIwouldbedischargingintherelativelyshort term. (Ros) …ifyougetthevibesfromapatientthatthey’renotterriblyinterestedin comingorifthey’relateallthetimeoriftheydon’tturnupandtheydon’tlet youknow…likeyouthink,“well,whybother?”You’remorelikelytomaybe discharge them a bit sooner. (Felicity) Ithinktheirattitude.Obviouslyifthey’realittlebrighter,senseofhumour,you know,workingwell,they’vegothomesupport,they’reactuallydoingsome activepracticeofsomeform,that’salwaysbetter…andhelpsthetherapist. Andifpeoplearereallydepressed,they’vegotnohomesupport…that makesitalothardertomotivatethemandtosetgoalstoo…Soittendsto probably make you discharge somebody. (Erica) Differenttherapistscouldachievedifferentthingsbecauseofthechemistry intermsofmotivation…andthat’snotsayinganytherapistsarebetter orworsethananybodyelse.It’sjustthatweknowthatthatexists.We acknowledge that within the profession. (Belinda) Iguessitishowconnectedtheyarewithyouinthatpartofthesessionwith whatyouaredoing.Imeantherearesomeactivitiesyoudowithsomeand theyarejust,theyareenjoyingitbuttheyarealsoreallyfiring,theyarereally trying,theyarereallyobviouslystrivinginsomewaytoachievethisthingthat ismotivatingforthem.Andinotherthingstheyarejustdoingalmostarote responseandyoucanseetheyareactuallydoingitbecauseyouhaveasked themtodoitratherthanitbeingintrinsicallymotivatingandmyparticular bias and passion is intrinsic motivation and not extrinsic… (Celia) There’stimesI’vehadquiteafewpeoplecomethrough…they’renotreally highlymotivatedassuchand,youknow,andit’shardworkforthemandit’s notnecessarilytheirthingbutinperseveringandgettinganoutcomeand helpingthemgetthroughthatadjustmenttime,thenitcanbeworththat initial push. So I don’t do it by motivation. (Angela) Thereissomuch‘mystique’surroundingallofthis.Imeanpeoplearetold “wellyouareveryluckytobeinthisprogramandyou’vegottograbitwhile it’savailable”…tryingtokeeppeoplemotivatedtowardstheirhalforone hourtherapysessionswhentheyhavegotallthisotherstuff[medicaland emotionalissues].Andmeanwhilethey’vegottheirfamiliessaying“you’ve gottodoit,you’vegottodoit,comeon,comeon”,almostbarracking families…somepeoplejustgetreallyanxiousaboutallofthisandfeel there’s a great pressure... (Murray)

Motivation, goal setting,andtherapy options

Family influences on judgments of motivation

Motivation and discharge

Influences of motivation on the therapeutic interaction

Ifthepatient’sreallymotivatedithelpsa lotintherapyalsobecauseyougetthat, youtakesomeofthatenergyandgiveit back to them. (Sophie, interview).

