Communicative Participation Item Bank Research Articles

Development and validation of MyCommunication—Adults, a self‐report communicative participation measure

AbstractBackgroundPeople with communication problems experience challenges in participation. Optimizing communicative participation for this population is an important outcome of speech and language therapy. Participation experiences are best assessed from the patient's perspective, using a patient‐reported outcome measure (PROM). The Communicative Participation Item Bank (CPIB) has been developed to identify perceived problems in communicative participation. However, previous research has shown that the item bank does not cover all domains and concepts of communicative participation, contains general communication items, and is not suitable for all people with communication problems.AimsTo develop a comprehensive PROM aimed at measuring communicative participation for all adults with communication problems and test its content validity.Methods & ProceduresAn initial pool of 242 items was based on three sources: relevant content from an earlier literature review and concept elicitation study, and the translation of the items of the CPIB. This item pool was pilot‐tested for comprehensibility and comprehensiveness using cognitive debriefing interviews in adults with different communication problems (speech, language, voice, hearing and cognitive communication disorders). This resulted in a second version of the item bank. The content validity of this version was tested in a group of professionals. The last (third) version of 133 items was tested for content validity in a second, new group of adults with various communication problems.Outcomes & ResultsThe initial pool of 242 items was developed and pilot‐tested in 27 adults with different communication problems. After modifications, 161 items remained, which were tested in a content validity study with 25 people with different communication problems and five professionals (in the field of speech and language therapy and speech and language research). The professionals considered 91.9% of the item bank relevant and comprehensible, and comprehensive by adding two items. The item bank was then considered relevant, comprehensible and comprehensive by the group of adults with communication problems. A total of 133 items remained in the item bank, related to the International Classification of Functioning, Disability and Health (ICF) Activities and Participation domains ‘mobility’, ‘self‐care’, ‘domestic life’, ‘interpersonal interactions and relationships’, ‘major life areas’ and ‘community, social and civic life’.Conclusions & ImplicationsMyCommunication—Adults is an item bank for measuring communicative participation in adults with communication difficulties. The next step is to test the psychometric properties of the item bank, in order to establish a final item bank. The refined description of the construct of communicative participation can already be used for participation‐focused goal‐setting between individuals with communication problems and speech and language therapists.WHAT THIS PAPER ADDSWhat is already known on the subject The CPIB was developed to measure communicative participation in community‐dwelling adults with communication problems. The item bank does not cover all domains and concepts of communicative participation, contains general communication items and not all questions seem to be relevant for specific target groups (e.g., hearing population).What this paper adds to the existing knowledge This study presents a refined description of the construct of communicative participation and the development of a new comprehensive PROM aimed at measuring this construct for all adults with communication difficulties. The development of the PROM is based on a previously conducted literature review and concept elicitation study. This study describes the development process of this new PROM, called MyCommunication‐Adults, and the assessment of its content validity.What are the potential or actual clinical implications of this work? The refined description of the construct of communicative participation can be used for participation‐focused goal‐setting between individuals with communication problems and speech and language therapists.

Higher Frequency of Stuttered Disfluencies Negatively Affects Communicative Participation in Parkinson's Disease.

Up to 90% of people with Parkinson's disease (PD) develop communication difficulties over the course of the disease. While the negative effect of dysarthria on communicative participation has been well-documented, the impact of the occurrence of acquired stuttered disfluencies on communication in different speech situations is unknown. This study aimed to determine if the frequency of occurrence of stuttered disfluencies affects communicative participation in individuals with PD, and whether such a relationship is mediated by examiner- and self-rated measures of disease severity. Conversational speech samples were collected from 100 people with PD aged 53-91 years to calculate the frequency of occurrence of stuttered disfluencies. Participants completed the Communicative Participation Item Bank to assess participation in communicative situations. Information on overall speech, cognitive, and motor performance was collected using both self-rated and examiner-rated methods. Participants with PD presented with 0.2%-9.9% stuttered disfluencies during conversation. Overall, participants with PD reported their communicative participation to be impacted "a little" (19.5 ± 7.0), but there was considerable interindividual variation. A higher frequency of stuttered disfluencies was associated with significantly lower communicative participation (ρ = -0.32, p < .01). In addition, examiner-rated frequency of stuttered disfluencies (p < .01), speech (p < .01), and motor severity (p = .04) were all significant predictors of communicative participation. Using self-ratings, speech (p < .01) and cognitive (p < .01) measures significantly predicted communicative participation. In people with PD, communicative participation was significantly worse for those with a higher frequency of stuttered disfluencies. Examiner- and self-rated measures of disease severity contributed different information related to communicative constraints. Together, these results highlight the importance of individualized and holistic speech therapy that considers a wide variety of symptoms, including stuttered disfluencies, to ensure positive functional outcomes. https://doi.org/10.23641/asha.26850169.

