Measuring Life Participation, Communicative

Perspectives of the ASHA Special Interest Groups SIG 2, Vol. 3(Part 1), 2018, Copyright © 2018 American Speech-Language-Hearing Association

Measuring Life Participation, Communicative Confidence, Language, and Cognition in People With Aphasia Hsinhuei Sheen Chiou Speech, Hearing & Rehabilitation Services, Minnesota State University Mankato Mankato, MN

Vickie Y. Yu Department of Communication Disorders and Sciences, California State University Northridge Northridge, CA Disclosures Financial: Hsinhuei Sheen Chiou has no relevant financial interests to disclose. Vickie Y. Yu has no relevant financial interests to disclose. Nonfinancial: Hsinhuei Sheen Chiou has no relevant nonfinancial interests to disclose. Vickie Y. Yu has no relevant nonfinancial interests to disclose. This study investigated change in life participation in people with aphasia (PWA) before and after a stroke from their perspectives. Language, cognitive, and communicative confidence factors that may affect PWA’s life participation outcomes were examined. Thirty-three adults with chronic aphasia (mild to very severe) completed three aphasia-friendly patient-reported measures: two versions of the Assessment for Living with Aphasia–Revised (Kagan et al., 2014) for assessing life participation, and the Communication Confidence Rating Scale for Aphasia (Babbitt, Heinemann, Semik, & Cherney, 2011) for assessing and communicative confidence); and two impairment-based standardized language (Western Aphasia Battery– Revised; Kertesz, 2006) and cognitive (Cognitive Linguistic Quick Test; Helm-Estabrooks, 2001) measures. Statistical analyses included descriptive statistics, paired sample t tests, one-way analysis of variance, and Pearson correlation. The results indicated that living with aphasia impacts aspects of life participation concerning quality of life, including communication difficulties, reducing participation at home and community, increasing environmental barriers, and negatively impacting personal attitude. Independent of aphasia severity, it was found that PWA’s perception of their own life is affected by their cognitive ability and communicative confidence level. In addition, the importance of aphasia-friendly, patient-reported measures and cognitive evaluation was discussed. Aphasia rehabilitation has shifted in focus from traditional language impairment treatments toward ecologically valid patient-reported outcomes (de Riesthal & Ross, 2015). Patient-centered measures evaluate rehabilitation outcomes that matter to patients. Traditionally, impaired-based measures have been used by speech-language pathologists (SLPs) as outcome tools to document the benefits of intervention for people with aphasia (PWA) and to provide an objective view of an individual’s communication function (Irwin, 2012; Ross, 2006). Although these impaired-based language measures (e.g., Western Aphasia Battery–Revised [WAB-R]; Kertesz, 2006) provide information on strengths and weaknesses in language abilities to help develop an impairment diagnosis, it has been recognized that these outcomes often cannot adequately capture subjective real-life difficulties encountered by PWA (Irwin, 2012). Life participation, which describes everyday aspects of life, is becoming the focus of rehabilitation (Rao, 2015; Worrall & Wallace, 2015). The most appropriate people for judging meaningful changes in life participation are PWA themselves (Kagan et al., 2008; Worrall et al., 2011). Hilari, Needle, and Harrison (2012) reviewed 14 research reports to examine potential factors affecting PWA’s health-related quality of life (QoL) and identified emotional distress, aphasia severity and communication disability, activity limitations, other medical problems, and social/family support