Recognising the limitsofjudgments of motivation

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and cultural diversity, and family supports. This list is of interest considering the evidence cited above that only stroke severity, lesion size, and location have been shown in the research literature to be predictive for recovery. In practice, however, the clinicians interviewed in both studies felt that a much wider range of issues was important to consider. Motivation was frequently mentioned as a critical factor in decisions about potential to benefit from therapy, how much therapy to offer, and in discharge decisions. Motivation was very closely tied to improvement, enthusiasm, and the ability to set goals and to do the required work to support reaching those goals. Being motivated and making change were viewed as cyclical, and if people were judged as lacking motivation, they were not retained for therapy. There was some suggestion in Study 1 that people judged to be motivated would be seen more frequently in the acute setting, and suggestions from both studies that client motivation impacted on the quality of the interaction in that it was more satisfying to work with someone who was stimulating, interested, and enthusiastic. The degree to which families were viewed as motivated to support their family member with aphasia was also reported as important for a successful outcome. Interestingly, some SLPs commented on potentially unreasonable pressures on their clients to remain motivated at a stressful time when other physical and emotional concerns might be overwhelming. Discussion The data presented in this paper confirms that SLPs make judgments about motivation in their patients with aphasia (along with many other factors), that these judgments influence what is done in therapy, and for how long it is offered. SLPs do consider motivation in their predictions about someone’s potential in rehabilitation. Having motivation appears to be an expected behaviour in a rehabilitation context that requires client participation and enthusiasm for therapeutic success (Gold, 1983). Clearly, this is within a context where people with aphasia may not fully understand their own condition, the nature of their treatment, or expectations for rehabilitation. They may be facing considerable communicative, physical, cognitive, psychological, perceptual, and emotional changes including mood issues and fatigue, which together may impact on their ability to demonstrate the energy and enthusiasm their SLPs are looking for. Moreover, anxious family members may not be aware of how crucial their contribution might be to the overall impression of motivation for the therapist. These are very subtle issues; clinical judgments which are difficult to explain or make explicit. And yet, they contribute to the decision-making within rehabilitation. Of interest also are the comments in our results about motivated patients leaving SLPs feeling energized. This reciprocity of relationship has been raised by Kayes, Mudge, Bright, and McPherson (2015) and Bright, Kayes, Worrall, and McPherson (2015) in their discussion of engagement in rehabilitation. These authors note that engagement, which overlaps with the concept of motivation discussed here, can be viewed both as a patient state but also as a co-constructed process reflecting the quality of the relationship between the clinician and patient. Effectively, the work by Kayes et al. (2015) and Bright et al. (2015) suggests that a therapist who fails to engage a patient well (perhaps because of ineffective goal setting, poorly chosen therapy tasks and materials, or insufficient rapport and relationship building) will perhaps then judge that patient as

unmotivated. Our participants in this study have judged such a lack of motivation through a range of behaviours including non-attendance, passivity, or not completing home practice. We need to recognize that judgments of motivation may perhaps be about behaviours which reflect patient satisfaction with therapy – although within a particularly complex context of post-stroke rehabilitation. SLPs need to step back and consider how judgments of motivation might be impacting on their practice. We suggest that, in the context of aphasia rehabilitation, this is particularly crucial because language impairments can have such a profound impact on patients’ ability to make sense of therapy and of rehabilitation as a whole and, along with all the other variables discussed in this paper, could impact on how motivated they appear to be. Aphasia rehabilitation services are often time and resource limited – so there is certainly pressure to direct such resources towards the most benefit. However, how to make decisions regarding the potential to benefit from therapy at an individual level remains a difficult issue – but one which would be assisted by further discussion and reflection. References Becker, G., & Kaufman, S. (1995). Managing an uncertain illness trajectory in old age: Patients’ and physicians’ views of stroke. Medical Anthropology Quarterly, 9, 165–187. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. Bright, F.A.S., Kayes, N.M., Worrall, L., & McPherson, K.M. (2015). A conceptual review of engagement in healthcare and rehabilitation. Disability and Rehabilitation, 37(8), 643–654. Burton, C.R., Horne, M., Woodward-Nutt, K., Bowen, A., & Tyrrell, P. (2015). What is rehabilitation potential? Development of a theoretical model through the accounts of healthcare professionals working in stroke rehabilitation services. Disability and Rehabilitation, 37(21), 1955–1960. DOI: 10.3109/09638288.2014.991454 Ciccone, N., Armstrong, E., Hersh, D., & Godecke, E. (2013). Speech pathologists’ clinical decision making in the provision of services to people with aphasia. International Journal of Stroke, 8(Suppl1), 44. Code, C., & Herrmann, M. (2003). The relevance of emotional and psychosocial factors in aphasia to rehabilitation. Neuropsychological Rehabilitation: An International Journal, 13(1–2), 109–132. Gialanella, B., Bertolinelli, M., Lissi, M., & Prometti, P. (2011). Predicting outcome after stroke: The role of aphasia. Disability and Rehabilitation, 33, 122–129. Gold, S. J. (1983). Getting well: impression management as stroke rehabilitation. Qualitative Sociology, 6, 238–254. Hersh, D. (1998). Beyond the “plateau”: Discharge dilemmas in chronic aphasia. Aphasiology, 12(3), 207–218. Hersh, D. (2003). Experiences of treatment termination in chronic aphasia. (Unpublished PhD Thesis). Flinders University, Adelaide. Kayes, N., Mudge, S., Bright, F. A. S., & McPherson, K. (2015). Whose behavior matters? Rethinking practitioner behaviour and its influence on rehabilitation outcomes. In K. McPherson, B. E. Gibson, & A. Leplège. Rethinking rehabilitation: Theory and practice, (pp. 249–271). Boca Raton, FL: CRC Press. Lazar, R. M. & Antoniello, D. (2008). Variability in recovery from aphasia. Current Neurology and Neuroscience Reports, 8, 497–502.