Montreal Cognitive Assessment Scores Do Not Associate With Communication Challenges Reported by Adults With Alzheimer's Disease or Parkinson's Disease.

Screening for cognitive-communication challenges in people with Alzheimer's disease (AD) or Parkinson's disease (PD) may benefit from multiple kinds of information about the client (e.g., patient-reported, performance-based). The purposes of this report are (a) to describe, using recently published score range descriptors (e.g., "mild," "moderate"), the patient-reported communication challenges of people with AD or PD using the Communicative Participation Item Bank (CPIB) and the Aphasia Communication Outcome Measure (ACOM); and (b) to examine the relationships between the performance-based Montreal Cognitive Assessment (MoCA), a cognitive screener, and patient-reported CPIB and ACOM scores. Participants were a convenience sample of 49 community-dwelling adults with AD or PD. Participants completed the measures in person as part of a larger assessment battery. MoCA total scores ranged from 7 to 28. CPIB T-scores fell in the following ranges: 31% were "within normal limits," 57% reflected "mildly" restricted participation, and 12% reflected "moderately" restricted participation. ACOM T-scores fell in the following ranges: 50% were either "within normal limits" or reflected "mild" impairment, 29% reflected "mild-moderately" impaired functional communication, and 21% reflected "moderately" impaired functional communication. There were only weak and nonsignificant correlations between T-scores on the ACOM or CPIB and scores on the MoCA, and there were no group differences on the ACOM or CPIB between individuals who screened positive versus negative on the MoCA. When screening individuals with AD or PD, patient-reported communication challenges seem to be complementary to information provided by the MoCA and perhaps most useful in screening for mild communication challenges.

The Communicative Participation Item Bank-Gender-Diverse Version: Item Bank Calibration and Short Form.

The purpose of this study was to calibrate an item set for a new version of the Communicative Participation Item Bank (CPIB) specifically for use with gender-diverse clients. This new version contains a new item stem as well as other minor wording changes from the original CPIB in order to be acceptable to gender-diverse respondents. Survey data on 47 candidate items were collected from 434 transgender individuals: 219 assigned female at birth (AFAB) and 215 assigned male at birth (AMAB). Item response theory analyses included evaluation of unidimensionality, local dependence, fit to a graded response model, and differential item functioning (DIF) between AFAB and AMAB respondents. The original set of 47 items was unidimensional, but 16 items were removed due to local dependence, resulting in a final item bank of 31 items. There was no evidence of DIF between AFAB and AMAB participants. Reliability of the full item bank is good (i.e., > 0.8) between T scores of 20 and 76 and high (i.e., > 0.9) between T scores of 20 and 68. The short form had good reliability (i.e., > 0.8) between T scores of 24 and 64. The Communicative Participation Item Bank-Gender-Diverse (CPIB-GD) version provides a new option for person-reported outcome measurement with gender-diverse clients. Clinicians are cautioned to use only the new CPIB-GD with gender-diverse clients, and not the original CPIB due to unacceptable wording in the original version for this population. The original CPIB remains valid and appropriate for the populations for which it was developed. https://doi.org/10.23641/asha.24993309.

Evaluation and modification of the 10‐item short form Communicative Participation Item Bank for persons with primary progressive aphasia