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to be major factors in determining QoL. In addition to the psychosocial changes (Cruice, Hill, Worrall, & Hickson, 2010), PWA’s communicative confidence appears to influence perceived life participation (Castro, Peterson, Chiou, & Yu, 2016). Most large-scale stroke studies have excluded Qol for PWA because of severe comprehension and expression deficits (Cruice et al., 2010). Research studies examining the relationship between life participation and aphasia commonly exclude severe aphasia because most QoL scales are not designed for severe aphasia (Cruice, Worrall, Hickson, & Murison, 2005; see Stroke and Aphasia Quality of Life Scale–39 [SAQOL-39; Hilari, Byng, Lamping, & Smith, 2003] as an example in the study conducted by Nicholas, Hunsaker, & Guarino, 2017). Of note, PWA typically express a strong desire to return to prestroke life (Worrall et al., 2011); however, it remains unclear to what degree PWA see their life participation as having changed directly from before to after a stroke (e.g., aspects of life quality). Extracting the experiences of PWA can be challenging due to language and cognitive difficulties (Rautakoski, Korpijaakko-Huuhka, & Klippi, 2008), and the relationship between language and cognition is not always clear in clinical practice. The presence of aphasia appears to relate to nonlinguistic cognitive ability (Fucetola, Connor, Strube, & Corbetta, 2009; Glosser & Goodglass, 1990; Helm-Estabrooks, 2002; McNeil et al., 2004; Seniow, Litwin, & Lesniak, 2009). Murray (2012) revealed associations between complex attention skills and overall communication skills in PWA. PWA’s ability to “think for speaking” (Marshall, 2009) and their language and executive functions status (Lambon Ralph, Snell, Fillingham, Conroy, & Sage, 2010) likely affect therapy gains. Many PWA demonstrate difficulty learning to use alternative modes of communication (Beckley et al., 2013; Purdy, Duffy, & Coelho, 1994), possibly due to deficits in cognitive flexibility (Chiou & Kennedy, 2009; Vallila-Rohter & Kiran, 2015). Thus, the cognitive deficits observed in PWA are likely to lead to conversational difficulties in life situations because of the demanding complex integration of planning, sequencing, organization, and monitoring required in conversations (Frankel, Pen, & Ormond-Brown, 2007). Few studies have investigated the role of language and cognition on PWA’s life participation. Our preliminary report (Chiou, Yu, & Halvorson, 2017) found that cognitive scores from the Cognitive Linguistic Quick Test (CLQT; Helm-Estabrooks, 2001) significantly correlated with selfreported life participation measures. Nicholas et al. (2017) identified three nonlinguistic cognitive predictors (Symbol Trials, Design Fluency, and Mazes from the CLQT) predicting PWA’s health-related QoL using SAQOL-39 (Hilari, Byng, Lamping, & Smith, 2003). However, the SAQOL-39 is not appropriate for people with more severe aphasia and cannot address some PWA’s life participation issues in reading/writing and contexts (Chue, Rose, & Swinburn, 2010). Given the lack of understanding about QoL changes after having aphasia in people with all aphasia severity levels, the focus of this study was to examine patient-reported measures of life participation along with relations between life participation, communicative confidence, language, and cognition in PWA with a wide range of aphasia severity. Two research questions were addressed: 1. Does life participation change after a stroke? 2. What is the role of language, communicative confidence, and cognitive status on life participation perceived by PWA?

Method Participants Thirty-three adults with an average age of 63.06 years (SD = 12.89) and an average of 94.2 months post onset (SD = 78.38; Mdn = 65.00) were recruited from local aphasia groups and rehabilitation centers in the midwest and west coast regions of the United States. All participants met inclusion criteria (aphasia diagnosis, no psychiatric disorders, English as their dominant

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language, and adequate hearing and vision). Visual neglect was not formally tested, and all participants attended to test stimuli in both visual fields of Clock Drawing subtest of the CLQT. Consent was obtained from all participants according to procedures approved by the institutional review board at Minnesota State University, Mankato, and California State University, Northridge. The severity and type of aphasia was determined by aphasia quotient (AQ) of the WAB-R and included 25 with mild aphasia, four with moderate aphasia, two with severe aphasia, and two with very severe aphasia (M = 78.6, SD = 22.0). Twenty-five had fluent aphasia (20 anomic, five conduction), and eight had nonfluent aphasia (six Broca’s aphasia, two transcortical motor; see Table 1). The cause for aphasia was cerebrovascular accident alone. Table 1. Participant characteristics. P