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DeborahHersh,PhD,FSPAA,CPSP,isassociateprofessorinspeech pathologyatEdithCowanUniversity,Perth,WesternAustraliaand adjunctseniorlecturerinpublichealthatFlindersUniversity,South Australia. Natalie Ciccone, PhD, is associate professor and coursecoordinatorinthespeechpathologyprogramandassociate deanofalliedhealthintheSchoolofMedicalandHealthSciences at Edith Cowan University. Correspondence to: Deborah Hersh, SpeechPathology,SchoolofMedicalandHealthSciences,Edith Cowan University. EdithCowanUniversity,SpeechPathology,SMHS,270Joondalup Drive, Joondalup, Perth, WA 6027, Australia. Votruba, K. L., Rapport, L. J., Whitman, R. D., Johnson, A., & Langenecker, S. (2013). Personality differences among patients with chronic aphasia predict improvement in speech-language therapy. Topics in Stroke Rehabilitation, 20(5), 421–431. Pederson, P. M., Jorgensen, J. S., Nakayama, J., Raaschou, H. O. & Olsen, T. S. (1995). Aphasia in acute stroke: incidence, determinants, and recovery. Annals of Neurology, 38, 659–666. Plowman, E., Hentz, B., & Ellis, C. (2012). Post-stroke aphasia prognosis: A review of patient-related and stroke- related factors. Journal of Evaluation in Clinical Practice, 18, 689–694. Rohde, A., Townley-O’Neill, K., Trendall, K., Worrall, L., & Cornwell, P. (2012). A comparison of client and therapist goals for people with aphasia: A qualitative exploratory study, Aphasiology, 26(10), 1298–1315. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage.

Lendrem, W. (1994). Clinical decision analysis and the selection of aphasic patients for active treatment (PhD thesis). University of Newcastle, United Kingdom. Lewinter, M., & Mikkelsen, S. (1995). Therapists and the rehabilitation process after stroke. Disability and Rehabilitation, 17, 211–216. Lynch, J., Mead, G., Greig, C., Young, A., Lewis, S., & Sharpe, M. (2007). Fatigue after stroke: The development and evaluation of a case definition. Journal of Psychosomatic Research, 63, 539–544. Mackenzie, C., Le May, M., Lendrem, W., McGuirk, E., Marshall, J., & Rossiter, D. (1993). A survey of aphasia services in the United Kingdom. European Journal of Disorders of Communication, 28, 43–61. Maclean, N,. & Pound, P. (2000). A critical review of the concept of patient motivation in the literature on physical rehabilitation. Social Science and Medicine, 50, 495–506. Maclean, N., Pound, P., Wolfe, C., & Rudd, A. (2002). The concept of patient motivation: A qualitative analysis of stroke professionals’ attitudes. Stroke, 33, 444–448. Meier, R. H., & Purtillo, R. B. (1994) Ethical issues and the patient–provider relationship. American Journal of Physical Medicine and Rehabilitation, 73, 365–366. Morley, W., Jackson, K., & Mead, G. E. (2005). Post- stroke fatigue: An important yet neglected symptom [letter]. Age and Ageing, 34, 313. Nicholas, J. J., Rybarczyk, B., Meyer, P. M., Lacey, R., Haut, A., & Kemp, P. J. (1998). Rehabilitation staff perceptions of characteristics of geriatric rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 79, 1277–1284. Nouwens, F., de Jong-Hagelstein, M., de Lau, L. M. L., Dippel, D. W. J., Koudstaal, P. J., van de Sandt- Koenderman, W. M. E., & Visch-Brink E. G. (2014). Severity of aphasia and recovery after treatment in patients with stroke, Aphasiology, 28(10), 1168–1177.