AbstractBackgroundPrimary progressive aphasia (PPA) is a dementia syndrome characterized by language and communication impairments with relative sparing of other cognitive domains. Given the language difficulties associated with PPA, it is important to develop outcome measures relevant to the communication experiences of persons with PPA (PwPPA). The 10‐item Communicative Participation Item Bank (CPIB) has been used as a measure of communication participation in PPA. However, the CPIB was validated as a disorder‐agnostic measure of communication participation and the content validity has not been evaluated for PPA. The purpose of this study is to evaluate the face and content validity of the 10‐item CPIB for individuals with PPA and their communication partners (CP).MethodPhase one of this project focused on conducting cognitive interviews with participants who had previously completed the CPIB during the Communication Bridge randomized controlled trial (NCT03371706). PwPPAs and CPs each completed the CPIB during a semi‐structured cognitive interview designed to evaluate the measure format, instructions, response options, item comprehension, and relevance of each item to PwPPA experiences. To evaluate content validity, participants were asked open‐ended questions to elicit relevant communication participation experiences missing from the questionnaire. Responses to closed‐ended questions (e.g., clarity, relevance) were tabulated and open‐ended responses (e.g., item comprehension, missing content) were analyzed via thematic analysis. Summaries of measure format, instructions, and response options were generated, as well as item‐level findings regarding comprehension, relevance, and missing content.ResultPreliminary findings revealed both PwPPAs and CPs: a) considered the instructions to be clear (N = 12, 100%); b) recommended adding a fifth response option (e.g., “Somewhat) to better represent the range of communication situations; c) reported all items except one (“persuade…to see a different point of view”) were relevant (N≥10; ≥83%, for 9 items); and d) talking on the phone was the most reported missing communicative participation situation (N = 8; 66%). Further, 2 of 5 PwPPAs reported talking over videochat, and 2 of 5 CPs reported email/texting as missing.ConclusionPreliminary findings indicate that modifications to the 10‐item CPIB short form may be needed for use with PwPPA and their CPs to more fulsomely capture communication participation in PPA.

Reframing transgender communication in gender-affirming communication care: Comfort and confidence are the main goals

Purpose To understand the communicative participation experiences of transgender people through a qualitative inquiry, and to address similarities and differences in experiences across genders. Method This study was a secondary analysis of interview data gathered for modifying the Communicative Participation Item Bank for use with transgender populations. Fourteen transgender participants attended individual qualitative interviews. During the interview, participants shared their communication experiences in various situations and the availability of social supports related to communication. Qualitative content analysis was used to develop themes and subthemes from the data. Result Three themes emerged from the data: the participants’ priorities for comfort, safety, and authenticity; the use of an internal “checklist” to optimise their communication; and changes in attitudes towards communication over time. Across themes, participants shared core communication experiences regardless of gender identities. Conclusion The findings support prior research on voice-related communication experiences of transgender people. A key finding is the notion that communication success is influenced by sociocultural contexts and the physical environment beyond their communication presentation. To achieve targeted comfort and satisfaction in communication, healthcare professionals need to consider the transgender client’s communication contexts, and incorporate a life-participation approach to gender-affirming voice and communication training.

Communicative participation outcomes in individuals with Parkinson's disease receiving standard care speech-language therapy services in community settings.

