Skip to main content
NCBI home page
American Journal of Speech-Language Pathology logoLink to American Journal of Speech-Language Pathology
. 2023 Jun 19;32(4):1450–1465. doi: 10.1044/2023_AJSLP-22-00346

Effects of Aided Communication on Communicative Participation for People With Amyotrophic Lateral Sclerosis

Betts Peters a,b,✉, Jack Wiedrick c, Carolyn Baylor d
PMCID: PMC10473367  PMID: 37335771

Abstract

Purpose:

Many people with amyotrophic lateral sclerosis (PALS) experience speech changes, which may interfere with participation in communication situations. This study was designed to investigate the effects of aided communication on self-rated communicative participation among PALS and the relationship between speech function and communicative participation for PALS at various stages of speech impairment and communication aid use.

Method:

Participants with amyotrophic lateral sclerosis completed an online questionnaire in which they identified their current communication methods, rated their speech function, and rated their communicative participation in various situations on a modified version of the Communicative Participation Item Bank short form. PALS who reported using aided communication rated their communicative participation under two conditions: with unaided communication only and with access to all of their communication methods.

Results:

Communication aids appeared to support communicative participation for many participants with dysarthria. Across all levels of speech function, PALS who use aided communication reported better participation under the all-methods condition than the unaided-only condition, with the largest benefits for participants with anarthria (Revised ALS Functional Rating Scale [ALSFRS-R] speech rating = 0). Communicative participation ratings worsened with more severe speech impairment under both conditions for most levels of speech function, but PALS with anarthria (ALSFRS-R speech rating = 0) reported better participation under the all-methods condition than those who used residual speech in combination with non speech methods (ALSFRS-R speech rating = 1).

Conclusions:

Aided communication can help PALS continue to participate in various communication situations as their speech function deteriorates. Variability in self-rated communicative participation, even for PALS at the same level of speech function, highlights the need for an individualized approach and consideration of personal and environmental factors in augmentative and alternative communication intervention.

Supplemental Material:

https://doi.org/10.23641/asha.22782986

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease involving degeneration of the upper and lower motor neurons, causing muscle weakness, and eventually paralysis, in various areas of the body. Involvement of the bulbar muscles can lead to a mixed spastic–flaccid dysarthria, with speech characterized by changes in articulation, speaking rate, phrase length, nasality, pitch, loudness, and/or voice quality (Hanson, 2011). An estimated 80%–95% of people with amyotrophic lateral sclerosis (PALS) experience dysarthria at some point in the disease process (Beukelman et al., 2011). Speech intelligibility typically decreases as ALS progresses, and some PALS eventually reach a state of anarthria. By the last 6 months of life, a majority of PALS have difficulty communicating with their natural speech. In a survey of surviving family members and caregivers, 65% reported that they had difficulty understanding their loved one in their last 6 months, and 79% reported that their loved one had trouble being understood by less familiar communication partners during that time. Only 24.6% of respondents reported that their loved one was still speaking in their final days (Brownlee & Bruening, 2012).

Maintaining the ability to communicate in the face of declining speech intelligibility is of the utmost importance for PALS. Treatment for communication disorders in ALS focuses on compensation, providing strategies and aids that help PALS to (temporarily) improve speech intelligibility or to communicate with alternative, nonspeech methods. Augmentative and alternative communication (AAC), the use of nonspeech methods to either supplement or replace speech function, is considered part of the standard of care in ALS treatment (Beukelman et al., 2011; Fried-Oken et al., 2015; Hanson, 2011). There are two main categories of AAC strategies and techniques. Unaided communication is produced using only the body and may include speech, vocalizations, manual signs, gestures, body language, and facial expressions. Aided communication involves the use of tools or devices and includes everything from simple methods such as writing on a notepad or pointing to a printed communication board to computer-based speech-generating devices (SGDs; Beukelman & Light, 2020).

The communication needs of PALS are similar to those of any other population, including Light's (1988) essential areas of social interaction: meeting basic needs, sharing new information, establishing and maintaining social closeness with others, and following the rules of social etiquette. Many PALS report that social closeness with loved ones is particularly important (Fried-Oken et al., 2006; McKelvey et al., 2012; Murphy, 2004), and communication is strongly tied to PALS' relationships with others (Munan et al., 2021). Discussion of physical needs and caregiving issues becomes crucial in the later stages of the disease (Brownlee & Bruening, 2012; Munan et al., 2021). Communication, whether via natural speech or AAC, is crucial to the quality of life of PALS (Felgoise et al., 2016; Linse, Aust, et al., 2018; Londral et al., 2015).

In recent years, speech-language pathologists (SLPs) have increasingly focused on improvements in communicative participation, or communicating with other people in various social contexts and life situations, as important treatment outcomes (Eadie et al., 2006; Page & Yorkston, 2022). People with communication impairments have reported that restrictions to communicative participation have both functional effects, such as changes to how they approach certain situations, and emotional effects, such as frustration and embarrassment (Baylor et al., 2011). Unlike function-oriented metrics such as intelligibility, speaking rate, or accuracy in producing messages with an SGD, which may be measured by an SLP, communicative participation is often assessed as a patient-reported outcome, reflecting an individual's own view of their everyday experiences with communication.

Investigations of communicative participation among PALS have primarily focused on its association with speech deterioration. One study included only PALS who communicated with natural speech (though some supplemented their speech with AAC strategies) and found that both better speech function and higher levels of speaking demands in daily life correlated strongly with more favorable ratings of communicative participation (Yorkston et al., 2017). Another study found positive correlations between communicative participation and both bulbar function and speech intelligibility (Börjesson et al., 2021). A positive correlation between speech intelligibility and communicative effectiveness, a separate but related construct, was found in an earlier study, which included PALS with speech intelligibility ranging from 0% to 100% and unspecified communication methods. PALS rated their communicative effectiveness considerably lower as their speech worsened, even when intelligibility remained above 90% (Ball et al., 2004).

To date, there has been limited investigation of the effects of AAC use on PALS' communicative participation. Surviving spouses and caregivers of PALS who used AAC have reported in surveys and qualitative interviews that AAC strategies helped to support their loved ones' communication in everyday life (Fried-Oken et al., 2006; McKelvey et al., 2012). In an earlier study of communicative participation for PALS, two participants who had recently begun using AAC reported that they felt “very restricted in their communicative participation when they had to rely on speech, but often did not feel restricted at all when they had access to their AAC” (Börjesson et al., 2021, p. 106). A small sample of PALS with severe disabilities who used eye-tracking SGDs reported that they were able to communicate effectively in a variety of situations and felt their communicative functioning would be significantly worse without an SGD (Linse, Rüger, et al., 2018).

While these results suggest that AAC use may support better communicative participation for PALS, data from larger and more representative samples are needed to explore this relationship and its implications for clinical intervention for individuals at various stages of functional change. In this study, a modified version of the General Short Form of the Communicative Participation Item Bank (CPIB; Baylor et al., 2013) was used to assess communicative participation for a large sample of PALS at all levels of speech function, including those who use aided communication. The study addressed the following research questions: (a) How do PALS rate their communicative participation? (b) Among those who use communication aids, is there a difference between communicative participation ratings with and without those aids? (c) What is the relationship between self-rated speech function and communicative participation for PALS, and how does the use of aided communication affect this relationship? We present results for both overall communicative participation and participation in individual communication situations.

Method

Study Design

Data for this cross-sectional study were collected with an anonymous online questionnaire during April, May, and June of 2021. The study was approved by the Oregon Health & Science University (OHSU) Institutional Review Board (Study No. 22543).

Participants

Participants met the following inclusion criteria (all determined by self-report): (a) diagnosed with ALS, (b) 21–89 years old,1 and (c) able to read and communicate in English. There were no restrictions to inclusion based on severity of speech impairment or use of AAC, as diversity in these characteristics was desired in the sample. Recruitment materials were shared through the ALS Registry Research Notification Mechanism (Malek et al., 2014) and study directories on the websites of the ALS Registry and the Northeast ALS Consortium and were e-mailed to national and local staff of the ALS Association and other nonprofit groups serving PALS, SLPs who work with PALS, and PALS identified through the OHSU Cohort Discovery tool. Before beginning the questionnaire, participants viewed a study information sheet and were asked to confirm that they met the inclusion criteria and agreed to join the study. Participants received no direct compensation, but the researchers donated $1 to the participant's choice of one of three nonprofit organizations for each completed questionnaire.

Questionnaire and Data Collection

The online questionnaire was administered using Qualtrics software (Qualtrics). Responses were anonymized, and the survey software placed cookies in respondents' browsers to allow them to complete the questionnaire over multiple sessions if necessary and to discourage multiple submissions from the same individual. To reduce participation barriers related to computer skills or access, respondents were allowed to have another person help enter their responses into the questionnaire but were instructed that all responses must be provided by the PALS. Communicative participation data were collected as part of a larger questionnaire that also included items related to physical and mental health, communication methods, and experiences with AAC service delivery. Median time for completion of the entire questionnaire was 33 min (interquartile range [IQR] = 23–56). See Peters (2022) and Peters et al. (2022) for details about questionnaire design and pretesting and results related to communication methods and service delivery experiences.

