The Communicative Participation Item Bank: Evaluating, and Reevaluating, Its Use across Communication Disorders in Adults

Abstract

Patient-reported outcomes (PROs) are essential in patient-centered, evidence-based practice in speech-language pathology. PROs respect individuals who live with communication disorders as key stakeholders providing a critically unique perspective on consequences of communication disorders, and whether interventions bring about meaningful changes. Some PROs focus on specific communication symptoms such as voice or language symptom severity, while others focus on broader constructs such as quality of life. Many PROs target specific diagnostic groups. This article presents the Communicative Participation Item Bank (CPIB), a PRO that measures communicative participation restrictions. The CPIB was based on the concept of participation, or engagement in life situations, as defined in the World Health Organization's International Classification of Functioning, Disability, and Health. It was designed to be relevant for adults across different communication disorders to facilitate clinical and research activities that may involve either comparing or aggregating data across communication disorders. The CPIB follows current PRO development protocols including systematic guidance from stakeholders through cognitive interviews, and the measurement methods of Item Response Theory that allow precise and adaptive assessment. This article reviews use of the CPIB across different diagnostic groups, and identifies needs for future efforts to expand the relevance of the CPIB further.

Keywords

communicative participation - patient-reported outcomes - quality of life

Learning Outcomes: As a result of this activity, the reader will be able to (1) describe the importance of including stakeholder perspectives such as through cognitive interviews in the development of patient-reported outcomes; (2) describe the recommended methods for scoring and interpreting the CPIB regarding use of T-scores; (3) list at least three populations of people with communication disorders for whom the CPIB has been validated; (4) discuss why measurement of communicative participation is important in clinical assessment and outcomes measurement in addition to conducting assessment of communication impairment/activity; and (5) describe the content and format of the CPIB.

Patient-reported outcomes (PROs) are becoming increasingly recognized as an essential component of assessment and outcomes measurement in speech-language pathology (SLP) clinical practice.[1] [2] PROs ensure that the viewpoints of clients are represented in the identification of treatment needs, the selection and prioritization of treatment goals, and the determination of whether meaningful outcomes have been achieved. Person-centered care in SLP—care that is defined by and focused on the needs, values, priorities, and cultures of an individual client—compels us to capture each client's perspective on the communication disorder, and to document that our interventions have led to changes that they define as worthwhile.[3] [4] [5] PROs can bring measurement rigor to the client values and perspectives component of evidence-based practice.[1] A variety of PROs relevant to various communication disorders in adults are available including those pertaining to neurologic communication disorders,[6] [7] [8] voice disorders,[9] [10] [11] and fluency.[12] [13] [14] The purpose of this article is to summarize the Communicative Participation Item Bank (CPIB)[15] as one example of a PRO that was designed to be applicable for adults across a range of communication disorders. An instrument that can be used across diagnoses could facilitate comparisons across different disorder groups,[16] as well as promote aggregating data across multiple groups for purposes such as obtaining larger samples and performing meta-analyses, identifying common participation restrictions for advocacy purposes, and providing a common metric for clinics to report outcomes across their clinical units. This article will focus on the extent to which the CPIB has achieved the objective of being relevant, valid, and reliable across disorders, as well as looking at the next steps that are needed to fully realize that goal.

Setting the Stage for the CPIB

Development of the CPIB began in 2004 at a time when the National Institutes of Health (NIH) made a significant investment in improving the science of PROs through an initiative referred to as the Patient Reported Outcomes Measurement Information System (PROMIS; https://www.healthmeasures.net/explore-measurement-systems/promis).[17] [18] Researchers working under the umbrella of PROMIS harnessed several methods to advance the scientific rigor of PROs including increased reliance on systematic guidance from stakeholders through cognitive interviews,[19] [20] [21] and use of the modern measurement methods of Item Response Theory (IRT).[22] [23] While the CPIB is not part of the PROMIS system, its development was patterned after PROMIS methods. Before exploring the use of the CPIB in different groups of individuals with communication disorders, the following sections will provide an overview of the CPIB including defining the concept of communicative participation, discussing the role of stakeholder input, and introducing basic concepts of IRT most relevant to clinical use of the CPIB and other IRT-based instruments.