The Communicative Participation Item Bank (CPIB) is a patient-reported outcome measure (PROM) designed to measure the extent of interference, or difficulty, experienced by adults with communication disorders participating in their day-to-day communication activities. To date, there is limited evidence regarding sensitivity of the CPIB for capturing change with intervention in people with Parkinson's disease (PwPD). The purpose of this study was to examine the following measurement properties of the CPIB in PwPD who received community-based, standard care, speech-language therapy focusing on motor speech concerns: Change over time between treatment and observation groups, comparison to patient-defined ideal and satisfactory targets, comparison of static short form to computerised adaptive testing (CAT), comparison of self to proxy-rated scores, and comparison to other common PROMs. Forty-six PwPD (20 treatment/26 observation) completed data collection upon enrolment (pre-treatment) and 6 months later. In addition to the CPIB, PROMs included the Voice Handicap Index 10-item short form (VHI-10), PROMIS Global Health-Related Quality of Life, Levels of Speech Usage, self-rated speech severity, and Patient Health Questionnaire-9 (PHQ-9). Participants also engaged in qualitative interviews. Forty-four family members completed proxy CPIB ratings. There were no significant differences between treatment and observation groups on the CPIB pre-treatment, but there were significant differences post-treatment. The differences appeared to be largely due to significant gains in the treatment group. No participants reached their ideal CPIB target, and few reached their satisfactory target. Static CPIB short form and CAT scores were not significantly different, with an average of five CAT items administered per participant. Overall group similarities between patient and proxy scores may have obscured wide variability across individual patient-proxy pairs. Associations between CPIB and VHI-10, health-related quality of life, self-reported speech severity, and depression ranged from weak to moderate. The CPIB appears to be sensitive to capturing change with intervention, and similar results are obtained with the static short form and CAT formats. One clinical caution is that even with gains observed in the treatment group, no participants obtained their ideal communicative participation goals, and few obtained a satisfactory level of communicative participation. Thus, while current interventions are beneficial, they may not meet the full range of clients' communication needs. While responding to the CPIB through a proxy rater may be feasible, caution is warranted due to concerns about maintaining the autonomy of PwPD. What is already known on this subject The communication disorders associated with Parkinson's disease (PD) can have a negative impact on quality of life and life participation as measured by patient (or person)-reported outcome measures (PROMs). The Communicative Participation Item Bank (CPIB) is one PROM available to use with adults with communication disorders. However, little is known about whether the CPIB captures changes in communicative participation as a result of standard care treatment for people with Parkinson's disease (PwPD). Use of computerised adaptive testing (CAT), proxy report and comparison to targeted participation outcomes have not been explored. What this study adds to existing knowledge As a result of this study, we know that the CPIB captured differences between treatment and observation groups after community-based, standard care speech therapy intervention focusing on motor speech production in PwPD. Static short form and CAT scores did not differ significantly, so the CAT option provides better efficiency requiring, on average, five items to administer compared to the 10-item short form. Proxy and PwPD scores did not differ as a group, but wide variability was noted. What are the potential or actual clinical implications of this work? The CPIB may be a clinically sensitive instrument for capturing changes in communicative participation after treatment. No participants met their ideal CPIB target, and few reached their satisfactory target, suggesting that while current interventions contribute to gains in communicative participation, there are still unmet needs that may call for support and interventions addressing the more complex array of factors affecting communicative participation outcomes for PwPD.

A Comparison of Sound Production Treatment and Metrical Pacing Therapy for Apraxia of Speech: A Single-Case Experimental Design.

The purpose of this investigation was to compare the effects of two specific treatment protocols for acquired apraxia of speech (AOS): Sound Production Treatment (SPT) and Metrical Pacing Therapy (MPT), and to examine changes in communicative participation. Four speakers with chronic AOS and aphasia were each administered SPT and MPT in a replicated crossover design (ABACA/ACABA) with nonconcurrent multiple baselines across participants and behaviors. Treatment outcomes were compared with respect to whole word correctness (WWC) for treated and untreated multisyllabic word targets. Speech intelligibility was assessed using the Chapel Hill Multilingual Intelligibility Test, and communicative participation was measured using the Communicative Participation Item Bank at baseline, washout, and follow-up phases. Three of the four participants experienced statistically significant improvements in WWC with SPT, and three of the four participants with MPT. Based on a priori criteria, three participants demonstrated relatively greater benefit from SPT and one participant demonstrated relatively greater benefit from MPT. There were measurable improvements in intelligibility following SPT for three of the four participants. Only one participant in this investigation reported a significant change in communicative participation, and only following MPT. This study demonstrated that individuals in the chronic stages of AOS can benefit from both SPT and MPT, corroborating prior research on articulatory kinematic and rate and/or rhythm control treatment approaches. It contributes a comparison of two protocols for AOS with respect to whole word targets, intelligibility, and individual self-report of communicative participation changes. More participants showed a relative advantage of SPT over MPT. One individual reported communicative participation improvement after MPT. https://doi.org/10.23641/asha.23971929.

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

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

Modifying the Communicative Participation Item Bank (CPIB) for individuals receiving gender-affirming communication care: Stakeholder feedback from cognitive interviews.

The Communicative Participation Item Bank (CPIB) is a person-reported outcome measure designed for adults with communication disorders. The CPIB has not been validated for use with clients seeking gender-affirming communication care. The purpose of this study was to determine modifications needed to the CPIB for it to be appropriate for transgender respondents. Individual qualitative cognitive interviews were conducted with 14 transgender adults (seven assigned male at birth, six assigned female at birth, one intersex / assigned female at birth). As participants completed the CPIB, they were asked to 'think out loud' to share their reactions to the items, reasons for their item responses, and any recommendations for changing the CPIB. Interviews were recorded, transcribed, and analyzed to identify common and salient trends in participants' feedback. The most salient change participants required was in the CPIB item stem. The original stem ("Does your condition interfere with….") is inappropriate for transgender clients because referring to being transgender as a 'condition' is unacceptable. A new stem ("How difficult is it for you to ….") was acceptable to participants. The original CPIB uses the phrase 'family and friends' to refer to safe and comfortable communication partners. Participants in this study reported that this does not reflect the experiences of many transgender people who are not accepted by their biological families. The recommended alternate wording is "people who know you well." The items reflected situations that were relevant to participants, and wording was acceptable with few exceptions. Participants suggested they would have responded to the CPIB items differently earlier in their transition, with their scores improving over time. The original CPIB questionnaire should not be used with transgender clients due to unacceptable wording. The modified items generated from this study require psychometric calibration for a new CPIB version for clients seeking gender-affirming communication care.