Physical function was assessed with a self-administered version of the Revised ALS Functional Rating Scale (ALSFRS-R; Bakker et al., 2020; Cedarbaum et al., 1999). The ALSFRS-R has demonstrated strong internal consistency and construct validity (Cedarbaum et al., 1999), and self-administered versions presented in an online questionnaire have shown excellent intra- and interrater reliability (Bakker et al., 2020; Maier et al., 2012). Responses to the speech item of the self-administered ALSFRS-R (“What is your speech like?”) were used as a measure of speech function. Higher scores on this 5-point item represented better function, with rating options indicating no change in speech (4), detectable speech disturbance (3), speech intelligible with repeating (2), use of both speech and nonspeech methods (1), or inability to speak (0).

Communicative participation was assessed using a modified version of the CPIB General Short Form (Baylor et al., 2013). The original short form listed 10 common situations that involve communicating with others. For each item, respondents were asked to identify the degree to which their condition, defined as “ALL issues that may affect how you communicate in these situations, including speech conditions, any other health conditions, or features of the environment,” interferes with their participation in that situation. Response options were presented on a 4-point Likert-type scale ranging from not at all to very much. The CPIB was recently revised with more inclusive language for use with a wider range of populations who may experience communicative participation restrictions (Teixeira et al., 2023). The modified form in this study used the revised language, with questions and instructions referring to the level of difficulty respondents experience rather than the degree of interference.

The CPIB has been validated for people who use natural speech for communication (Baylor et al., 2013), and the original short form has previously been administered to PALS who meet this criterion (Börjesson et al., 2021; Yorkston et al., 2017). CPIB results have not been reported for PALS who primarily or exclusively use AAC. The original short form contains items that may be irrelevant to some PALS, such as “communicating when you are running errands.” PALS with severe physical impairments may leave their homes only rarely, or not at all, especially during the COVID-19 pandemic that was ongoing during data collection. For this study, the revised CPIB short form was modified, with the permission of the original authors, in order to: (a) replace some items in the existing short form with other items from the CPIB item bank that are likely to be relevant and important to all or most PALS and (b) adapt the instructions and question formatting to create two different versions for respondents who do and do not use aided communication.

The “running errands” item was excluded from the questionnaire, and seven alternate items from the full CPIB item bank, along with the nine remaining items from the existing short form, were evaluated by 10 individuals with ALS or primary lateral sclerosis (PLS) during pretesting. PLS is a neurodegenerative condition that is closely related to ALS but affects only the upper motor neurons and typically progresses more slowly (Barohn et al., 2020). The two conditions cause similar speech and physical impairments, and people with PLS often receive similar interventions to PALS. As such, people with PLS were considered to be appropriate pretesters for the modified CPIB questionnaire for this project. Pretesters were asked to rate each item as a “yes,” “no,” or “maybe” for inclusion in the questionnaire based on their impressions of the importance or frequency of occurrence of each situation. They also identified items they found confusing or redundant. Based on pretester feedback, 10 items were selected for inclusion in the questionnaire. Although not all PALS may often “have a short phone conversation” or “communicate over video calls,” these items were included because pretesters rated them as important. See Peters (2022) for additional information on pretesting and CPIB item selection.

The CPIB items included in the questionnaire are listed in Supplemental Material S1. Each item was scored on a scale from 0 to 3, with higher scores indicating less difficulty with communicative participation (0 = very much, 1 = quite a bit, 2 = a little, and 3 = not at all). Individual item scores were summed to obtain a total score. The coherence of item–factor relationships, measurement equivalence across respondents and occasions, and unidimensionality of the construct for the modified CPIB short form were evaluated using factor analysis and item response theory for the full data set collected for the study and were found to be satisfactory. See Supplemental Material S2 for additional details.

In the communication methods section of the questionnaire, participants were asked to indicate the methods they used for face-to-face communication. Based on those selections, they were classified into two groups: Group 1 used only unaided communication (including speech and body movements such as eye blinks or gestures), and Group 2 used aided communication at least some of the time.2 PALS in Group 1 received the standard instructions and question formatting from the revised CPIB short form. Those in Group 2 received modified instructions asking them to rate their communicative participation under two conditions: (a) using only unaided communication and (b) with access to all of their communication methods. See Supplemental Materials S3 and S4 for revised instructions and question formatting.

Data Cleaning and Analysis

Data were exported from Qualtrics into an Excel spreadsheet and cleaned in Excel (Microsoft) and Tableau Prep Builder (Tableau Software) and then analyzed and visualized using Tableau Desktop (Tableau Software) and R (R Core Team, 2019) with the np (Hayfield & Racine, 2008) and ggplot2 (Wickham, 2016) packages. Psychometric evaluations were conducted using Stata (Version 16.1; StataCorp LLC).

During data cleaning, two CPIB items were identified as potentially problematic for inclusion in the calculation of total scores. Not all respondents communicated by phone or video calls; elsewhere in the questionnaire, 20.9% of respondents reported that they did not participate in phone calls, and 15.5% reported that they did not participate in video calls. In addition, psychometric evaluation revealed high situational or participant-level heterogeneity for these items (see Supplemental Material S2 for details). As a result, those two items were omitted when calculating total scores on the modified CPIB short form but were retained for descriptive analysis of ratings for the individual situations. Summing scores from the remaining eight items yielded a total score with a possible range of 0–24. 3

Descriptive statistics were used to summarize participant demographic and health characteristics, as well as total CPIB scores and individual item scores to address Research Question 1 (how PALS rate their communicative participation). The two total CPIB scores of participants in Group 2 (with unaided communication only and with all of their communication methods) were compared using a paired t test to address Research Question 2 (how use of communication aids affects communicative participation ratings). Nonparametric, nonlinear kernel-based regression (Racine & Li, 2004) was used to predict total CPIB scores based on ALSFRS-R speech rating for Group 1 and for Group 2 with and without communication aids to address Research Question 3 (the relationship between speech function and communicative participation and the effects of aided communication on that relationship). Significance levels for all inferential analyses were set at 0.05, and a combined harmonic mean p value (Wilson, 2019) was calculated to meta-analyze p values from the three kernel-based regressions (because of their interdependency) and provide a single statistic summarizing the strength of the relationship that may be found across PALS populations generally. Glass's delta (with the unaided-only condition as the reference) was used to measure effect sizes for differences in total CPIB scores for Group 2 with and without communication aids (Glass, 1976; Hedges, 1981).

Results

Of the 222 individuals who agreed to join the study, 206 completed the eight questions used to calculate the total CPIB score and were included in analysis, comprising 121 in Group 1 and 85 in Group 2. Their demographic characteristics, ALSFRS-R speech ratings, and ALSFRS-R domain and total scores are summarized in Table 1. Overall, 70.9% of participants reported at least some detectable change in their speech (ALSFRS-R speech rating ≤ 3), and 55.8% reported a reduction in intelligibility (ALSFRS-R speech rating ≤ 2). Among respondents in Group 2, 84.7% reported using one or more SGDs in face-to-face interactions, 60.0% reported using low-tech AAC methods, and 88.2% reported using unaided methods.

Table 1.

Participant demographics and self-administered Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) scores.

Variable Group 1 (n = 121)
 Group 2 (n = 85)
n % n %
Age (years) 64.1 (9.25) 38–83 64.3 (8.64) 34–84
Years since diagnosis 3.5 (5.01) 0–29 4.4 (5.29) 0–37
ALSFRS-R
 Bulbar domain 10.0 (2.04) 2–12 4.5 (3.09) 0–11
 Fine motor domain 6.9 (3.84) 0–12 6.1 (4.26) 0–12
 Gross motor domain 6.1 (3.16) 0–12 5.2 (4.12) 0–12
 Respiratory domain 9.2 (3.12) 0–12 7.2 (3.84) 0–12
 Total 32.1 (8.54) 9–47 23.3 (11.71) 0–41
n % n %
ALSFRS-R speech rating
 4: No speech change 57 47.1% 3 3.5%
 3: Detectable speech disturbance 25 20.7% 6 7.1%
 2: Intelligible with repeating 37 30.6% 17 20.0%
 1: Combining speech & nonspeech methods 2 1.7% 26 30.6%
 0: Unable to speak 0 0.0% 33 38.8%
Onset type
 Limb 101 83.5% 36 42.4%
 Bulbar 13 10.7% 44 51.8%
 Respiratory/trunk 3 2.5% 1 1.2%
 Mixed 4 3.3% 4 4.7%
Gender
 Female 36 29.8% 40 47.1%
 Male 85 70.2% 43 50.6%
 Unknown 0 0.0% 2 2.4%
Race
 American Indian or Alaska Native 0 0.0% 2 2.4%
 Asian or Asian American 1 0.8% 0 0.0%
 Black or African American 4 3.3% 0 0.0%
 White 112 92.6% 78 91.8%
 More than one race 1 0.8% 1 1.2%
 Unknown 3 2.5% 4 4.7%
Identifies as Hispanic or Latino
 Yes 4 3.3% 1 1.2%
 No 117 96.7% 84 98.8%
Region (U.S.)
 Midwest 23 19.0% 17 20.0%
 Northeast 14 11.6% 13 15.3%
 South 45 37.2% 31 36.5%
 West 39 32.2% 24 28.2%
Highest level of education
 Elementary school or some high school 1 0.8% 0 0.0%
 High school diploma or equivalent 3 2.5% 5 5.9%
 Some college 18 14.9% 11 12.9%
 Associate's degree 15 12.4% 8 9.4%
 Vocational/technical school 8 6.6% 4 4.7%
 Bachelor's degree 36 29.8% 33 38.8%
 Postgraduate degree 40 33.1% 24 28.2%
Employment status
 Not working due to medical condition 49 40.5% 42 49.4%
 Retired (not due to medical condition) 52 43.0% 32 37.6%
 Employed full time 16 13.2% 7 8.2%
 Employed part time 3 2.5% 3 3.5%
 Self-employed 1 0.8% 1 1.2%
Has a significant other
 Yes 105 86.8% 78 91.8%
 No 16 13.2% 7 8.2%
Living situation
 With significant other or other family 106 87.6% 78 91.8%
 Alone 11 9.1% 5 5.9%
 Assisted living or skilled nursing facility 4 3.3% 1 1.2%
 With friends or roommates 0 0.0% 1 1.2%
Open in a new tab