What is the Construct of Communicative Participation?

The construct of communicative participation was adapted from the concept of life participation in the World Health Organization's (WHO) International Classification of Functioning, Disability, and Health (ICF).[24] The ICF defines participation as involvement in life situations. Communicative participation refers specifically to the communication aspects of life situations, and encompasses the exchange of information and ideas among people in the settings in which people live, work, socialize, and engage in their communities.[25] To assess and support communicative participation, it is important to think about the full experience of engagement in communication in a situation, and to appreciate how that involvement is shaped by a constellation of influences. As SLPs, we have often focused largely on communication proficiency such as speech intelligibility, accuracy of reading or auditory comprehension, speech fluency, voice quality, and other measures of communication skill or ability.[26] [27] [28] [29] Communicative participation, however, encompasses a more holistic view of the communication experience than accuracy of communication skills alone.[30] Successful or satisfactory communicative participation requires a level of engagement or involvement that meets each individual's needs or goals, and includes connectedness to others, integration into the communication situation, or other comprehensive views of the communication encounter.[31] [32]

This distinction between communicative participation and communication impairment is clarified by examining the role of these constructs in the context of the ICF framework.[24] The ICF, as a biopsychosocial model of health and disability, reflects the many interactions among the physical structure and function of the body (impairment), activity performance (activity limitations), environmental and personal contextual factors, and participation in life situations (participation restrictions). Given the multiple, multidirectional interactions among these elements, communicative participation can be shaped by any combination of the other factors in the ICF framework. While SLPs are highly familiar with the ways in which physiologic damage to or atypical development of the physiologic mechanisms for speech, language, cognition, and hearing can impact an individual's ability to communicate, we also recognize the profound barriers that the social and physical environments around us can create for people with communication disorders. Furthermore, we recognize that each client brings their own individual background and perspectives to the experience of living with a communication disorder, which can certainly influence priorities for treatment goals, intervention methods, and outcomes. Thus, the CPIB was designed to provide an overall patient-reported view of participation in conversational situations, with the intent that other measures of communication impairment and skill performance, environmental factors, and personal factors can then be compared to ascertain how each contributes to CPIB outcomes.

Why is Stakeholder input important in PRO development?

PROs are designed to assess a construct from the viewpoint of the person living with that experience, and as such, the process of developing PROs should include these stakeholders. Just because a PRO asks patients to respond to the questions does not guarantee that those questions ask about experiences or issues that are the most meaningful or relevant to the people living with the diagnosis or situation.[33] PROs developed solely by clinicians or researchers without the input of people who live with the condition risk being irrelevant, or even offensive to clients if they do not address meaningful experiences using language and terminology that is regarded as acceptable by that population.

Stakeholder input in the development of PROs is often sought through cognitive interviews.[19] [21] In cognitive interviews, the candidate items are presented to people who live with the diagnosis (or other relevant experience) who are asked to “think out loud” as they complete the questionnaires. These participants provide detailed feedback regarding how they answer the questions and why, wording that they find confusing or offensive, the relevance of the content in the items, and all other aspects of a questionnaire including the instructions, response options, format, and any other elements. Instrument developers work collaboratively with these participants to revise the questionnaire. This rigorous process helps ensure that the final version of the questionnaire is acceptable, accessible, and meaningful to the stakeholders.

The input of people living with various communication disorders was incorporated into the development of the CPIB. Cognitive interviews were conducted early in the development of the initial item set, and included people with communication disorders associated with laryngeal dystonia (LD; spasmodic dysphonia), Parkinson's disease (PD), laryngectomy, multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), stroke, and stuttering.[31] [34] Cognitive interviews have been repeated for the CPIB as part of calibrating the instrument for new populations that may not be sufficiently represented by the speech, language, or voice disorders included in the original samples. For example, cognitive interviews conducted with people with hearing loss,[35] and with people who are transgender (manuscript in preparation), identified issues that warrant modifications in the CPIB which will be discussed later in this article.

What is item response theory?