Everyday Barriers in Communicative Participation According to People With Communication Problems.

The purpose of this study was to gain a comprehensive understanding of participation situations that are challenging for people with communication problems, to provide input for the further development of potential items for the Communicative Participation Item Bank (CPIB). A purposive sampling strategy was used to include a diverse group of people with communication problems. Diaries were used as a sensitizing exercise for inductive in-depth interviews. In these interviews, elements of communicative participation situations (concepts) were elicited that participants themselves experienced as difficult because of their communication problem. A thematic content analysis was used to identify overarching themes. In addition, new items were formulated based on the raw codes of the transcripts and linked to the International Classification of Functioning, Disability and Health Activity and Participation domains to examine the distribution of items across the breadth of the construct of communicative participation. Eighteen interviews yielded 44 different concepts. They were clustered in six themes, which capture the person, location, topic, mode, moment, and pace of communication. In total, 103 new items measuring communicative participation were formulated. Most of these items relate to International Classification of Functioning, Disability and Health Activity and Participation domains "interpersonal interactions and relationships," "major life areas," and "community, social, and civic life." This study resulted in an overview of self-reported barriers in daily communicative participation experienced by people with communication problems. These communicative participation situations can be captured within 44 concepts, which are covered by six themes. Future work should investigate if the newly written items can be added to the CPIB. The concepts and the themes can be used in designing and delivering a participation-focused intervention for this population.

Assessing Patients and Care Partner Ratings of Communication-Related Participation Restrictions: Insights From Degenerative Disease.

Prior studies have shown that communication-related participation restrictions in patients with degenerative disease do not always match clinician judgment or objective indices of symptom severity. Although there is a growing body of literature documenting that discrepancies between patients with dementia and their care partners' perception of participation restrictions exist, it is not known how care partner perceptions of communication participation restrictions specifically match or diverge from the patients' experiences, which may inform the use of care partner proxy in the context of degenerative diseases. Thirty-eight patients with progressive neurologic conditions (progressive supranuclear palsy, corticobasal syndrome, and primary progressive aphasia or apraxia of speech) and, in most instances, focal cognitive-communication disorders were included. The patients and their accompanying care partners independently completed the Communicative Participation Item Bank, short form, a 10-question survey about communication participation restrictions in different contexts. Care partners were instructed to complete the form with their perception of the patient's experience. The difference between patient and care partner total scores were calculated and analyzed relative to clinical and demographic variables of interest. Care partner ratings modestly tracked with patient experience and objective indices of symptom severity but did not exactly match patient ratings. The presence of aphasia increased, but did not fully account for, the likelihood of a discrepancy between care partner and patient ratings. Although careful consideration should be given prior to using care-partner report as a proxy for patient experience, it is worthwhile to include care partner ratings as a means of supporting conversations about differing perceptions, guiding joint intervention planning, and monitoring care-partner perceptions of change along with the implementation of supported conversation strategies.

Establishing severity levels for patient-reported measures of functional communication, participation, and perceived cognitive function for adults with acquired cognitive and language disorders