phone: +61 8 6304 2563. email: d.hersh@ecu.edu.au

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Journal of Clinical Practice in Speech-Language Pathology

Prediction and Prognosis

Are patient expectations and treatment credibility related to outcomes from LSVT ® LOUD? Alexandra Callins, Annie Hill, and Deborah Theodoros

Research in the fields of psychotherapy and rehabilitation has established an association between ratings of treatment credibility and patient expectations, and treatment outcomes. However, little is known about the relationship between credibility and expectation and the outcomes of speech- language pathology treatments. This study aimed to examine the associations between treatment credibility and patient expectations and the outcomes for people with Parkingson’s disease undergoing LSVT ® LOUD for hypokinetic dysarthria. The study also sought to explore the influence of participant variables on treatment credibility and patient expectations. Forty-nine participants completed a credibility and expectancy questionnaire prior to treatment. The treatment outcome measures included the mean change pre- to post-treatment on the total score of the Dysarthria Impact Profile and vocal sound pressure level during a monologue task. Correlation statistics revealed only one fair correlation between treatment credibility and the Dysarthria Impact Profile total score change. The findings support LSVT ® LOUD as an efficacious treatment for participants with hypokinetic dysarthria as substantial improvements were made to their speech, regardless of their perceptions of treatment credibility, expectations, and other participant factors. P arkinson’s disease (PD) is a neurodegenerative disorder, characterised by resting tremor, rigidity, bradykinesia, gait disturbance, and postural instability (Olanow & Tatton, 1999). During the progression of PD, hypokinetic dysarthria develops in up to 90% of people (Duffy, 2005). The speech disorder is characterised primarily by reduced volume, monotonous pitch and loudness, a harsh and breathy vocal quality, imprecise articulation, and, in some cases, disordered speech

rate (Duffy). The communication changes that present in PD may directly impact upon social skills and cause apprehension and embarrassment for people with PD during social interactions (Miller, Noble, Jones, & Burn, 2006). Furthermore, communication deficits can place limitations on participation in the family and society in general and may impact upon an individual’s self-concept (Miller et al., 2006). The Lee Silverman Voice Treatment (LSVT ® LOUD) is an evidence-based treatment for hypokinetic dysarthria associated with idiopathic PD (Fox, Ebersbach, Ramig, & Sapir, 2012). Information on the efficacy of LSVT ® LOUD has been published extensively (Atkinson-Clement, Sadat & Pinto, 2015; Ramig, Countryman, Thompson, & Horii, 1995; Ramig, Sapir, Countryman, et al., 2001; Ramig, Sapir, Fox, & Countryman, 2001; Wight & Miller, 2015). This program targets increased vocal loudness, increased effort, sensory calibration of loudness and effort, and self-cueing in order to improve speech intelligibility and maintain improvements long-term (Fox et al., 2012). This intensive program was developed around some of the principles that promote activity-dependent neuroplasticity, such as specificity, intensity, repetition, and saliency of treatment tasks (Fox et al.). Enhanced speech intelligibility can be expected due to increased loudness, increased effort across the speech mechanism, resulting in greater orofacial movements, tongue strength and mobility, and more precise articulation (Ward, Theodoros, Murdoch, & Silburn, 2000). Improvements in facial expression have also been noted by Spielman, Borod, and Ramig (2003) and some components of the oral and pharyngeal phases of swallowing were observed by El Sharkawi et al. (2002). It has been postulated that during some types of rehabilitation, such as psychotherapy, a person’s response to a treatment may be influenced by his or her expectations and belief about the credibility of the treatment (Smeets et al., 2008). Outcome expectancy is a person’s expectation for a successful rehabilitation outcome, assuming he or she makes the required effort (Geelen & Soons, 1996). It has been suggested that most psychotherapies are inextricably associated with the manipulation and adjustment of patient expectations (Greenberg, Constantino, & Bruce, 2006). The concept of treatment credibility is also important in the rehabilitation process. Treatment credibility refers to how believable, convincing, and logical the treatment seems to the patient (Smeets et al., 2008). The association between patient expectations and credibility and their treatment outcomes has been