Age (years)

Sex

MPO

Edu (years)

Aphasia severity/type

WAB-AQ

ALA-R

Language composite score group

Cognitive composite score group

P1

62

M

113

14

mild/anomic

93.4

2.2

H

H

P2

56

F

113

19

mild/conduction

76.8

3.1

L

H

P3

70

M

54

14

very severe/Broca’s

20.3

2.1

L

L

P4

71

F

35

14

mild/anomic

87.4

2.8

H

H

P5

73

F

137

14

mild/anomic

97.1

3.2

H

H

P6

60

F

173

16

mild/anomic

81.9

2.8

L

H

P7

54

M

77

16

mild/conduction

82.5

2.6

L

L

P8

55

M

125

18

mild/anomic

91.9

2.0

H

H

P9

61

F

51

17

mild/anomic

94.0

2.3

H

L

P10

59

M

52

16

mild/anomic

90.2

2.9

H

L

P11

56

M

184

17

mild/conduction

79.2

2.4

L

H

P12

76

M

65

16


24.3

2.4

L

L

P13

56

F

36

14

mild/anomic

94.0

1.6

H

H

P14

37

F

61

20

mild/anomic

97.4

2.9

H

H

P15

64

M

17

16

moderate/Broca’s

51.4

1.3

L

L

P16

83

M

52

12

mild/anomic

85.3

1.8

L

L

P17

63

F

74

16

severe/Broca’s

43.6

2.9

L

L

P18

62

M

36

17

moderate/anomic

75.4

3.0

L

L

P19

50

M

21

16

mild/anomic

92.3

3.0

H

H

P20

66

M

38

14

mild/anomic

93.0

3.0

H

H

P21

73

M

124

20

mild/anomic

80.2

3.5

L

L

P22

74

M

154

13


22.1

1.9

L

L

P23

57

M

54

16

mild/anomic

96.5

2.2

H

H

P24

59

M

18

20

mild/anomic

98.7

2.0

H

H

P25

80

M

401

12

moderate/ conduction

70.3

1.4

L

L (continued)