After candidate items for a PRO have been vetted through cognitive interviews, the next step in instrument development is psychometric assessment and further modifications of the item set to optimize validity and reliability. There are two main branches of psychometric methods used in instrument development—Classical Test Theory (CTT) and IRT.[36] [37] [38] Both CTT and IRT grapple with the issue that many of the constructs that are assessed in tests and questionnaires such as reading comprehension, quality of life (QOL), or communicative participation are latent traits. Latent traits are constructs that we cannot observe and measure directly such as height or weight. They are more obscure or underlying traits that we can only estimate based on how individuals respond to test or questionnaire items. For example, we infer what an individual's QOL might be from opinions they express on a questionnaire. CTT is likely the set of psychometric methods that most readers are familiar with even if they have not heard that term before. CTT is based on assumptions that any observed score on a questionnaire reflects a combination of the respondent's “true” score—or actual level of the latent trait, as well as some degree of error in measurement that leads to the observed score differing, to some unknown extent, from the true score. If measures of validity and reliability are sufficiently favorable, we assume that the observed score sufficiently represents the true score.

IRT, sometimes referred to as modern measurement theory, provides estimates of the latent trait by using mathematical modeling of the relationships among the latent trait, the parameters of items on the instrument, and how people respond to the items.[18] [36] [39] [40] [41] While a detailed discussion of IRT is beyond the scope of this article, one analysis, that of differential item function (DIF), is particularly relevant to understanding CPIB development. DIF is essentially a measure of bias in an instrument. Absence of DIF suggests an absence of bias, meaning that the measurement properties of the items (item difficulty and/or item discrimination) do not differ across subgroups such as age, sex, or other participant subgroups. Absence of DIF does not mean that these different subgroups experience the same level of the latent trait (e.g., the same extent of communicative participation restrictions); it means that if subgroups are statistically equated for their trait levels, they will have the same predicted responses to the items. Thus, the same items and scoring parameters can be used across subgroups without measurement confounds stemming from the instrument. Examples of DIF analyses for the CPIB will be discussed later in this article demonstrating the extent to which the CPIB can be used with people with different communication disorders. Two other IRT concepts that SLPs should be particularly aware of when using any IRT-based instrument are adaptive assessment and standard scale scoring which will be summarized in the next paragraphs. Readers interested in more detail about applications of IRT to SLP practice are referred elsewhere.[1] [40]

IRT instruments are often referred to as item banks. An IRT item bank is a reservoir of items from which subsets of items can be selected for an assessment purpose. The items in an IRT item bank usually represent different levels of item difficulty, or levels of the trait, and thus some might be better suited for some measurement purposes than others. For example, in a measure of communicative participation, some items might be more sensitive for capturing the higher level of difficulty of participating in more demanding or complex communication situations, while other items might be more sensitive to capturing the lower levels of difficulty of less-demanding interactions. In contrast to CTT-based instruments (many traditional questionnaires in SLP practice), which require that all items in a questionnaire be administered to obtain valid scores (regardless of how sensitive each item is for assessing that particular individual), IRT allows for adaptive assessment in which only the items in the item bank that are most sensitive for estimating a particular individual's trait level need to be administered. In our example of the CPIB and communicative participation, items that represent the less difficult end of the range of the underlying trait depict situations that are typically easier to engage in such as talking with people you know, or greeting familiar people at a social gathering. Items that represent the more difficult end of the trait range depict situations such as getting your turn in a fast-moving conversation, or communicating in large groups. On the CPIB, someone whose underlying “trait” would be best represented by a score in the low-medium range of the scale should not have to answer items on the more difficult end of the scale, such as those about speaking in large groups, because those items will not be sensitive to estimating their trait.

Adaptive assessment is most efficiently conducted via computerized adaptive testing (CAT) in which a computer algorithm selects items to administer to an individual based on how they have responded to earlier items.[39] [42] [43] CAT administrations can obtain scores that are as precise, or more precise than CTT scores using far fewer items—sometimes as few as four or five items.[43] When CAT applications are not available in clinical and research settings, IRT-based instruments may offer static, paper-and-pencil short forms that consist of a small set of items extracted from the full item bank and calibrated with a scoring guide. Multiple different short forms can be developed from one item bank to target different levels of the latent trait or other assessment purposes, and each is calibrated with its own scoring guide. Thus, with IRT item banks, the “full-item set” may never need to be administered. There may only be CAT applications and short forms, which have been demonstrated to represent the measurement qualities available in the full item bank. Adaptive assessment has the potential to help PROs to be more acceptable for respondents by not asking them to respond to items that may be highly irrelevant to them because the situations asked about are much too difficult, or too easy. In addition, the reduction in response burden facilitated by adaptive assessment might significantly improve feasibility and accessibility of PROs.