Keywords credibility, expectation LSVT®LOUD Parkinson’s

disease speech-

language pathology

Thisarticle has been peer- reviewed

Alexandra Callins (top), Annie Hill (centre), and Deborah Theodoros

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explored widely in the field of psychotherapy (Constantino, Arnkoff, Glass, Ametrano, & Smith, 2011). Although not as extensive, there has also been research in the fields of occupational and physical rehabilitation examining patient expectations and treatment credibility. In the area of pain treatment, a study by Goossens, Vlaeyen, Hidding, Kole-Snijders, and Evers (2005) explored how patients’ initial beliefs about the success of a provided treatment was linked to their outcomes. Findings suggested that those who believed the treatment would assist them in managing pain reported better pain coping and control, less catastrophising thoughts and negative emotions, and an overall higher health-related quality of life. Harvey, Adams, Chu, Batty, and Barratt (2012) discussed the importance of having similar therapist and patient expectations, in the context of physiotherapy for spinal cord injuries. Unreasonably high patient expectations were more likely to be associated with depression and a lower quality of life when their expectations were not met (Harvey et al., 2012). Another physiotherapy study found that higher expectations and larger changes in shoulder function were able to significantly predict expectancy fulfilment (O’Malley, Roddey, Gartsman, & Karon, 2004). Patient expectations overall (across the domains of pain, physical functioning, and social function) have been shown to positively correlate (although with borderline significance) with improved global functioning for patients post-surgery for spinal lumbar stenosis (Iversen, Daltroy, Fossel, & Katz, 1998). Patients with higher pre-operative expectations improved more than those with moderate to low expectations. However, some literature has been unable to establish convincing evidence for the association between patient expectations and treatment outcomes. This includes studies from exercise physiology (Perkins, Waters, Baum, & Basen-Engquist, 2009) and an occupational therapy study which examined upper-extremity motor function (Prager, Birkenmeier, & Lang, 2011). Treatment credibility has been found to play less of a role in predicting outcomes (Borkovec & Costello, 1993). In a study exploring chronic back pain treatment, the relationships between both patient expectations and credibility of three different treatment groups were considered (Smeets et al., 2008). It was found that only expectations were associated with patients’ self-reported disability and global perceived effect post-treatment. However, relationships were found between patients’ treatment satisfaction and both patient expectations and treatment credibility. Current research findings in this topic area remain inconclusive with respect to how patient perceptions of treatment credibility relate to the outcomes of therapies. To date, the association between patient expectations and treatment credibility, and clinical outcomes has not been investigated in the field of speech-language pathology. Research into such factors has the potential to further inform the rehabilitation process for clients with communication disorders. The primary aim of this study was to determine if patient expectations and treatment credibility were associated with the outcomes of an intensive treatment (LSVT ® LOUD) for hypokinetic dysarthria associated with PD. This study is of particular interest as LSVT ® LOUD is evidence based and well recognised for its efficacy in the treatment of the speech disorder in PD, and so treatment credibility and patient expectations may be high. It was hypothesised that treatment credibility and patient expectations would predict treatment outcomes.