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P26

76

F

197

16

mild/anomic

89.5

3.2

H

H

P27

74

M

20

19

mild/anomic

96.4

2.7

H

H

P28

36

F

124

18

moderate/Broca’s

67.9

2.5

L

L

P29

29

M

42

18

mild/transcortical motor

82.4

2.1

L

H

P30

81

F

109

18

mild/transcortical motor

87.6

2.2

H

H

P31

56

M

65

16

mild/anomic

90.5

3.0

H

L

P32

69

M

146

18

mild/anomic

80.1

3.0

L

L

P33

83

F

144

18

mild/conduction

83.8

2.8

L

H

Note. P = participant; MPO = months post onset; Edu = years of education; WAB-AQ = Western Aphasia Battery–Aphasia Quotient; ALA-R = Assessment for Living with Aphasia–Revised; M = male; F = female; H = Language composite score or cognitive composite score above or equal the group median score; L = Language composite score or cognitive composite score below the group median score. Measures Five measures used for this study were described as follows: Language and cognition measures: The WAB-R and CLQT are standardized impairmentfocused tests designed to assess language and cognitive abilities in PWA. AQ of the Western Aphasia Battery Aphasia Quotient (WAB-AQ) was chosen to measure overall linguistic function and aphasia severity. The purpose of the cognitive measure in this study was focusing on the nonlinguistic function for PWA. Thus, only the six nonlinguistic cognitive subtests of the CLQT designed to measure attention, memory, executive, and visuospatial domains were selected (the subtests focusing on language domain were excluded here): CLQT-cog., Symbol Cancellation, Clock Drawings, Symbol Trials, Design Memory, Mazes, and Design Generation (see Helm-Estabrooks, 2002). The score of each subtest, except Clock Drawing, contributes to the composite severity rating. The CLQT-cog score is the composite severity rating across the five domains (attention, memory, executive, visuospatial, language) subtracting language domain rating. Life participation measures: Assessment for Living with Aphasia–Revised (ALA-R; Kagan et al., 2014) is a patient-reported aphasia-friendly pictographic measure assessing aphasia, participation in life situations, environment facilitators and barriers to communication, personal factors, and overall QoL in an interview format appropriate for use with severe aphasia (Kagan et al., 2008). PWA listened to each test question verbally and saw a visual presentation as well, including written test questions with bolded key words and topics for test questions (e.g., communication, participation, home or where you live, and people in your life) from ALA-R Pictographic Booklet. PWA provided their answers to the questions on the ALA-R with a 5-point (0–4) aphasia-friendly rating scale, consistent with the World Health Organization International Classification of Functioning, Disability and Health system (2001). A prestroke ALA-R (PREALA-R) was created by modifying the original ALA-R questions for this study. The PRE-ALA-R allows PWA to describe their life participation before stroke (e.g., original question: “How would you rate your talking?” prestroke question: “How would you rate your talking before your stroke?”). A practice question was presented to the participants before giving both the ALA-R and PREALA-R to confirm their comprehension of the tasks. Psychosocial measure: Communication Confidence Rating Scale for Aphasia (CCRSA; Babbitt, Heinemann, Semik, & Cherney, 2011) is a 10-item questionnaire measuring self-reported

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communicative confidence in different situations and with different people. The CCRSA was adapted into an aphasia-friendly format (enlarged font size, font style Verdana, key words in bold) and used the ALA-R 5-point scale described above. Procedure Testing was 2.5 hr on average, divided into two sessions on 2 days (less than 2 weeks apart) to avoid fatigue. Two graduate student researchers who received supported conversation training with adults with aphasia at their university program conducted testing sessions in a quiet location. The prompting procedure for the ALA-R, PRE-ALA-R, and CCRSA followed the principles of supported conversation to facilitate understanding and conversation for PWA, especially for adults with severe aphasia (Kagan, Black, Duchan, Simmons-Mackie, & Square, 2001). Presentation order of the five measures was pseudorandom, as the PRE-ALA-R was administered on a separate day from the ALA-R to avoid confusion. Data analysis was described separately by each research question below.

Results Research Question 1: Does Life Participation Change After a Stroke? To understand which aspects of life quality have been changed in PWA from before to after a stroke, several paired sample t tests were conducted to compare the average rating scores of the four domains (aphasia, participation, environment, personal identity) in ALA-R to those in PRE-ALA-R. The results showed significant mean differences across all domains (p < .001) with significantly higher rating scores for PRE-ALA-R, suggesting a reduced life participation after living with aphasia across the four domains, including aphasia (poststroke: M = 1.84; prestroke: M = 3.68, Cohen’s d = 2.87), participation in life situations (poststroke: M = 2.54; prestroke: M = 3.27, Cohen’s d = 1.39), environment facilitators and barriers (poststroke: M = 2.58; prestroke: M = 3.60; Cohen’s d = 1.71), and personal identities/attitudes/feelings (poststroke: M = 2.66; prestroke: M = 3.33; Cohen’s d = 1.24). The results suggest a significant impact on all aspects of life participation after a stroke (see Table 2). Table 2. Descriptive statistics on all measures. Measure

Min

Max

M (SD)

WAB-AQ

20.3

97.4

78.6 (22.0)

WAB Auditory Verbal Comprehension

6.9

18.0

10.3 (3.1)

WAB Spontaneous Speech

0.0

20.0

15.6 (5.5)

WAB Repetition

0.5

10.0

7.3 (2.7)

WAB Naming and Word Finding

0.3

9.9

7.6 (2.6)

ALA-R Overall Average

1.3

3.5

2.5 (0.6)

ALA-R Aphasia Domain

0.2

3.4

1.8 (0.8)

ALA-R Participation Domain

1.1

3.5

2.5 (0.6)