PurposeTo empirically assign severity levels (e.g., mild, moderate) to four relatively new patient-reported outcome measures (PROMs) for adults with acquired cognitive/language disorders. They include the Communicative Participation Item Bank, the Aphasia Communication Outcome Measure, and Neuro-QoL’s item banks of Cognitive Function (v2.0) and Ability to Participate in Social Roles and Activities (v1.0).MethodWe conducted 17 focus groups that comprised 22 adults with an acquired cognitive/language disorder from stroke, Parkinson’s disease, or traumatic brain injury; 30 care partners of an adult with an acquired cognitive/language disorder; and 42 speech-language pathologists who had experience assessing/treating individuals with those and other cognitive/language disorders. In a small, moderated focus-group format, participants completed “PROM-bookmarking” procedures: They discussed hypothetical vignettes based on PROM item responses about people with cognitive/language disorders and had to reach consensus regarding whether their symptoms/function should be categorized as within normal limits or mild, moderate, or severe challenges.ResultsThere was generally good agreement among the stakeholder groups about how to classify vignettes, particularly when they reflected very high or low functioning. People with aphasia described a larger range of functional communication challenges as “mild” compared to other stakeholder types. Based on a consensus across groups, we present severity levels for specific score ranges for each PROM.ConclusionStandardized, stakeholder-informed severity levels that aid interpretation of PROM scores can help clinicians and researchers derive better clinical meaning from those scores, for example, by identifying important clinical windows of opportunity and assessing when symptoms have returned to a “normal” range.

The experiences of speech pathology referral and communicative participation in adults with cerebellar ataxia

Purpose The purpose of this study was to identify potential barriers to speech pathology referral in ataxia, as well as potential factors influencing satisfaction with speech pathology and communicative participation. Method An online survey study included questions about participant demographics, referral and access to speech pathology, satisfaction with speech pathology, and communicative participation via the Communicative Participation Item Bank (CPIB). Results We analysed 118 eligible responses from individuals with ataxia. Results from Bayesian regression models indicated that the overall referral rate to speech pathology was 64% for the respondents with a speech impairment, predicted by lower income, less education, and greater self-perceived speech severity. Additionally, sex, self-perceived speech severity, and length of speech impairment predicted more restricted communicative participation. For the respondents who were referred for speech pathology, overall satisfaction with speech pathology was neutral to high but most individuals reported little to no improvement in their speech. Conclusion Referral rate to speech pathology was low given that dysarthria and dysphagia are highly likely to occur in ataxia. Considerations should be made for perceived speech severity, sex, and length of speech impairment in evaluating communicative participation. Lastly, there is a vital need for evidence-based treatment for ataxic dysarthria.

Synkinesis and Communicative Participation.

Background: Facial palsy (FP) impacts verbal and nonverbal communication, but the effect of synkinesis on communicative ability is unknown. Objective: Among patients with nonflaccid FP, or synkinesis, is there a correlation between disease-specific quality-of-life and communicative ability or dysfunction? Methods: Retrospective study of a series of adult patients with unilateral synkinesis. Subjects were evaluated using the Communicative Participation Item Bank (CPIB) Short Form, Facial Clinimetric Evaluation (FaCE) scale, and Synkinesis Assessment Questionnaire (SAQ). Associations between these scales were evaluated by computing Pearson correlation coefficients. Results: A total of 69 confirmed synkinesis patients were included. Synkinesis patient mean (standard deviation) CPIB score was 20.68 (±8.27; range of scale 0-30), indicative of communication restriction. A strong correlation was observed between total CPIB and FaCE scores (r = 0.66), indicating patients with synkinesis who reported better facial function also reported greater communicative ability. There was a weak correlation between CPIB and SAQ scores (r = -0.27). Conclusion: Synkinesis is associated with significant deficits in communicative ability. Communication restrictions track strongly with the FaCE scale.

Development and validation of the patient-reported “Facial Function Scale” for facioscapulohumeral muscular dystrophy

Purpose Facial weakness and its functional consequences are an often underappreciated clinical feature of facioscapulohumeral muscular dystrophy (FSHD) by healthcare professionals and researchers. This is at least in part due to the fact that there are few adequate clinical outcome measures available. Methods We developed the Facial Function Scale, a Rasch-built questionnaire on the functional disabilities relating to facial weakness in FSHD. A preliminary 33-item questionnaire was created based on semi-structured interviews with 16 FSHD patients and completed by 119 patients. For reliability studies, 73 patients completed it again after a two-week interval. Data were subjected to semi-automated Rasch analysis to select the most appropriate item set to fit model expectations. Results This resulted in a 25-item unidimensional, linear-weighted questionnaire with high internal consistency (person separation index = 0.92) and test–retest reliability (patients’ locations ICC = 0.98 and items’ locations ICC = 0.99). Good external construct validity scores were obtained through correlation with the Communicative Participation Item Bank questionnaire, examiner-reported Facial Weakness Score and facial weakness subscale of the FSHD evaluation score (respectively r = 0.733, r = −0.566, and r = 0.441, all p < 0.001). Conclusions This study provides a linear-weighted, clinimetrically sound, patient-reported outcome measure on the functional disabilities relating to facial weakness in FSHD, to enable further research on this relevant topic. Implications for rehabilitation Facial weakness and its functional consequences are an often underappreciated clinical feature of facioscapulohumeral muscular dystrophy (FSHD), both in symptomatic treatment and in research. To enable the development and testing of therapeutic symptomatic interventions for facial weakness, clinical outcome measures are required. This study provides a linear-weighted, clinimetrically sound, patient-reported outcome measure on the functional disabilities relating to facial weakness in FSHD patients.