This discussion of adaptive testing and multiple short forms raises another key issue in using IRT-based instruments: how to calculate and compare scores generated using different item sets. With IRT instruments, raw scores are generally not appropriate for reporting and interpreting scores. Imagine having two short forms generated from the same item bank—one consisting of items asking about easier communication situations (e.g., short form A) and another with items about more difficult situations (e.g., short form B). Let's pretend that we administer one short form (e.g., short form A) to one person, and the other short form (e.g., short form B) to a different person, and they both get a raw score of 20 on their respective short forms. Because the items in these two short forms are different, and represent different underlying levels of the trait, we cannot say that these two people have the same level of the trait even though they have the same raw scores on their short forms. The only way to interpret and compare these scores is to convert them to a standard scale to which all items in the item bank have been calibrated in a way that accounts for the different difficulty levels, item discrimination abilities, and other measurement parameters of the items. Many IRT-based instruments use the T-scale as the standard scale. The mean of the T-scale is 50 and represents the mean of the calibration sample (standard deviation = 10). The T-scores obtained from different CAT administrations or short forms from the same instrument can be directly compared with each other.

The Format of CPIB (Version 1.0)

Currently, the CPIB is a 46-item bank with the option for CAT and one static, 10-item general short form.[15] All items start with the stem, “Does your condition interfere with…” followed by a conversational situation such as “making small talk,” or “getting your turn in a fast-moving conversation.” All of the items address verbal conversational situations. Items related to communication via reading, writing, or other modalities are not included for two reasons. First, for measurement purposes, the focus on one modality of communication helps create a unidimensional instrument in which all items measure the same construct (i.e., interference in communicative participation).[44] This avoids potential measurement confounds from mixing different communication modalities into one instrument. In addition, focusing on conversational situations keeps the CPIB relevant to most communication disorders in adults because while most communication disorders impact conversation in some manner, not all communication disorders impact reading and writing.

The CPIB item stem refers to “condition” as opposed to a more specific term such as “communication disorder.”[31] [34] This choice was made based on guidance from many cognitive interview participants who had either multiple communication disorders (e.g., a speech disorder and hearing impairment) or a communication disorder occurring in the context of a more complex medical condition such as PD or MS. These participants reported that they could not reliably parse out how much of their communicative participation restrictions might be due to one aspect of communication versus another (the speech disorder vs. the hearing impairment). Participants with complex diagnoses also reported that many aspects of their health conditions such as fatigue, tremor, vision loss, or other symptoms contributed to restricted communicative participation. They indicated that it was an artificial and invalid exercise to try to report how much their communicative participation was restricted by a single symptom when their lived experiences were more complex.

Another term in the CPIB stem that warrants mention is the term “interfere.” This also reflects the consistent feedback provided by cognitive interview participants who wanted wording that captured the problems, challenges, and heartache that had been associated with their communication disorders.[31] [34] While most people reported restrictions in communicative participation, these restrictions took different forms. Some people avoided or felt excluded from situations and simply did not participate. Other people still participated, but did so with considerable effort, discomfort, or frustration. The term “interfere” captured, for most participants, the various ways that their participation might be restricted.