Note. Participants in Group 1 used only unaided communication, and those in Group 2 used aided communication at least some of the time. The ALSFRS-R has a possible score range of 0–12 for each domain and 0–48 for the total score, with lower scores indicating more severe impairment.

Overall Communicative Participation

Figure 1 illustrates the distribution of the total eight-item CPIB scores for PALS in Group 1 and for those in Group 2 with and without communication aids at each level of the ALSFRS-R speech rating scale (see Supplemental Material S5). For participants with a speech rating of 4 (no speech change), total CPIB scores clustered toward the upper end of the range, indicating little or no difficulty with communicative participation. A majority of Group 1 participants with a speech rating of 4 reported no difficulty at all (median total score = 24, IQR = 22–24). Median scores decreased at each successive level of speech function for Group 1 and for the unaided-only condition in Group 2. Participants with speech ratings of 1 (combining speech and nonspeech methods) or 0 (unable to speak) reported extreme difficulty with communicative participation in the unaided-only condition (Mdn = 2, IQR = 1–3 and Mdn = 0, IQR = 0–2, respectively). Total scores for participants with speech ratings of 3 (detectable speech change) and 2 (intelligible with repeating) were more variable, as were those for speech ratings of 1 and 0 under the all-methods condition. Even within a speech rating of 4 and the unaided-only conditions for speech ratings of 1 and 0, there were several outliers (more than 1.5 times the IQR below the first quartile or above the third quartile, identified with x marks in Figure 1). These outlier scores represent PALS who reported no speech change but considerable difficulty with communicative participation, as well as those who reported experiencing severe dysarthria but little difficulty with participation even without their aids.

Figure 1.

Box plots of the total 8 item C P I B score for the A L S F R S hyphen R speech rating and sample size. 4: No speech change. G 1: n = 57. G 2: n = 3. Purple box. First and third quartiles are 22 and 24, respectively. The outliers are marked at 5, 14, 15, 16, 17, 18, and 19. The bottom whisker is at 20. Pale green box. First and third quartiles are 18 and 19, respectively. The top whisker is at 21. Dark green box. First and third quartiles are 19 and 21, respectively. The top whisker is at 24. 3. Detectable speech change. G 1: n = 25. G 2: n = 6. Purple box. The first and third quartiles are 15 and 22, respectively. The median is 20. The top and bottom whiskers are at 24 and 9, respectively. Pale green box. The first and third quartiles are 7 and 16, respectively. The median is 10. The top and bottom whiskers are at 21 and 6, respectively. Dark green box. The first and third quartiles are 9 and 21, respectively. The median is 10. The top and bottom whiskers are at 24 and 6, respectively. 2: Intelligible with repeating. G 1: n = 37. G 2: n = 17. Purple box. The first and third quartiles are at 8 and 13, respectively. The median is 12. The top and bottom whiskers are at 20 and 3, respectively. An outlier is marked at 23. Pale green box. The first and third quartiles are at 5 and 11, respectively. The median is 9. The top and bottom whiskers are at 15 and 1, respectively. Dark green box. The first and third quartiles are 9 and 14, respectively. The median is 10. The top and bottom whiskers are at 15 and 2, respectively. 1: Speech and nonspeech. G 1: n = 2. G 2: n = 26. Purple box. The first and third quartiles are at 4 and 8, respectively. The median is 6. Pale green box. The first and third quartiles are at 1 and 3, respectively. The median is 2. The top and bottom whiskers are 4 and 0, respectively. Outliers are marked at 6, 7, 8, and 12. Dark green box. The first and third quartiles are 3 and 9, respectively. The median is 5. The top and bottom whiskers are at 16 and 0, respectively. 0: Unable to speak. G 1: n = 0. G 1: n = 33. Pale green box. The first and third quartiles are 0 and 2, respectively. The top whisker is at 3. Outliers are marked at 13, 23, and 24. Dark green box. The first and third quartiles are 8 and 14, respectively. The median is 10. The top and bottom whiskers are at 20 and 0, respectively. Legend. Violet: group 1. Pale green: Group 2 unaided only. Dark green: Group 2 all methods. Outliers are identified with x marks. Outliers are defined as being more than 1.5 times the I Q R below the first quartile or above the third quartile. These outlier scores represent P A L S who reported no speech change but considerable difficulty with communicative participation, as well as those who reported experiencing severe dysarthria but little difficulty with participation even without their aids.

Open in a new tab

Distribution of total CPIB score by group and ALSFRS-R speech rating. Higher scores represent better communicative participation. Marks represent outliers more than 1.5 times the IQR below the first quartile or 1.5 IQR above the third quartile. ALSFRS-R = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale; CPIB = Communicative Participation Item Bank; G1 = Group 1 (did not report use of aided communication); G2 = Group 2 (reported at least some use of aided communication); IQR = interquartile range.

Results from kernel-based regression analyses of the relationship between ALSFRS-R speech rating and total CPIB score are presented in Figure 2. Speech rating was a significant explanatory variable for total CPIB score for Group 1 (R 2 = .60) and for Group 2 under both the unaided-only and all-methods conditions (R 2 = .44 and R 2 = .27, respectively). Considering Group 1 and both conditions for Group 2 together, the relationship was very strong (harmonic mean p value < .0001), although the predictive value of ALSFRS-R speech rating for communicative participation as measured by total CPIB score varied considerably by condition, with both strong nonlinearity in the relationship for the Group 2 conditions and greater noise in the prediction at the lower end of the ALSFRS-R scale.

Figure 2.

A scatterplot for the 8 item total C P I B score versus the A L S F R S hyphen R speech rating. The y axis ranges from 0 to 24 in increments of 4. The x axis ranges from 4 down to 0 in decrements of 1. The curve fitted to the purple points starts at (4, 23), passes through (3, 18), and (2, 12), and ends at (1, 6). The curve fitted to the dark green points starts at (4, 20), passes through (3, 14), (2, 11), and (1, 8), rises to (0, 10), and ends. The curve fitted to the pale green points starts at (4, 18), passes through (3, 11), (2, 8), and (1, 4), and ends at (0, 2). Legend. Purple curve: Group 1. Dark green curve: group 2 all methods. Pale green curve: Group 2 unaided only. All values are estimated.

Open in a new tab

Scatter plot and nonparametric nonlinear kernel-based regression lines showing the relationship between ALSFRS-R speech rating and 8-item total CPIB score. ALSFRS-R = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale; CPIB = Communicative Participation Item Bank.

Total CPIB scores for PALS in Group 2 (across all levels of speech function) were significantly higher for the all-methods condition than the unaided-only condition (mean increase = 4.75, t(84) = 7.60, p < .0001). Broken down by level of speech function, the mean increase in total CPIB score when using aided communication was 1.7 points (SE = 0.67, n = 3) for PALS with a speech rating of 4 (no speech change), 1.8 (SE = 0.79, n = 6) for those with a speech rating of 3 (detectable speech disturbance), 1.5 (SE = 0.80, n = 17) for those with a speech rating of 2 (intelligible with repeating), 3.8 (SE = 0.83, n = 26) for those with a speech rating of 1 (combining speech and nonspeech methods), and 8.0 (SE = 1.20, n = 33) for those with a speech rating of 0 (unable to speak). Effect sizes were large for participants with speech ratings of 1 and 0 (Δ = 1.25 and Δ = 1.36, respectively) but small for those with a speech rating of 2 (Δ = 0.31). Effect sizes for Group 2 participants with speech ratings of 4 and 3 (Δ = 0.96 and Δ = 0.31, respectively) should be interpreted with extreme caution due to the small sample sizes for those subgroups and the strong possibility of sampling bias. Note that there may be some distortion in the effect size estimates for participants with speech ratings of 1 and 0 due to the presence of outliers with high CPIB scores in the unaided-only condition; in a larger sample, the effects of aided communication on communicative participation would likely be more pronounced in participants with a speech rating of 0, at least.