Characteristics associated with communicative participation after total laryngectomy

PurposeThe purpose of this study was to identify individual characteristics that are associated with communicative participation after total laryngectomy (TL). MethodsThis study was a single-institution investigation of individuals who had undergone TL. Data were collected at a single timepoint via patient self-report and medical record review. Thirty-five participants completed a questionnaire containing a communication survey as well as several published, validated instruments. Independent variables included characteristics related to demographics, health and medical history, social network composition, and communication. The dependent variable was communicative participation, which was assessed using the Communicative Participation Item Bank (CPIB). Correlations between the independent variables and CPIB scores were calculated to assess the influence of these characteristics on communicative participation. The study participants were subdivided into three distinct groups based on whether their primary method of communication was spoken or non-spoken and the frequency of using alternate methods of communication. Outcomes across the three groups were then compared. A follow-up survey was also conducted to examine the impact of “stay at home” orders during the COVID-19 pandemic of 2020–21. ResultsThere were significant correlations between communicative participation and some non-communication-related characteristics. Reduced communicative participation was associated with younger age, less time since TL, a history of reconstructive surgery, poorer self-rated health, more depressive symptoms, worse quality of life, and a weaker social network of friends. Several communication-related characteristics were also associated with CPIB scores. Increased communicative participation was associated with using fewer non-spoken communication methods, higher levels of satisfaction with speech and communication, and better communicative effectiveness. There were significant differences between the three groups for communicative effectiveness and satisfaction with speech. The three groups did not differ significantly for satisfaction with communication or communicative participation. There were no significant differences in CPIB scores measured before and during the pandemic. ConclusionsCommunicative participation is a complex measure that may be affected by a variety of factors related to demographics, health, social network status, and communication. Despite poorer communicative effectiveness and lower levels of satisfaction, individuals who use non-spoken methods of communication after TL did not demonstrate worse communicative participation than those using spoken methods. Surprisingly, CPIB scores did not decline as a result of social distancing.

Change in communication‐related participation in primary progressive apraxia of speech and aphasia

AbstractBackgroundIndividuals with Primary Progressive Apraxia of Speech (PPAOS) have AOS as the initial and predominant symptom. Many develop aphasia and/or dysarthria later in the disease course. Past research has shown that patients with neurodegenerative AOS experience reduced participation in communication that is further exacerbated by co‐occurring language deficits. Previous studies suggest measures of disease severity do not necessarily correlate with measures of participation restrictions. The aim of this study was to describe changes in communication limitations in these patients over a one‐year interval, measured by 1) the patient via the Communicative Participation Item Bank (CPIB) and 2) the speech‐language pathologist via ASHA's Functional Communication Measures (FCMs) and an adapted Motor Speech Disorder (MSD) severity rating and determine if there are significant changes in these and other objective speech and language measures (e.g. Western Aphasia Battery‐Revised Aphasia Quotient, Apraxia of Speech Rating Scale‐3).MethodSeventeen patients (10 male) with progressive AOS were seen for a second visit approximately one year following the first visit. The measures collected at each visit were statistically compared. Correlations were calculated between the participation ratings and other clinical assessment measures at each visit and qualitatively compared.ResultThere were statistically significant differences in AOS and aphasia severity between visits. There were significant changes in clinical assessments, MSD severity rating, and all ASHA FCMs between visits, but not the CPIB. Comparison of correlations suggest the relationships among clinical and participation measures may change over time.ConclusionThe findings of this study support the use of patient reported outcome measures, like the CPIB, as they may better reflect the patient experience and associated changes in day‐to‐day functioning when other measures may simply index the progression of the disease.