Currently, the CPIB can be administered via either a static paper-and-pencil 10-item general short form that represents the range of the item difficulty levels available in the item bank, or via a CAT application ( https://sites.google.com/uw.edu/cpib ).[15] Thus, there is no “full length” form for the full 46-item set. If using the static short form, scoring and interpretation involves a two-step process. First, the user must calculate the raw or summary score using the point values at the top of each response column corresponding to the extent of interference reported for each item (not at all = 3 points; a little = 2, quite a bit = 1; very much = 0; this system allows for higher scores to indicate more favorable participation). Then, the user should refer to the scoring table on the second page of the short form to convert the raw scores into T-scores. A T-score of 50 on the CPIB is the mean of the calibration sample which was a large sample representing different communication disorders including those associated with both neurologic etiologies and head and neck cancer (HNCA).[15] Thus, a T-score of 50 means that the respondent is reporting about the same level of restrictions in communicative participation as people with other communication disorders report on average. Higher scores are more favorable (i.e., they represent better communicative participation, or less interference). Perhaps a more meaningful way to interpret the scores, particularly in a clinical situation, is to compare a client's score to the maximum possible score which is what a client would achieve if they reported no interference on every item they were administered—an ideal treatment outcome. On the general short form, the maximal possible score is T = 71.0, and on the CAT application the maximal possible score is T = 74.3. Data regarding what constitutes clinically meaningful differences are forthcoming, but one general guide that has been found to be consistent among PRO assessments in other healthcare fields is that a change of half a standard deviation (5 points on the T-scale) is a common indicator of clinically significant change.[45]

Using the CPIB with various populations

The following sections describe the different populations for which the CPIB has been calibrated, and how the CPIB has been used in research or clinical practice with these groups.

Neurologic Speech and Language Disorders

Currently, the CPIB has been calibrated and used with adults representing a range of neurologic motor speech and language impairments. Further work remains to be done, particularly in the areas of cognitive-communication disorders and for more severe impairments requiring use of augmentative and alternative communication (AAC).

Parkinson's Disease

People with PD were included in the cognitive interviews and the initial across-disorder calibration of the CPIB.[15] [31] For people with PD, the CPIB has been moderately correlated with measures of health-related QOL (both general and PD-specific questionnaires), suggesting that it captures a construct that has some overlap with, but is distinct from QOL.[46] An analysis of predictors of CPIB scores in people with PD in both the United States and New Zealand found that better communicative participation was associated with less severe self-reported symptoms in several areas including speech symptoms, cognitive difficulties, emotional symptoms, fatigue, and dysphagia. More favorable participation was also associated with higher levels of speech usage, but with an interaction with age.[46] Relationships between CPIB scores and clinician-administered measures of PD severity may be more nuanced. For example, Spencer et al[47] found that clinician-administered measures of motor severity and a cognitive screening did not significantly predict CPIB scores,[47] while Barnish et al[48] did find that scores on a cognitive screening did predict CPIB scores.[48] Both of these studies demonstrated that the ability of speech intelligibility measures to predict CPIB scores depended on the task. Intelligibility measures based on isolated read sentence production did not significantly predict CPIB scores, whereas intelligibility measures based on more naturalistic, contextually produced sentences or monologue samples did.[47] [48] These findings suggest that communication proficiency measures that replicate naturalistic communication may be stronger predictors of communicative participation.

As an outcome measure, the CPIB captured statistically significant changes in communicative participation after Lee Silverman Voice Training (LSVT) for people with PD with large effect sizes.[49] However, after LSVT, participants still reported scores approximately 1.5 standard deviations below the maximum possible score, suggesting that while improved, they experienced ongoing participation restrictions. These findings support qualitative and quantitative reports from people with PD regarding the complexity of communication experiences, the success of which hinges on more than the extent or nature of dysarthria symptoms.[32] [50] [51] [52] SLPs may need to take a broader approach to helping people with PD with their communicative participation in ways that include, but also extend beyond some of the current impairment-focused speech training programs.