Communicative Participation in Specific Situations

Response distributions for individual CPIB items are shown in Figure 3. (In all figures in this section, the eight items used to calculate the total CPIB score are listed first, beginning with those with the largest proportions of Group 2 participants reporting an improved participation rating with use of aided communication.) Distributions for Group 2 are illustrated with Sankey diagrams in which flow width represents the proportion of respondents moving from a given response option in the unaided-only condition to each response option in the all-methods condition. Participants in Group 1 tended to report better communicative participation ratings than those in Group 2, with or without aids, for all situations. Getting a turn in a fast-moving conversation (see Figure 3h) and having a conversation when upset (see Figure 3g) appeared to be particularly challenging for many PALS, with over 10% of Group 1 participants and approximately three-quarters of Group 2 participants in the unaided condition rating participation in these situations as very difficult. The Sankey diagrams reveal that few Group 2 participants reported any improvement in participation with the use of aided communication in these two situations. Talking with people you know (see Figure 3a), having a short phone conversation (see Figure 3j), and communicating over video calls (see Figure 3i) appeared to allow better participation for many PALS. These situations were rated as not at all difficult by 60%–70% of Group 1 participants, 10%–15% of Group 2 participants with unaided methods only, and over 20% of Group 2 participants using all of their communication methods.

Figure 3.

A response distribution for 10 questions. The responses are presented as the percentage of respondents in each group or condition: Group 1, Group 2 with unaided methods only, and Group 2 with all methods. The caption on top reads How difficult it is for you to. a. talk with people you know. Group 1, n = 121: 60.3 not at all, 33.9 a little, 5 quite a bit, and 0.8 very much; Group 2, n = 85, Unaided: 10.6 not at all, 30.6 a little, 17.6 quite a bit, and 41.2 very much. Group 2, n = 85, All methods: 23.5 not at all, 49.4 a little, 21.2 quite a bit, and 5.9 very much. b. Communicate in a small group of people. Group 1, n = 121: 49.6 not at all, 34.7 a little, 13.2 quite a bit, and 2.5 very much. Group 2, n = 85, Unaided: 3.5 not at all, 15.3 a little, 18.8 quite a bit, and 62.4 very much. Group 2, n = 85, All methods: 9.4 not at all, 35.3 a little, 34.1 quite a bit, and 21.2 very much. c. Talk with people you do not know. Group 1, n = 121: 49.6 not at all, 31.4 a little, 16.5 quite a bit, 2.5 very much. Group 2, n = 85, Unaided: 4.7 not at all, 12.9 a little, 20.0 quite a bit, 62.4 very much. Group 2, n = 85, All methods: 16.5 not at all, 23.5 a little, 37.6 quite a bit, and 22.4 very much. d. Have a conversation that needs to be quick. Group 1, n = 121: 53.7 not at all, 26.4 a little, 18.2 quite a bit, and 1.7 very much. Group 2, n = 85, Unaided: 5.9 not at all, 17.6 a little, 22.4 quite a bit, and 54.1 very much. Group 2, n = 85, All methods: 10.6 not at all, 30.6 a little, 41.2 quite a bit, 17.6 very much. e. Communicate during an emergency. Group 1, n = 121: 50.4 not at all, 25.6 a little, 18.2 quite a bit, and 5.8 very much. Group 2, n = 85, Unaided: 4.7 not at all, 9.4 a little, 18.8 quite a bit, and 67.1 very much. Group 2, n = 85, All methods: 7.1 not at all, 27.1 a little, 36.5 quite a bit, 29.4 very much. f. Have a long conversation. Group 1, n = 121: 49.6 not at all, 28.1 a little, 16.5 quite a bit, and 5.8 very much. Group 2, n = 85, Unaided: 2.4 not at all, 12.9 a little, 21.2 quite a bit, and 63.5 very much. Group 2, n = 85, All methods: 11.8 not at all, 28.2 a little, 28.2 quite a bit, and 31.8 very much. g. Have a conversation when you are upset. Group 1, n = 121: 38 not at all, 24.8 a little, 22.3 quite a bit, 14.9 very much. Group 2, n = 85, Unaided: 7.1 not at all, 7.1 a little, 11.8 quite a bit, and 74.1 very much. Group 2, n = 85, All methods: 5.9 not at all, 23.5 a little, 22.4 quite a bit, and 48.2 very much. h. get your turn in a fast-moving conversation. Group 1, n = 121: 45.5 not at all, 22.3 a little, 19.8 quite a bit, and 12.4 very much. Group 2, n = 85, Unaided: 2.4 not at all, 14.1 a little, 8.2 quite a bit, and 75.3 very much. Group 2, n = 85, All methods: 7.1 not at all, 14.1 a little, 17.6 quite a bit, and 61.2 very much. i. Communicate over video calls. Group 1, n = 111: 59.5 not at all, 33.3 a little, 6.3 quite a bit, and 0.9 very much. Group 2, n = 85, Unaided: 9.5 not at all, 23.8 a little, 22.2 quite a bit, and 44.4 very much. Group 2, n = 63, All methods: 20.6 not at all, 42.9 a little, 31.7 quite a bit, and 4.8 very much. j. have a short phone conversation. Group 1, n = 117: 70.1 not at all, 23.9 a little, 4.3 quite a bit, and 1.7 very much. Group 2, n = 85, Unaided: 15.2 not at all, 30.4 a little, 23.9 quite a bit, and 30.4 very much. Group 2, n = 46, All methods: 23.9 not at all, 45.7 a little, 23.9 quite a bit, and 6.5 very much.

Open in a new tab

Response distribution for individual Communicative Participation Item Bank items. Responses from Group 1 are shown in the left column of each subfigure. Sankey diagrams to the right of each subfigure illustrate the effects of aided communication use on communicative participation for each situation, with ratings for the unaided-only condition in the center column and the all-methods condition in the right column.

Median CPIB item ratings for each level of speech function are illustrated in Figure 4. An overall downward trend was observed in the median ratings for Group 1, beginning with a median of “not at all” for each item for participants with a speech rating of 4 (no speech change) and decreasing to “a little” or “quite a bit” for those with a speech rating of 2 (intelligible with repeating) and even lower for the two participants in this group with a speech rating of 1 (combining speech and nonspeech methods). Relationships between median item scores and speech rating for Group 2 were similar to those seen in the total CPIB score (see Figure 2). Median scores for the unaided-only condition showed an overall downward trend, and the median for participants with a speech rating of 0 (unable to speak) under this condition was “very much” for all situations. Participants with speech ratings of 1 or 0 had higher median ratings with communication aids than without for most situations, often with higher median ratings, and greater benefits from the use of aids, for those with a speech rating of 0.

Figure 4.

The figures show the median responses to C P I B items. The x axis reads A L S F R S hyphen R speech rating and is numbered 4, 3, 2, 1, 0. The y axis shows the different response options: Not at all, a little, quite a bit, very much. Group 1 is shown in purple. Group 2 unaided is shown in light green. Group 2 all methods is shown in dark green. There are panels a through j. Panel a. C P I B item: How difficult is it for you to talk with people you know, question mark. Group 1: Not at all: 4, 3. A little: 2, 1. Group 2 unaided: Not at all: 4. A little: 3, 2. Quite a bit: 1. Very much: 0. Group 2 all methods: Not at all: 4. A little: 2, 1, 0. Panel b. CPIB item: How difficult is it for you to communicate in a small group of people, question mark. Group 1: Not at all: 4. A little: 3, 2. Quite a bit: 1. Group 2 unaided: A little: 4, 3. Quite a bit: 2. Very much: 1, 0. Group 2 all methods: Not at all: 4. A little: 3, 0. Quite a bit: 2, 1. Panel c. C P I B item: How difficult is it for you to talk with people you do not know, question mark. Group 1: Not at all: 4. A little: 3, 2. Quite a bit: 1. Group 2 unaided: A little: 4. Quite a bit: 2. Very much: 1, 0. Group 2 all methods: Not at all: 4. A little: 3, 0. Quite a bit: 2, 1. Panel d. C P I B item: How difficult is it for you to have a conversation that needs to be quick, question mark. Group 1: Not at all: 4. A little: 3, 2. Quite a bit: 1. Group 2 unaided: Not at all: 4. A little: 3. Quite a bit: 2. Very much: 1, 0. Group 2 all methods: A little: 4, 3, 2. Quite a bit: 1, 0. Panel e. C P I B item: How difficult is it for you to communicate during an emergency, question mark. Group 1: Not at all: 4. A little: 3. Quite a bit: 2. Group 2 unaided: A little: 4. Quite a bit: 3, 2. Very much: 1, 0. Group 2 all methods: Not at all: 4. Quite a bit: 3, 2, 0. Very much: 1. Panel f. C P I B item: How difficult is it for you to have a long conversation, question mark. Group 1: Not at all: 4. A little: 3, 2. Quite a bit: 1. Group 2 unaided: Quite a bit: 2. Very much: 1, 0. Group 2 all methods: A little: 4. Quite a bit: 3, 2, 1, 0. Panel g. C P I B item: How difficult is it for you to have a conversation when you are upset, question mark. Group 1: Not at all: 4. A little: 3. Quite a bit: 2. Group 2 unaided: Very much: 1, 0. Group 2 all methods: A little: 4. Quite a bit: 3, 2, 0. Very much: 1. Panel h. C P I B item: How difficult is it for you to get your turn in a fast moving conversation, question mark. Group 1: Not at all: 4, 3. A little: 2. Quite a bit: 1. Group 2 unaided: A little: 2. Very much: 1, 0. Group 2 all methods: Not at all: 4. A little: 3, 2, 0. Quite a bit: 1. Panel i. C P I B item: How difficult is it for you to communicate over video calls, question mark. Group 1: Not at all: 4, 3. A little: 2. Quite a bit: 1. Group 2 unaided: A little: 2. Very much: 1, 0. Group 2 all methods: Not at all: 4. A little: 3, 2, 0. Quite a bit: 1. Panel j. C P I B item: How difficult is it for you to have a short phone conversation, question mark. Group 1: Not at all: 4, 3. A little: 2. Very much: 1. Group 2 unaided: Very much: 1, 0. Group 2 all methods: Not at all: 4. A little: 3, 2, 1, 0.