Sensitivity of the Communicative Participation Item Bank for Measuring Patient-Reported Outcomes After Treatment of Unilateral Vocal Fold Immobility

The Communicative Participation Item Bank (CPIB) is a patient-reported outcome measure assessing the association between communication disorders and participation in daily communication. To our knowledge, no prior research has examined whether CPIB scores change after treatment of unilateral vocal fold immobility (UVFI). To compare CPIB scores before and after treatment of UVFI and with patient-defined target treatment outcomes and other common clinical outcomes after UVFI intervention. This single-group case series recruited a convenience sample of community-dwelling patients aged 18 years or older from an urban academic medical center who had a diagnosis of UVFI and planned to receive intervention for UVFI. The study was conducted from March 2014 to March 2019. Intervention for UVFI according to clinicians' recommendations. The treatment type was not controlled for this study. Patients' self-reported communicative participation was assessed by obtaining CPIB scores before and after treatment of UVFI, with scores calibrated to the standardized T scale. Pearson correlations between the CPIB general short form and computerized adaptive format, the Voice Handicap Index-10 (VHI-10), and self-rated and clinician-rated voice severity were also evaluated. The sample included 25 participants, of whom 17 (68%) were male, 8 (32%) were female, and the mean (SD) age was 54.9 (17.0) years. Significant changes after treatment were observed in all quantitative outcomes including the primary outcome of the CPIB; the mean T score before treatment was 40.95 (95% CI, 37.49-44.41) and after treatment was 53.23 (95% CI, 48.41-58.04) (mean difference, -13.04 [95% CI, -7.30 to -18.79]; Cohen d, 0.96). The Pearson correlation between the CPIB general short form and computerized adaptive testing scores at pretreatment was r = 0.93 and at posttreatment, r = 0.95. Computerized adaptive testing showed efficiency advantages, with typically 5 to 6 items required for administration compared with 10 items for the short form. The correlation between the CPIB and VHI-10 was moderate before treatment (r = -0.70) and strong after treatment (r = -0.91). Moderate correlations were observed between the CPIB and clinician-rated voice quality before (r = -0.52) and after (r = -0.46) treatment and between CPIB and self-rated voice quality before (r = -0.56) and after (r = -0.62) treatment. The results of this case series suggest that the CPIB is relevant for clinical use to assess changes in communicative participation among patients with UVFI before and after they receive treatment.

Assessing Change in Communication Limitations in Primary Progressive Apraxia of Speech and Aphasia: A 1-Year Follow-Up Study.

Purpose Individuals with primary progressive apraxia of speech have apraxia of speech (AOS) as the initial and predominant symptom. Many develop aphasia and/or dysarthria later in the disease course. It was previously demonstrated that patients with neurodegenerative AOS experience reduced participation in communication that is further exacerbated by co-occurring language deficits (Utianski et al., 2020). Measures of disease severity did not necessarily correlate with measures of participation restrictions. The aim of this follow-up study was to describe changes in communication limitations in these patients, again measured by (a) the patient via the Communicative Participation Item Bank (CPIB) and (b) the speech-language pathologist via the American Speech-Language-Hearing Association's (ASHA's) Functional Communication Measures (FCMs) and an adapted motor speech disorder (MSD) severity rating to determine if there are significant changes in these and other objective speech and language measures at follow-up after 1 year. Method Of the 24 patients reported in the study of Utianski et al. (2020), 17 (10 men, seven women) returned for a second visit approximately 1 year following the first visit. Identical procedures were utilized; the communication measures collected at each visit were statistically compared. Correlations were calculated between the participation ratings and other clinical assessment measures at the second visit and for the change in scores on those measures between the first and second visits. Results There were statistically significant differences in AOS and aphasia severity between visits. There were significant changes in clinical assessments, MSD severity rating, and all ASHA FCMs between visits, but not the CPIB. Correlation analyses suggest the relationships among clinical and participation measures are complex; overall, patients with more severe changes in AOS experienced greater changes in participation restrictions. Conclusions The findings of this study support the use of patient-reported outcome measures as they may better reflect the patient experience, including the influence of factors such as ongoing speech therapy and the emergence of neuropsychiatric features, and associated changes in day-to-day functioning, when other measures may simply index the progression of the disease. Supplemental Material https://doi.org/10.23641/asha.16528512.