Multiple Sclerosis

People with MS were also included in the initial CPIB cognitive interviews and across-disorder calibration.[15] [31] Similar to findings in people with PD, more favorable participation has been associated with multiple self-reported factors including less severe speech symptoms, fatigue, cognitive symptoms, limitations in physical abilities, and depression. Better participation has also been associated with being employed, as well as with higher levels of perceived social support, education, and speech usage.[53] [54] [55] The CPIB demonstrated moderate-high correlations with a PRO specifically developed to address communication symptoms in people with MS.[56] There is evidence of a significant trend in worsening CPIB scores, as clinician-judged cognitive-communication profiles became more complex in that people without cognitive or dysarthria symptoms reported most favorable communicative participation, followed by people with either cognitive or dysarthria symptoms alone, and then people with combined cognitive and dysarthria symptoms who reported the most restricted participation.[57] In contrast, CPIB scores have not been significantly associated with clinical measures of sentence intelligibility or other clinician-judged speech severity measures.[57] As with PD, these findings suggest that increasing complexity and/or severity of communication symptoms likely contribute to participation restrictions. However, the results also suggest that many of our clinical measures that assess isolated communication skills and tasks may not sufficiently capture those relationships.[57] These findings also support qualitative data that people with MS may be struggling with communicative participation long before any speech symptoms are noticeable to the casual observer.[31] [58] [59] Symptoms such as mild cognitive or word-finding challenges, as well as fatigue and unpredictability of symptoms, may lead people with MS to withdraw from or avoid interactions with other people even though they may be able to mask their communication struggles sufficiently that other people do not notice the symptoms. People with MS may benefit from SLP services to help them maintain, or bolster, their communicative participation much earlier in the course of their disease than they may currently be referred for frank evidence of overt dysarthria or cognitive impairments.

Aphasia (with/without Apraxia of Speech)

After the initial CPIB calibration, a later study demonstrated no clinically significant DIF on the CPIB between people with aphasia and the original calibration sample. This means that the original item set, General Short Form, CAT, and scoring parameters can be used with people with aphasia.[60] Comparison of levels of support needed from SLPs to complete the CPIB to scores from the Western Aphasia Battery-Revised (WAB-R)[61] suggested that people with WAB-R aphasia quotient scores above 80 required minimal assistance. Participants with aphasia quotient scores ranging from 50 to 80 were generally able to complete the CPIB, although with increasing reliance on support as aphasia severity worsened. Participants with WAB-R scores lower than 50 were generally unable to complete the CPIB or did so with considerable difficulty.[60] The CPIB was moderately correlated with the ASHA Quality of Communication Life (ASHA-QOL) scale, again showing that the CPIB represents a related but not identical construct to QOL.[60] Correlation between self-report and family proxy report on the CPIB was low with proxy scores being over 5 points lower on the T-scale (over half a standard deviation) than the self-report scores, a difference that was statistically significant.[60]

In a study with people with primary progressive apraxia of speech (AOS) with and without co-occurring aphasia, CPIB scores revealed restricted communicative participation in all subgroups, but more so in people with aphasia co-occurring with AOS than with AOS alone (or AOS with dysarthria).[62] Findings supported other trends in the research that CPIB scores do not always correlate strongly with measures of speech or language abilities.[62] Early studies on changes in CPIB scores after treatment have been mixed with one study showing significant gains after treatment for aphasia,[63] but another showing mixed results after treatment for AOS.[64]

IRT instruments with adaptive testing such as CAT may be of particular benefit for people with aphasia or other cognitive or language impairments, for whom the demands of reading and responding to questions may be particularly fatiguing. CAT applications that can get highly precise and reliable measurement with just a small number of items may facilitate greater involvement of clients and research participants in PRO measurement. This approach may reduce the historical problem of people with cognitive or linguistic impairments being excluded from research because of difficulties with self-report.[65] [66] [67] We should also keep in mind that completing PROs is not an assessment of reading comprehension. Clients can be assisted in completing PROs, including having items read to them, as long as they understand the intent of the items and can provide their own responses in some reliable manner.[68]

Degenerative Diseases

People with ALS were included in the cognitive interviews and initial calibration of the CPIB.[15] [31] Another study with people with ALS showed a wide range of CPIB scores, with communicative participation steadily worsening with increasing dysarthria severity.[69] CPIB scores correlated strongly with other bulbar symptoms but only moderately with speech intelligibility scores.[69] The CPIB has also undergone assessment for use with people with Huntington's disease,[70] and has been used with individuals with progressive ataxic dysarthria.[71]

One notable limitation of the early work with people with ALS is that all participants were still using natural speech for at least some of their communication.[15] [69] The CPIB has yet to be calibrated for people who communicate primarily or solely with AAC. Validating the CPIB for AAC communicators needs to begin with cognitive interviews to assess the acceptability of many of the items which refer to “speaking.” This qualitative work should be followed by the psychometric analyses needed to either demonstrate no DIF with prior calibration samples, thus allowing use of the current item set and scoring parameters, or advising on the modification of the CPIB for AAC communicators.