Open in a new tab

Median response for individual CPIB items by group and ALSFRS-R speech rating. ALSFRS-R = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale; CPIB = Communicative Participation Item Bank.

Figure 5 indicates the mean increase in item scores with use of aided communication for Group 2 participants at each level of speech function, as well as the percentage of Group 2 participants who reported an increase for each situation. The size of each square marker represents the sample size for that situation and speech rating. The number in each square is the mean difference between the unaided-only and all-methods item scores, and squares are color-coded according to the degree of difference with darker blue representing greater improvement in participation with use of aided communication. While the median scores in Figure 4 illustrate trends in participation for individual situations and facilitate comparisons with the overall trends in total CPIB scores in Figure 2, the mean differences in Figure 5 highlight the disproportionate benefits of aided communication use at different levels of speech function and in different situations. Across situations, participants with speech ratings of 4 (no speech change) through 2 (intelligible with repeating) demonstrated minimal improvement in communicative participation under the all-methods condition. Those with a speech rating of 1 (combining speech and nonspeech methods) reported increases averaging at or near 1 point for the video and phone call situations, with more modest effects in the other situations. Participants with a speech rating of 0 (unable to speak) reported greater benefits from use of aided communication than the other subgroups for all 10 situations. They demonstrated relatively large improvements not only in the video and phone call situations but also in most of the other situations as well. However, even for participants with a speech rating of 0, aided communication had minimal impact on participation ratings for getting a turn in a fast-moving conversation. Only 21.2% of all Group 2 participants experienced an improvement in communicative participation with the use of aids in this situation.

Figure 5.

A table summarizing the responses to the A L S F R S hyphen R speech rating scores. The first column lists how difficult it is for you to. 1. talk with people you know. Speech rating. 4: 0.00. 3: 0.17. 2: 0.29. 1: 0.58. 0: 1.42. Percent reporting increase: 52.9 percent. 2. communicate in a small group of people. Speech rating. 4: 0.33. 3: 0.17. 2: 0.12. 1: 0.62. 0: 1.27. Percent reporting increase: 52.9 percent. 3. talk with people you do not know. Speech rating. 4: 0.33. 3: 0.67. 2: 0.29. 1: 0.54. 0: 1.18. Percent reporting increase: 51.8 percent. 4. have a conversation that needs to be quick. Speech rating. 4: negative 0.33. 3: 0.00. 2: 0.35. 1: 0.54. 0: 0.94. Percent reporting increase: 51.8 percent. 5. Communicate during an emergency. Speech rating. 4: 0.33. 3: 0.33. 2: 0.24. 1: 0.46. 0: 0.97. Percent reporting increase: 44.7 percent. 6. Have a long conversation with someone you know about a book, movie, show, or sports event. Speech rating. 4: 0.33. 3: 0.17. 2: 0.12. 1: 0.58. 0: 1.12. Percent reporting increase: 42.4 percent. 7. Have a conversation when you are upset. Speech rating. 4: 0.00. 3: 0.00. 2: 0.12. 1: 0.23. 0: 0.79. Percent reporting increase: 30.6 percent. 8. Get your turn in a fast moving conversation. Speech rating. 4: 0.67. 3: 0.33. 2: 0.00. 1: 0.23. 0: 0.30. Percent reporting increase: 21.2 percent. 9. Communicate over video calls. Speech rating. 4: 0.33. 3: 0.00. 2: 0.14. 1: 1.00. 0: 1.38. Percent reporting increase: 57.1 percent. 10. Have a short phone conversation with someone who knows you well. Speech rating. 4: 0.00. 3: 0.00. 2: 0.25. 1: 0.92. 0: 1.25. Percent reporting increase: 41.3 percent. The sample sizes are n = 3, n = 10, n = 20, and n = 33.

Open in a new tab

Mean increase in Group 2 CPIB individual item scores with use of aided communication and percentage of Group 2 participants reporting a higher score for the all-methods condition. Square size represents sample size for each situation and speech ranking. The value in each square is the mean difference between unaided-only and all-methods item scores. Squares are color-coded according to the degree of difference with darker blue representing greater improvement in participation with use of aided communication. ALSFRS-R = Revised Amyotrophic Lateral Sclerosis Functional Rating Scale; CPIB = Communicative Participation Item Bank.

Discussion

The purpose of this study was to investigate the extent of self-rated communicative participation restrictions in a large sample of PALS, the effects of aided communication on communicative participation, and the relationship between speech function and communicative participation at various stages of speech impairment and AAC use. Many participants reported considerable difficulty with communicative participation, especially those with lower levels of self-rated speech function when using unaided methods only. Use of aided communication appeared to reduce barriers to participation, with the greatest benefits observed among PALS with severe dysarthria.

The study was designed to address several research questions, beginning with, “How do PALS rate their communicative participation?” PALS are a heterogenous population, and this was reflected in the variability of communicative participation ratings reported by study participants. The wide range in total CPIB scores, even for respondents with the same degree of self-rated speech impairment (e.g., essentially the full span of the scale for those at speech rating 0), echoes findings of earlier studies (Börjesson et al., 2021; Yorkston et al., 2017) and highlights the diverse experiences of PALS and the likely influence of personal and environmental factors on communicative participation (Baylor et al., 2011; Boyle et al., 2018; Jin et al., 2021). Outliers included PALS who indicated that their speech had not changed due to ALS but had low total CPIB scores, as well as PALS who identified as anarthric but reported little or no difficulty with communicative participation in the unaided-only condition. Some with unimpaired speech may have given low ratings for their communicative participation due to factors other than dysarthria, such as fatigue, mental health, hearing loss, personality traits, or the particular speaking demands and communication partners in their lives. Those who had high unaided communicative participation ratings despite being unable to speak reported frequent use of gestures and eye movements/blinks, forms of unaided communication that can be quick and effective as long as they are recognized by communication partners. Another possibility is that some respondents were confused about the question format and reversed their responses for the unaided-only and all-methods conditions. No such confusion was noted among survey pretesters, but one participant with a speech rating of 0 gave responses in other sections of the questionnaire that indicated extreme difficulty using their communication methods and appeared to be at odds with their high total CPIB scores of 23 in the unaided-only condition and 21 in the all-methods condition. In addition, nine respondents with reduced intelligibility or anarthria (ALSFRS-R speech ratings of 2, 1, or 0) rated their communicative participation more difficult with aided communication than without. Most of these were small differences of 1–3 points in total CPIB score, though one respondent's total score was 13 points lower with aided communication. These anomalous results may have been related to confusion about the question format, but it is also possible that some PALS with speech impairments find aided communication to be more of a hindrance than a help. These outliers emphasize the individual variability in outcomes that SLPs should consider when tailoring communication intervention for PALS (Fried-Oken et al., 2015; McLaughlin et al., 2021).