ALA-R Environment Domain

1.0

3.8

2.6 (0.7)

ALA-R Personal Domain

1.4

3.7

2.7 (0.6)

PRE-ALA-R Overall Average

1.9

3.9

3.3 (0.4)

PRE-ALA-R Aphasia Domain

2.2

4.0

3.7 (0.5)

PRE-ALA-R Participation Domain

2.0

3.8

3.3 (0.4)

PRE-ALA-R Environment Domain

2.5

4.0

3.6 (0.4) (continued)

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PRE-ALA-R Personal Domain

2.1

4.0

3.3 (0.5)

CCRSA Overall Average

12.0

35.0

25.3 (7.2)

CLQT Composite Severity Rating (nonlinguistic)

5.0

16.0

13.3 (2.6)

CLQT Symbol Cancellation

0.0

12.0

10.1 (3.7)

CLQT Clock Drawings

4.0

13.0

11.1 (2.2)

CLQT Symbol Trials

1.0

10.0

8.6 (2.6)

CLQT Design Memory

2.0

6.0

5.2 (1.1)

CLQT Mazes

3.0

8.0

6.4 (1.9)

CLQT Design Generation

0.0

11.0

4.8 (3.0)

Note. WAB-AQ = Western Aphasia Battery–Aphasia Quotient; WAB = Western Aphasia Battery; ALA-R = Assessment for Living with Aphasia–Revised; PRE-ALA-R = prestroke ALA-R; CCRSA = Communication Confidence Rating Scale for Aphasia; CLQT = Cognitive Linguistic Quick Test. The four participants with severe or very severe aphasia rated their prestroke QoL higher than their poststroke QoL on the ALA-R average scores across the four domains (P3: prestroke 3.11 vs. poststroke 2.08; P12: prestroke 3.49 vs. poststroke 2.38; P17: prestroke 3.51 vs. poststroke 2.92; P22: prestroke 3.86 vs. poststroke 1.92). Results confirmed that the participants with severe aphasia or very severe aphasia were able to use the scales to complete both tests with skilled conversational support provided by the research examiners. The aphasia-friendly ALA-R and PRE-ALA-R would be appropriate for people with severe and very severe aphasia. Research Question 2: What Is the Role of Language, Communicative Confidence, and Cognitive Status on Life Participation Perceived by PWA? The participants were grouped based on their language (AQ from the WAB-R) and cognition (CLQT-cog = composite severity rating across five domains excluding language domain) to examine whether a heterogeneous language and cognitive status would be a confounding factor to ALA-R rating scores. On the basis of a median split, participants were placed into a high (above or equal to the median score) or low group (below the median score; adapted from Nicholas et al., 2017). Examination of the language and cognitive composite scores resulted in four severity groupings, two congruent severity groups (13 participants above and 12 below the median split for both language and cognition) and two noncongruent severity groups (three participants in high language and low cognition group and five in low language and high cognition group). A one-way analysis of variance revealed no significant mean differences on ALA-R, F(3, 9) = 0.53, p = 0.66, among the four severity groups, indicating that the heterogonous language and cognitive status for this cohort was not a factor contributing to any effect for the following analysis. A Pearson r uncorrected correlation matrix was constructed to explore relationships among patient-reported life participation measure (overall average rating from the ALA-R), impairmentlevel measures for language (AQ) and cognition (CLQT-cog), and communicative confidence measure (overall average rating from CCRSA). The results (see Table 3) indicated a significant correlation for ALA-R with both CLQT-cog and CCRSA and for CLQT-cog with CCRSA and WAB-AQ, suggesting that PWA who rated themselves high on life participation were confident communicators with good cognitive ability and vice versa. Of note, aphasia severity (WAB-AQ) did not relate to life participation (ALA-R). We further examined the relationship between life participation measure (ALA-R overall average) and the nonlinguistic subtest scores of the CLQT (Symbol Cancellation, Symbol Trials, Design Memory, Mazes, and Design Generation). The results indicated that PWA’s life participation was significantly correlated with CLQT Symbol Trials subtest, which was one of the health-related QoL predictors affecting PWA found in Nicholas et al.’s study (2017).