Head and Neck Cancer

People with HNCA, including people with laryngectomy, were included in the cognitive interviews and initial CPIB calibration.[15] [31] Many of the trends with HNCA are similar to those with other disorder groups. For example, correlations between the CPIB and both general health-related and diagnosis-specific QOL instruments in HNCA vary from low to moderately high.[72] [73] Those relationships strengthen to moderate-strong correlations with instruments that focus on voice-specific QOL such as the Voice Handicap Index (VHI), particularly in studies that have included a large representation of individuals treated for laryngeal cancer.[72] [74]

As with other diagnoses, clinical measures of speech severity and speech intelligibility are only weakly associated with communicative participation in HNCA.[75] [76] However, also consistent with other populations, the severity of self-reported speech symptoms is the variable most strongly associated with CPIB scores in HNCA (i.e., increased self-rated severity of speech is associated with worse communicative participation). Other self-reported variables including cognitive symptoms, depression, perceived social support, and resilience are also significantly associated with communicative participation.[73] [77] [78] These findings support the premise that communicative participation is affected by multiple non–speech impairments as well as environmental and personal factors in HNCA survivors, as well as in other populations.

One finding specifically relevant to people with HNCA is that CPIB scores may vary with different cancer sites. For example, scores have been shown to be worse for people with oral cancer compared with those with oropharyngeal cancer.[73] [78] When combined with other studies, it appears that regardless of cancer site, many patients with different types of HNCA may be at high risk for not returning to their baseline function in communicative participation, even many years after their HNCA treatment. Future studies using longitudinal designs are forthcoming.

Voice Disorders

People with LD (also known as spasmodic dysphonia) have been represented at many stages in the development of the CPIB, including the earliest cognitive interviews,[34] the first preliminary psychometric IRT analyses,[79] and a later additional item calibration finding no DIF with other populations included in CPIB development.[80] Correlations between the CPIB and VHI for people with LD have been shown to be moderate-high.[79] [80]

A comparison of CPIB scores with qualitative patient accounts revealed that even for people who have been established in treatment with botulinum toxin (BoNT) injections, the most common treatment for LD, there is a wide range of persistent communicative participation restrictions. Some people receiving long-term BoNT injections experience negligible restrictions in communicative participation, while others still experience severe restrictions. Mixed results have been found regarding changes in CPIB scores after BoNT treatment, with both statistically significant[80] and nonsignificant[81] findings reported. Two factors in the latter study may have contributed to lack of statistical significance.[81] First, most participants appeared to be experienced with BoNT injections, and it is possible that people who know from experience how to manage the ups and downs of the BoNT treatment cycle may not experience wide swings in PRO perspectives in any single treatment cycle. Second, the post-injection data collection point appeared to be within 2 weeks after the injection, and some participants may have not yet reached their optional voice quality at that time. These studies illustrate the need to consider issues unique to cyclical treatment such as BoNT when assessing communicative participation or other patient-reported constructs in people with LD.

One of the issues that has become apparent in exploring communicative participation in people with LD, similar to PD and other populations described earlier, is that there is often a gap left between the communicative participation gains that are made with traditional interventions and optimal communicative participation.[34] In LD, residual dysphonia, speaking effort, fluctuations in symptoms over the treatment cycle, unpredictability of treatment response, and unaccommodating communication environments are just some factors that continue to exert restrictions on communicative participation, even when people have been receiving BoNT treatment for years.[82] SLPs should play a critical role in helping people with LD maximize their communicative participation even when they are established in BoNT treatment.