Exploration of communicative participation ratings for individual situations revealed that PALS in Group 1 (reporting no use of aided communication) tended to rate their communicative participation more favorably for all individual situations than PALS in Group 2 (under both the unaided-only and all-methods conditions). However, the relative difficulty of the situations did not appear to change much between the two groups, as situations with higher communicative participation ratings for Group 1 also had relatively high ratings for Group 2. Respondents in both groups (and under both conditions for Group 2) reported the least difficulty when talking with people they know. Group 2 participants also indicated a relatively large mean participation improvement when using aided communication in this situation. Situations that were rated as relatively difficult, and with smaller mean improvements with aided communication, included those likely to be particularly demanding for many PALS, whether speaking or using AAC. Having a long conversation may be difficult due to poor breath support as well as dysarthria, and fatigue may be a factor when either speaking or using aided communication for long periods (Doyle & Phillips, 2001; McLaughlin et al., 2021). Fatigue or frustration on the part of conversation partners, or the availability or reliability of AAC tools that could support communication as a PALS gets tired, may also play a role. People who are communicating during an emergency or having a conversation when upset often cry, breathe differently, increase their speaking rate, or have difficulty organizing their thoughts or expressing themselves, all of which may further reduce intelligibility and overall communication effectiveness. In addition, communicating in upsetting or emergency situations may involve environmental barriers to participation, such as stressful, noisy, or otherwise challenging surroundings, or communication partners who are also distressed. Getting a turn in a fast-moving conversation is a notoriously difficult situation for individuals with communication impairments, as communication with either dysarthric speech or AAC methods can be slow and effortful. Communication partners may not wait for a person who uses AAC to compose or select a message or may talk over someone whose speech is quiet or difficult to understand (Broomfield et al., 2022). The two situations with the worst communicative participation ratings, having a conversation when you are upset and getting your turn in a fast-moving conversation, also demonstrated the smallest improvements with use of aided communication and the smallest proportion of Group 2 respondents reporting an improvement (30.6% and 21.2%, respectively). Not all respondents reported taking part in phone or video calls (response rates were 79.1% and 84.5%, respectively), but communicative participation ratings for these situations were high among those who did. Video calls represented the situation with the greatest mean score increase with use of aided communication for participants with speech ratings of 1 (combining speech and nonspeech methods) or 0 (unable to speak), and the largest percentage of Group 2 respondents reporting an increase (57.1%).

We also explored the question, “Among those who use communication aids, is there a difference between communicative participation ratings with and without those aids?” Results indicate that aided communication can significantly improve self-rated communicative participation for PALS with dysarthria. Those with the lowest ratings of speech function reported the greatest benefit, with increases of up to 19 points on the 24-point modified CPIB short form and large effect sizes. Among participants who use aided communication methods, median communicative participation ratings were higher with those aids than without for each situation included in the questionnaire. Some participants reported large improvements in participation for individual situations with use of aided communication, with responses shifting from “very” difficult to “a little” or “not at all” difficult (see Figure 3). Aided communication was least helpful for situations that were already rated more difficult than others, such as getting your turn in a fast-moving conversation and having a conversation when you are upset.

Our final research question was, “What is the relationship between self-rated speech function and communicative participation for PALS, and how does the use of aided communication affect this relationship?” Self-rated level of speech impairment was a significant explanatory variable for communicative participation ratings both with and without aided communication, consistent with earlier findings for PALS who use natural speech (Yorkston et al., 2017) and for adults with communication impairments of other etiologies (Baylor et al., 2010; Jin et al., 2021; McAuliffe et al., 2017; Yorkston et al., 2014). For PALS in Group 1 and for those in Group 2 when using unaided communication only, mean total CPIB scores decreased with lower ALSFRS-R speech function scores. However, for Group 2 respondents using aided communication, mean total CPIB scores were higher at speech rating 0 (unable to speak) than at speech rating 1 (combining speech and nonspeech methods), both overall and for individual situations. This finding was surprising given the steady decline in total CPIB scores with speech ratings in the other group and condition, and between speech ratings of 4 (no speech change) and 1 in the all-methods condition. The difference between speech ratings of 1 and 0 reflects a shift from using speech in combination with nonspeech methods to being unable to speak at all. PALS with a speech rating of 1 may be relatively inexperienced with AAC or may be resistant to using it, preferring to use only speech in some situations even if it impedes participation. Those who report being unable to speak have likely spent more time living with dysarthria and may benefit from additional time spent learning and using aided communication methods and compensatory strategies (McNaughton et al., 2018; Rackensperger et al., 2005). Their family members, friends, and caregivers may be more experienced and effective communication partners. In addition, these PALS may have adjusted their expectations for communicative participation or have different perspectives on what it means for communication to be “difficult.”

AAC has long been recognized as a way for PALS to maintain the ability to communicate as their speech function worsens. This study indicates that it is an important support for communicative participation as well and reinforces the need for PALS to receive timely AAC education, treatment, and equipment (McNaughton et al., 2018). Some PALS may benefit from additional education about how ALS symptoms can affect communicative participation, the potential functional and emotional consequences of these changes, and how AAC can help. Assessing PALS' self-reported communicative participation in various situations, with and without communication aids, may help clinicians to gauge the success of AAC intervention and set meaningful treatment goals. Even with the use of AAC, communicative participation appears to become more difficult as speech function declines. With this in mind, additional interventions may be warranted to support participation, such as modifications to the environment or education and training for communication partners.

Limitations

This study had several limitations. Survey data were collected during the COVID-19 pandemic, which may have affected PALS' responses or their opportunities to engage in various communicative participation situations. The convenience sample of participants who elected to complete this online questionnaire may not be representative of the full population of individuals with ALS. PALS from racial and ethnic minority groups appear to be underrepresented (Kaye et al., 2018; Rechtman et al., 2015), and the sample includes a larger proportion of individuals with postgraduate degrees than the general population (United States Census Bureau, 2022). In addition, PALS with especially positive or negative experiences related to communication may have been more motivated to share those experiences, whereas those with more severe physical disabilities or less familiarity with or access to technology (who may also have more difficulty with some AAC options) may have been less likely to participate. As such, it is possible that selection bias affected the results. Although initial factor analysis and item response theory results were promising (see Supplemental Material S2), the modified CPIB short form used in this study (including new instructions and question formatting for respondents who use aided communication) has not yet been fully validated, nor has the original CPIB been validated for individuals who use AAC. Due to item set and wording changes, the T-score conversion table developed for the original CPIB short form could not be used in this study, limiting the ability to compare the current results with those of other studies using the original short form.

Future Directions

Results suggest several areas for future research. This study used a cross-sectional design to explore self-rated communicative participation at different stages of speech severity, but these data do not inform us as to the trajectory or experiences of individuals as they go through this process. Longitudinal studies that track changes in the communicative participation of a random sample of PALS over time would provide a better understanding of the journey through these stages and would support clinical intervention to maximize participation as individuals change. A prospective study of communicative participation before, during, and after AAC intervention would provide more detail about how AAC improves participation and about remaining barriers that might be addressed. Qualitative research may be a useful tool to investigate how AAC use affects communicative participation, including reasons for the apparent improvement between PALS who are combining speech and nonspeech methods and those who are unable to speak. Patient-reported, participation-focused outcomes as measured by the CPIB could also be compared to function-oriented metrics such as speech intelligibility and speaking rate. Finally, the CPIB instructions and question formatting used with Group 2 in this study (to elicit ratings for communicative participation with and without aided communication) might be expanded to all CPIB items and validated for administration to PALS and others who use AAC. The modified wording used with both groups (referring to level of difficulty rather than degree of interference) is currently under analysis for calibrating a new version of the CPIB, 4 and these analyses should be extended specifically for PALS. Further exploration of communicative participation for PALS, and how to measure it, will support improved treatment outcomes. Communication intervention for PALS must focus not only on maintaining function but also on ensuring that individuals are able to actively participate in the world around them and in the many and varied communication situations they encounter every day.

Data Availability Statement

The data sets generated and analyzed during this study are available from the corresponding author on reasonable request.

Supplementary Material

Supplemental Material S1. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) questions used in the questionnaire, listed in the order presented.
Click here for additional data file. (567.4KB, pdf)
Supplemental Material S2. Structure and characteristics of the adapted Communicative Participation Item Bank (CPIB; Baylor et al., 2013) scale.
Click here for additional data file. (817.9KB, pdf)
Supplemental Material S3. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) instructions and example question for Group 1.
Click here for additional data file. (217.8KB, jpg)
Supplemental Material S4. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) instructions and example question for Group 2.
Click here for additional data file. (379.3KB, jpg)
Supplemental Material S5. Descriptive statistics for total eight-item Communicative Participation Item Bank (CPIB; Baylor et al., 2013) score for Group 1 and for each condition for Group 2, score increases for Group 2 when using communication aids, and effect sizes for those differences, by Revised amyotrophic lateral sclerosis Functional Rating Scale (Bakker et al., 2020; Cedarbaum et al., 1999) speech rating.
Click here for additional data file. (786.6KB, pdf)

Acknowledgments

This work was supported by the National Institutes of Health under Grant DC009834 (to Melanie Fried-Oken). The authors would like to thank Melanie Fried-Oken, Wayne Wakeland, Kerth O'Brien, and Joe Fusion for their suggestions during study design and data analysis and their feedback on an earlier version of this article.

Funding Statement

This work was supported by the National Institutes of Health under Grant DC009834 (to Melanie Fried-Oken).