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Table 3. Correlations between ALA-R and other measures. Measure

ALA-R

WAB-AQ

CCRSA

CLQT-cog

CLQT Symbol Cancel.

CLQT Symbol Trials

CLQT Design Gen.

CLQT Mazes

ALA-R

—

.25

.64**

.35*

.01

.50*

.01

.01

—

.28

.67**

.15

.48*

.24

.06

—

.39*

.04

.37*

.01

.07

—

.56**

.69**

.45*

.24

WAB-AQ CCRSA CLQT-cog

Note. ALA-R = Assessment for Living with Aphasia–Revised; WAB-AQ = Western Aphasia Battery– Aphasia Quotient; CCRSA = Communication Confidence Rating Scale for Aphasia; CLQT Symbol Cancel. = CLQT Symbol Cancellation; CLQT-cog = composite severity rating across five domains excluding language domain; CLQT Design Gen. = CLQT Design Generation. *p < .05 (two tailed). **p < .001 (two tailed).

Discussion This study examined how people with a wide range of aphasia severity perceive their life participation by comparing specific aspects of life participation before and after stroke using the aphasia-friendly patient report outcome measures with supported conversation approach. Findings revealed that aphasia severity cannot adequately capture PWA’s life participation level, as noted by Nicholas et al. (2017) and Williamson, Richman, and Redmond (2011). Consistent with Hilari et al. (2012), when asked to compare life prior to a stroke with post stroke, regardless of their aphasia severity, PWA expressed that living with aphasia impacts all aspects of life participation (i.e., communication difficulties, reduced participation at home or community, increased environmental barriers, and negative attitude). Moreover, aphasia severity does not appear to affect PWA’s confidence level in communication ability in daily situations. PWA’s communicative confidence as measured by CCRSA is affected by their cognitive abilities and reflects on how they perceive themselves living with aphasia as a whole. PWA often demonstrate co-existing cognitive difficulties (Baldo et al., 2005; Helm-Estabrooks, 2002; Murray, 2012, 2017; Purdy, 2002). PWA’s nonlinguistic cognitive status appears to play an important role in living with aphasia. Our finding revealed that the performance of the Symbol Trials is related to QoL perceived by people with mild to severe aphasia. Although Nicholas et al. (2017) identified three nonlinguistic cognitive predictors (CLQT Symbol Trials, Design Fluency, Mazes), their QoL measure was not appropriate for people with more severe aphasia. The ALA-R tests appropriate for mild to severe aphasia were administered following the supported conversation techniques to reveal PWA’s competence. The CLQT Symbol Trials subtest designed to assess planning, self-monitoring, working memory, and visual attention (Helm-Estabrooks, 2001) requires individuals to continuously switch from focusing on shape to size while monitoring their response at every step for correctness before making the next move. These executive control and cognitive flexibility skills interact in complex ways with many life activities for PWA (Nicholas et al., 2017). Thus, one could easily expect that an individuals’ life participation and treatment outcome may be negatively affected without these cognitive control skills. One limitation of the study was the unbalanced sample size related to aphasia severity. There was disparity in the sample size of mild aphasia (N = 25) versus severe and very severe aphasia (N = 4). Future investigations should include a larger sample size of severe aphasia patients.

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The findings of the current study emphasize the importance of effective measures to examine current life participation and assess meaningful life changes for adults with mild to severe aphasia. Impairment-based language assessment does not capture what PWA would think of their own life participation and communicative confidence. SLPs should become familiar with patient-reported measures appropriate for PWA, implement skilled support to capitalize PWA competence (i.e., Supported Conversation for Adults with Aphasia from Kagan et al., 2001), and include life participation, cognition, and communicative confidence measures as routine components of aphasia evaluation to better understand PWA’s priorities in life for aphasia treatment.

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