The secondary aim considered other participant variables such as age, time post onset of PD, severity of dysarthria, and stage of PD, and their association with both patient expectations and treatment credibility. Participant variables were hypothesised to be associated with treatment credibility and patient expectations. Method Study design The current study used a subset of data from a non- inferiority randomised controlled trial involving three groups of participants. The non-inferiority randomised controlled trial was conducted between one group of participants who received the LSVT ® LOUD program face-to-face at the University of Queensland and another group who received the same treatment delivered via telerehabilitation in their homes within the Brisbane City Council boundary. A third group of participants residing outside this boundary, but within a 2-hour drive of Brisbane, received LSVT ® LOUD via telerehabilitation. Ethical clearance was obtained from the Behavioural and Social Sciences Ethical Review Committee of The University of Queensland, Australia and all participants provided informed consent prior to their involvement in the study. Participants Forty-nine people with PD and hypokinetic dysarthria provided data on treatment credibility and expectancy. The average age of the participants was 70.55 years and included 34 males (mean age 71.47 years; age range 55.92–87.58 years) and 15 females (mean age 68.48 years; age range 50.5–84.7 years). Participants presented with hypokinetic dysarthria of which 38 were rated as mild, 9 were rated as moderate, and 2 were rated as severe. The level of speech severity was rated by a SLP with 20 years’ experience in the management of people with PD. Ratings were based on the sound pressure level (SPL) of voice during conversation prior to treatment and a perceptual rating of speech intelligibility during a monologue task prior to treatment (Mild = > 65dB in conversation and/or mildly reduced speech intelligibility; Moderate = 60–65dB in conversation and/or mild to moderate reduction in speech intelligibility; Severe = < 65dB in conversation and moderate to severe reduction in speech intelligibility).The mean stage of PD according to the Hoehn and Yahr Scale (Hoehn & Yahr, 1967) was 1.96 (range 1 to 5). The mean time post onset of PD for the cohort was 4.36 years (range 6 months to 15 years). See Table 1 for further participant characteristics. Participants were included in the study if they were English speaking, demonstrated features of hypokinetic dysarthria, presented with a cognitive status that was adequate to participate in assessment tasks as judged by the researcher, and the participants reported that they were on a stable drug regimen. Participants were excluded if there was a co-existing neurological disorder other than PD, a co-existing speech disturbance other than that associated with PD, previous participation in a LSVT ® LOUD program, a respiratory dysfunction unrelated to PD, a positive history of alcohol abuse and/or dementia, and/or poorly aided vision or hearing. Outcome measures The assessment battery included perceptual, acoustic, and quality-of-life measures together with participants’ expectancy and perceived credibility ratings of the speech

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Table 1. Descriptive characteristics for participants who received the LSVT ® LOUD Group according tomode of delivery of LSVT ® LOUD Gender Mean age (years) (SD) Meantimepostonset of PD (years) (SD)

Dysarthriaseverity rating

Mean stage of PD (SD)

2 (.95)

Face-to-facemetro(n=15) Male = 10 Female = 5

71.23 (9.43)

3.91 (2.94)

Mild = 12 Moderate = 2 Severe = 1 Mild = 11 Moderate = 2 Severe = 1 Mild = 15 Moderate = 5 Severe = 0

1.57 (.39)

Telerehabilitation Metro (n = 14)

Male = 10 Female = 4

71.76 (8.05)

4.36 (3.88)

2.2 (1.11)

Telerehabilitation Rural (n =20)

Male = 14 Female = 6

69.19 (8.82)

4.7 (3.03)