Footnotes

1

Individuals older than 89 years were excluded to maintain respondent anonymity, as ages over 89 years are considered identifiers under the U.S. Health Insurance Portability and Accountability Act Privacy Rule.

2

Some PALS who reported minimal speech change on the self-administered ALSFRS-R selected one or more aided communication methods when asked what they used for face-to-face communication. Later in the questionnaire, respondents were asked how frequently they used each of the methods they selected on the face-to-face communication question. Respondents who indicated that they never used any aided methods for face-to-face communication and/or gave the same rating for the unaided and all-methods conditions for all CPIB items (n = 26) were assumed to have misunderstood the earlier question and were assigned to Group 1.

3

Although the original CPIB short form has been calibrated to allow reporting of standardized T scores (Baylor et al., 2013), this scoring method was not used in this study due to the changes to the item set and instructions. Item-total correlations ranged between 0.88 and 0.96 for the eight-item set, so equal item weights were a reasonable working assumption for the score.

4

Contact author Carolyn Baylor for updated information.

References

  1. Bakker, L. A. , Schröder, C. D. , Tan, H. H. G. , Vugts, S. M. A. G. , van Eijk, R. P. A. , van Es, M. A. , Visser-Meily, J. M. A. , & van den Berg, L. H. (2020). Development and assessment of the inter-rater and intra-rater reproducibility of a self-administration version of the ALSFRS-R. Journal of Neurology, Neurosurgery, & Psychiatry, 91(1), 75–81. https://doi.org/10.1136/jnnp-2019-321138 [DOI] [PubMed] [Google Scholar]
  2. Ball, L. J. , Beukelman, D. R. , & Pattee, G. L. (2004). Communication effectiveness of individuals with amyotrophic lateral sclerosis. Journal of Communication Disorders, 37(3), 197–215. https://doi.org/10.1016/j.jcomdis.2003.09.002 [DOI] [PubMed] [Google Scholar]
  3. Barohn, R. J. , Fink, J. K. , Heiman-Patterson, T. , Huey, E. D. , Murphy, J. , Statland, J. M. , Turner, M. R. , & Elman, L. (2020). The clinical spectrum of primary lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 21(Suppl. 1), 3–10. https://doi.org/10.1080/21678421.2020.1837178 [DOI] [PubMed] [Google Scholar]
  4. Baylor, C. , Burns, M. , Eadie, T. , Britton, D. , & Yorkston, K. (2011). A qualitative study of interference with communicative participation across communication disorders in adults. American Journal of Speech-Language Pathology, 20(4), 269–287. https://doi.org/10.1044/1058-0360(2011/10-0084) [DOI] [PMC free article] [PubMed] [Google Scholar]
  5. Baylor, C. , Yorkston, K. , Bamer, A. , Britton, D. , & Amtmann, D. (2010). Variables associated with communicative participation in people with multiple sclerosis: A regression analysis. American Journal of Speech-Language Pathology, 19(2), 143–153. https://doi.org/10.1044/1058-0360(2009/08-0087) [DOI] [PMC free article] [PubMed] [Google Scholar]
  6. Baylor, C. , Yorkston, K. , Eadie, T. , Kim, J. , Chung, H. , & Amtmann, D. (2013). The Communicative Participation Item Bank (CPIB): Item bank calibration and development of a disorder-generic short form. Journal of Speech, Language, and Hearing Research, 56(4), 1190–1208. https://doi.org/10.1044/1092-4388(2012/12-0140) [DOI] [PMC free article] [PubMed] [Google Scholar]
  7. Beukelman, D. R. , Fager, S. , & Nordness, A. (2011). Communication support for people with ALS. Neurology Research International, 2011, 714693. https://doi.org/10.1155/2011/714693 [DOI] [PMC free article] [PubMed] [Google Scholar]
  8. Beukelman, D. R. , & Light, J. C. (2020). Augmentative and alternative communication: Supporting children and adults with complex communication needs (5th ed.). Brookes. [Google Scholar]
  9. Börjesson, M. S. , Hartelius, L. , & Laakso, K. (2021). Communicative participation in people with amyotrophic lateral sclerosis. Folia Phoniatrica et Logopaedica, 73(2), 101–108. https://doi.org/10.1159/000505022 [DOI] [PMC free article] [PubMed] [Google Scholar]
  10. Boyle, M. P. , Beita-Ell, C. , Milewski, K. M. , & Fearon, A. N. (2018). Self-esteem, self-efficacy, and social support as predictors of communicative participation in adults who stutter. Journal of Speech, Language, and Hearing Research, 61(8), 1893–1906. https://doi.org/10.1044/2018_JSLHR-S-17-0443 [DOI] [PubMed] [Google Scholar]
  11. Broomfield, K. , Harrop, D. , Jones, G. L. , Sage, K. , & Judge, S. (2022). A qualitative evidence synthesis of the experiences and perspectives of communicating using augmentative and alternative communication (AAC). Disability and Rehabilitation: Assistive Technology. Advance online publication. https://doi.org/10.1080/17483107.2022.2105961 [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Brownlee, A. , & Bruening, L. M. (2012). Methods of communication at end of life for the person with amyotrophic lateral sclerosis. Topics in Language Disorders, 32(2), 168–185. https://doi.org/10.1097/TLD.0b013e31825616ef [Google Scholar]
  13. Cedarbaum, J. M. , Stambler, N. , Malta, E. , Fuller, C. , Hilt, D. , Thurmond, B. , Nakanishi, A. , & BDNF ALS Study Group (Phase III) . (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. Journal of the Neurological Sciences, 169(1–2), 13–21. https://doi.org/10.1016/S0022-510X(99)00210-5 [DOI] [PubMed] [Google Scholar]
  14. Doyle, M. , & Phillips, B. (2001). Trends in augmentative and alternative communication use by individuals with amyotrophic lateral sclerosis. Augmentative and Alternative Communication, 17(3), 167–178. https://doi.org/10.1080/aac.17.3.167.178 [Google Scholar]
  15. Eadie, T. L. , Yorkston, K. M. , Klasner, E. R. , Dudgeon, B. J. , Deitz, J. C. , Baylor, C. R. , Miller, R. M. , & Amtmann, D. (2006). Measuring communicative participation: A review of self-report instruments in speech-language pathology. American Journal of Speech-Language Pathology, 15(4), 307–320. https://doi.org/10.1044/1058-0360(2006/030) [DOI] [PMC free article] [PubMed] [Google Scholar]
  16. Felgoise, S. H. , Zaccheo, V. , Duff, J. , & Simmons, Z. (2016). Verbal communication impacts quality of life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 17(3–4), 179–183. https://doi.org/10.3109/21678421.2015.1125499 [DOI] [PubMed] [Google Scholar]
  17. Fried-Oken, M. , Fox, L. , Rau, M. T. , Tullman, J. , Baker, G. , Hindal, M. , Wile, N. , & Lou, J.-S. (2006). Purposes of AAC device use for persons with ALS as reported by caregivers. Augmentative and Alternative Communication, 22(3), 209–221. https://doi.org/10.1080/07434610600650276 [DOI] [PubMed] [Google Scholar]
  18. Fried-Oken, M. , Mooney, A. , & Peters, B. (2015). Supporting communication for patients with neurodegenerative disease. NeuroRehabilitation, 37(1), 69–87. https://doi.org/10.3233/NRE-151241 [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Glass, G. V. (1976). Primary, secondary, and meta-analysis of research. Educational Researcher, 5(10), 3–8. https://doi.org/10.3102/0013189X005010003 [Google Scholar]
  20. Hanson, E. K. (2011). Dysarthria in amyotrophic lateral sclerosis: A systematic review of characteristics, speech treatment, and augmentative and alternative communication options. Journal of Medical Speech-Language Pathology, 19(3), 12–30. [Google Scholar]
  21. Hayfield, T. , & Racine, J. S. (2008). Nonparametric econometrics: ThenpPackage. Journal of Statistical Software, 27(5), 1–32. https://doi.org/10.18637/jss.v027.i05 [Google Scholar]
  22. Hedges, L. V. (1981). Distribution theory for Glass's estimator of effect size and related estimators. Journal of Educational Statistics, 6(2), 107–128. https://doi.org/10.3102/10769986006002107 [Google Scholar]
  23. Jin, J. L. , Baylor, C. , & Yorkston, K. (2021). Predicting communicative participation in adults across communication disorders. American Journal of Speech-Language Pathology, 30(3S), 1301–1313. https://doi.org/10.1044/2020_AJSLP-20-00100 [DOI] [PMC free article] [PubMed] [Google Scholar]
  24. Kaye, W. E. , Wagner, L. , Wu, R. , & Mehta, P. (2018). Evaluating the completeness of the national ALS registry, United States. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 19(1–2), 112–117. https://doi.org/10.1080/21678421.2017.1384021 [DOI] [PMC free article] [PubMed] [Google Scholar]
  25. Light, J. (1988). Interaction involving individuals using augmentative and alternative communication systems: State of the art and future directions. Augmentative and Alternative Communication, 4(2), 66–82. https://doi.org/10.1080/07434618812331274657 [Google Scholar]