Note. SD = Standard deviation

disagree responses receive a score of 5 and strongly agree responses receive a score of 1. The DIP was completed once prior to, and again post-treatment. The DIP total score was calculated from the sum of the scores from each section. Speech treatment The participants were treated by certified clinicians using the LSVT ® LOUD program of 16 one-hour sessions, four days a week, for four weeks (Trail et al., 2005). Homework and carry-over tasks were tailored to facilitate each participants’motivation, engagement and to continue to drive the neuroplasticity changes activated by the treatment (Fox et al., 2012). Data analysis Data analysis was conducted using IBM SPSS Statistics Version 22. Comparison of treatment outcomes (dB level in monologue and DIP total score) between the three groups using a linear mixed model indicated that there was no significant differences between the groups with respect to group-time interaction on these measures (Monologue: F = 0.234; p = .791; DIP total score: F = 0.089; p = .915). This finding allowed for the pooling of all group data for subsequent data analyses. Paired t-tests were completed on the pooled data (n = 49), and were used to establish any change to dB level in monologue, from baseline to the completion of treatment. A paired t-test was also used to compare the mean of the DIP total score, pre- and post-treatment. To examine the relationship between mean expectancy and average credibility with the differences in dB level in monologue and the DIP total scores from pre- to post- intervention, nonparametric Spearman rank correlations were performed. Secondary analyses were conducted using Spearman rank correlation to examine the relationship between credibility and expectancy with the participant variables age, time post onset of PD, severity of dysarthria and stage of PD. For this analysis, it was necessary to include two participants with a severe dysarthria in the moderate group as the analysis could not be completed on a group of two. Significance for correlation coefficients was set at p < .05. The following criteria were used to interpret the magnitude of correlation coefficients: coefficients of .25 were considered low, coefficients of .26 to .50 were considered fair, coefficients of .51 to .75 were considered good, and coefficients of >.75 were considered excellent (Portney &Watkins, 2000).

treatment itself. The current study will report on the results of patient expectations and treatment credibility data, with reference to the primary clinical outcome measure (difference in dB level in monologue), and one quality-of-life measure (Dysarthria Impact Profile [DIP] total score difference). In order to determine patient expectations of the intervention and treatment credibility, an expectation and credibility questionnaire was administered prior to treatment. The participants completed this questionnaire independently after having read the participant information sheet, which outlined the intervention but also indicated that they may not directly benefit from the intervention. The questionnaire was adapted from the Credibility and Expectations Questionnaire (CEQ; Devilly & Borkovek, 2000) and comprised of two sets of questions. Adaptation to the questionnaire involved the substitution of the phrase ‘trauma symptoms’ with ‘speech difficulties’ in two questions. Questions 1–3 from set I and question 1 from set II assessed the perception of treatment credibility on a 9-point scale, with 0 representing not at all/logical/ useful/confident, and 9 representing very much/logical/ useful/confident. The mean treatment credibility score for the group was derived from the average score of these four questions. Question 4 from set I and question 2 from set II related to patients’ expectations of the treatment. These questions were rated on a 0–100% scale. The mean expectation score for the group was derived from the average score of these two questions. The primary outcome measure of the effectiveness of the speech treatment was determined by having each participant talk about a familiar topic for a minute and a half. This monologue was recorded and the average dB level of the participant’s speech was measured using calibrated software. This outcome measure is a standard measure of vocal volume in numerous studies relating to LSVT®LOUD (Howell, Tripoliti, & Pring, 2009; Ramig et al., 1995). This assessment was administered twice prior to and after treatment, with a 2-day interval between assessments. The DIP explores the psychosocial impact of acquired dysarthria from the speaker’s perspective. The DIP consists of four sections with a total of 48 statements (Walshe, Peach, & Miller, 2009). The person with dysarthria rates each statement on a 5-point scale from strongly agree to strongly disagree. There are positively worded statements where strongly agree responses receive a score of 5 and strongly disagree responses receive a score of 1. Negatively worded statements are the reverse. Strongly

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