  26. Linse, K. , Aust, E. , Joos, M. , & Hermann, A. (2018). Communication matters—Pitfalls and promise of hightech communication devices in palliative care of severely physically disabled patients with amyotrophic lateral sclerosis. Frontiers in Neurology, 9, 603. https://doi.org/10.3389/fneur.2018.00603 [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. Linse, K. , Rüger, W. , Joos, M. , Schmitz-Peiffer, H. , Storch, A. , & Hermann, A. (2018). Usability of eyetracking computer systems and impact on psychological wellbeing in patients with advanced amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 19(3–4), 212–219. https://doi.org/10.1080/21678421.2017.1392576 [DOI] [PubMed] [Google Scholar]
  28. Londral, A. , Pinto, A. , Pinto, S. , Azevedo, L. , & De Carvalho, M. (2015). Quality of life in amyotrophic lateral sclerosis patients and caregivers: Impact of assistive communication from early stages. Muscle & Nerve, 52(6), 933–941. https://doi.org/10.1002/mus.24659 [DOI] [PubMed] [Google Scholar]
  29. Maier, A. , Holm, T. , Wicks, P. , Steinfurth, L. , Linke, P. , Münch, C. , Meyer, R. , & Meyer, T. (2012). Online assessment of ALS functional rating scale compares well to in-clinic evaluation: A prospective trial. Amyotrophic Lateral Sclerosis, 13(2), 210–216. https://doi.org/10.3109/17482968.2011.633268 [DOI] [PMC free article] [PubMed] [Google Scholar]
  30. Malek, A. M. , Stickler, D. E. , Antao, V. C. , & Horton, D. K. (2014). The national ALS registry: A recruitment tool for research. Muscle & Nerve, 50(5), 830–834. https://doi.org/10.1002/mus.24421 [DOI] [PMC free article] [PubMed] [Google Scholar]
  31. McAuliffe, M. J. , Baylor, C. R. , & Yorkston, K. M. (2017). Variables associated with communicative participation in Parkinson's disease and its relationship to measures of health-related quality-of-life. International Journal of Speech-Language Pathology, 19(4), 407–417. https://doi.org/10.1080/17549507.2016.1193900 [DOI] [PMC free article] [PubMed] [Google Scholar]
  32. McKelvey, M. , Evans, D. L. , Kawai, N. , & Beukelman, D. (2012). Communication styles of persons with ALS as recounted by surviving partners. Augmentative and Alternative Communication, 28(4), 232–242. https://doi.org/10.3109/07434618.2012.737023 [DOI] [PubMed] [Google Scholar]
  33. McLaughlin, D. , Peters, B. , McInturf, K. , Eddy, B. , Kinsella, M. , Mooney, A. , Deibert, T. , Montgomery, K. , & Fried-Oken, M. (2021). Decision-making for access to AAC technologies in late stage ALS. In Ogletree B. T. (Ed.), Augmentative and alternative communication: Challenges and solutions (pp. 169–199). Plural Publishing. [Google Scholar]
  34. McNaughton, D. , Giambalvo, F. , Kohler, K. , Nazareth, G. , Caron, J. , & Fager, S. (2018). “Augmentative and alternative communication (AAC) will give you a voice”: Key practices in AAC assessment and intervention as described by persons with amyotrophic lateral sclerosis. Seminars in Speech and Language, 39(05), 399–415. https://doi.org/10.1055/s-0038-1669992 [DOI] [PubMed] [Google Scholar]
  35. Munan, M. , Luth, W. , Genuis, S. K. , Johnston, W. S. , & MacIntyre, E. (2021). Transitions in amyotrophic lateral sclerosis: Patient and caregiver experiences. Canadian Journal of Neurological Sciences, 48(4), 496–503. https://doi.org/10.1017/cjn.2020.240 [DOI] [PubMed] [Google Scholar]
  36. Murphy, J. (2004). Communication strategies of people with ALS and their partners. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 5(2), 121–126. https://doi.org/10.1080/14660820410020411 [DOI] [PubMed] [Google Scholar]
  37. Page, A. D. , & Yorkston, K. M. (2022). Communicative participation in dysarthria: Perspectives for management. Brain Sciences, 12(4), 420. https://doi.org/10.3390/brainsci12040420 [DOI] [PMC free article] [PubMed] [Google Scholar]
  38. Peters, B. (2022). Augmentative and alternative communication use, service delivery experiences, and communicative participation for people with ALS [Doctoral dissertation]. Portland State University. [Google Scholar]
  39. Peters, B. , O'Brien, K. , & Fried-Oken, M. (2022). A recent survey of augmentative and alternative communication use and service delivery experiences of people with amyotrophic lateral sclerosis in the United States. Disability and Rehabilitation: Assistive Technology. Advance online publication. https://doi.org/10.1080/17483107.2022.2149866 [DOI] [PubMed] [Google Scholar]
  40. Racine, J. , & Li, Q. (2004). Nonparametric estimation of regression functions with both categorical and continuous data. Journal of Econometrics, 119(1), 99–130. https://doi.org/10.1016/S0304-4076(03)00157-X [Google Scholar]
  41. Rackensperger, T. , Krezman, C. , Mcnaughton, D. , Williams, M. B. , & D'Silva, K. (2005). “When I first got it, I wanted to throw it off a cliff”: The challenges and benefits of learning AAC technologies as described by adults who use AAC. Augmentative and Alternative Communication, 21(3), 165–186. https://doi.org/10.1080/07434610500140360 [Google Scholar]
  42. R Core Team. (2019). R: A language and environment for statistical computing. R Foundation for Statistical Computing. [Google Scholar]
  43. Rechtman, L. , Jordan, H. , Wagner, L. , Horton, D. K. , & Kaye, W. (2015). Racial and ethnic differences among amyotrophic lateral sclerosis cases in the United States. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 16(1–2), 65–71. https://doi.org/10.3109/21678421.2014.971813 [DOI] [PMC free article] [PubMed] [Google Scholar]
  44. Teixeira, J. , Jin, J. L. , Baylor, C. , & Nuara, M. (2023). Modifying the Communicative Participation Item Bank (CPIB) for individuals receiving gender-affirming communication care: Stakeholder feedback from cognitive interviews. Journal of Communication Disorders, 102, 106312. https://doi.org/10.1016/j.jcomdis.2023.106312 [DOI] [PubMed] [Google Scholar]
  45. United States Census Bureau. (2022). Census Bureau releases new educational attainment data. United States Census Bureau. https://www.census.gov/newsroom/press-releases/2022/educational-attainment.html [Google Scholar]
  46. Wickham, H. (2016). ggplot2: Elegant graphics for data analysis. Springer-Verlag. https://doi.org/10.1007/978-3-319-24277-4 [Google Scholar]
  47. Wilson, D. J. (2019). The harmonic mean p-value for combining dependent tests. Proceedings of the National Academy of Sciences, 116(4), 1195–1200. https://doi.org/10.1073/pnas.1814092116 [DOI] [PMC free article] [PubMed] [Google Scholar]
  48. Yorkston, K. M. , Baylor, C. , & Amtmann, D. (2014). Communicative participation restrictions in multiple sclerosis: Associated variables and correlation with social functioning. Journal of Communication Disorders, 52, 196–206. https://doi.org/10.1016/j.jcomdis.2014.05.005 [DOI] [PMC free article] [PubMed] [Google Scholar]
  49. Yorkston, K. M. , Baylor, C. , & Mach, H. (2017). Factors associated with communicative participation in amyotrophic lateral sclerosis. Journal of Speech, Language, and Hearing Research, 60(6S), 1791–1797. https://doi.org/10.1044/2017_JSLHR-S-16-0206 [DOI] [PMC free article] [PubMed] [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplemental Material S1. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) questions used in the questionnaire, listed in the order presented.
Click here for additional data file. (567.4KB, pdf)
Supplemental Material S2. Structure and characteristics of the adapted Communicative Participation Item Bank (CPIB; Baylor et al., 2013) scale.
Click here for additional data file. (817.9KB, pdf)
Supplemental Material S3. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) instructions and example question for Group 1.
Click here for additional data file. (217.8KB, jpg)
Supplemental Material S4. Communicative Participation Item Bank (CPIB; Baylor et al., 2013) instructions and example question for Group 2.
Click here for additional data file. (379.3KB, jpg)
Supplemental Material S5. Descriptive statistics for total eight-item Communicative Participation Item Bank (CPIB; Baylor et al., 2013) score for Group 1 and for each condition for Group 2, score increases for Group 2 when using communication aids, and effect sizes for those differences, by Revised amyotrophic lateral sclerosis Functional Rating Scale (Bakker et al., 2020; Cedarbaum et al., 1999) speech rating.
Click here for additional data file. (786.6KB, pdf)

Data Availability Statement

The data sets generated and analyzed during this study are available from the corresponding author on reasonable request.

Articles from American Journal of Speech-Language Pathology are provided here courtesy of American Speech-Language-Hearing Association

RESOURCES