Use of the CPIB with other voice populations is gradually growing. Significant improvements in CPIB scores have been observed after intervention for unilateral vocal fold immobility. The CPIB has also been shown to be sensitive to change in people with presbyphonia undergoing SLP intervention.[83] A cross-sectional study of a community-based sample representing diverse voice disorder diagnoses supported trends found in other populations that the CPIB demonstrates moderate correlations with other PROs, such as the VHI, indicating that the CPIB addresses a construct related to, but sufficiently distinct from other PROs to warrant its use in clinical assessment and outcomes measurement.[84]

Fluency

People who stutter were included in the qualitative cognitive interviews as part of developing the CPIB.[31] In terms of quantitative explorations of communicative participation restrictions and contributing factors, the patterns seen in the populations described thus far appear to continue with people who stutter. Strong correlations have been observed between the CPIB and self-reported speech severity. Moderate correlations were observed with self-esteem, self-efficacy, and social support; and significant but small correlations were observed with age, education, speech usage, and stuttering self-help/support group history.[85]

Additional Populations

Use of the CPIB has begun to spread to additional populations which may provide insight into the impact of a wide range of health conditions on communicative participation, even if speech, language, cognitive, or hearing impairments may not be the most salient aspects of those diagnoses. Restrictions in communicative participation were captured by the CPIB for people with spinal cord injury (SCI),[86] facioscapulohumeral muscular dystrophy (FSHD),[87] and facial paralysis.[88] [89] These studies revealed a range of communicative participation restrictions with, in some cases, the extent of the restrictions being commensurate with those resulting from more traditionally identified speech or language impairments. One finding of interest is that across these groups, conversational situations that require some element of speed or endurance such as having long conversations, getting your turn in fast-moving conversations, and having to say something quickly are situations that these participants found particularly challenging.[86] [87]

Cross-Cultural Investigations and Translations

Two studies have investigated the psychometric properties of the CPIB in other English-speaking countries including New Zealand[90] and the United Kingdom[48] with favorable results. At the time of this writing, the CPIB is being used in Swedish.[69] Efforts are underway for translations of the CPIB into other languages as well, with results pending.

Future Directions

The evidence summarized in this article suggests that the CPIB captures the construct of communicative participation in a manner that is meaningful, relevant, valid, and reliable for people across a range of communication disorders and other health conditions. Combined, the evidence to date suggests that the CPIB measures a construct that is not uniquely captured by other PROs that focus either more specifically on speech or language symptoms, or more broadly on overall QOL. Furthermore, CPIB scores are not fully accounted for by clinical measures of speech or language skill or ability. Despite these positive indicators that the CPIB provides a useful tool in the measurement toolbox, the relevance and acceptability of the original CPIB version are not universal. Recent and ongoing research has suggested needed modification of the CPIB for some populations.

One population for whom the CPIB may warrant modification is people with hearing loss. Cognitive interviews suggested that 12 of the 46 CPIB items were not optimally relevant and acceptable to people with hearing loss.[35] The primary reason that these items were unacceptable is that they were written in a way that focused almost entirely on expressive communication (e.g., giving someone detailed information) instead of on the back-and-forth exchange of communication. Items that referred more holistically to conversations that encompassed both receptive and expressive communication were regarded as highly relevant. Given these findings, one option is to create another short form for the CPIB focused on items with the highest relevance to that population for a hearing-loss–specific short form.

One group for whom the original CPIB version is unacceptable is people who are transgender. Based on cognitive interview findings, to be reported in a later article, SLPs and healthcare providers are strongly advised to not use the original CPIB with this population because wording of the item stem is not acceptable to many people who are transgender. At the time of this writing, work is underway calibrating a new version of the CPIB that uses more inclusive wording, and readers are encouraged to contact the corresponding author for more details if further information is desired before results are published. The new CPIB version that is undergoing psychometric analyses may also be more inclusive for other populations who would not be considered as having communication disorders such as people seeking accent modification, or even for typically communicating adults who may experience other factors influencing communicative participation. The addition of a CPIB “version 2.0” will not render the original version invalid. Clinicians and researchers who find the original version suitable for their needs and want a version with established validity and reliability data behind the CPIB for the populations for which these data exist may choose to continue to use the original version.

Other areas need to be addressed to achieve truly widespread applicability of the CPIB. As mentioned earlier, studies of validity and reliability have not been conducted for some groups including those with cognitive-communication disorders resulting from various etiologies, and people who communicate primarily or solely using AAC. Finally, further exploration into translations and applicability in different languages and cultures is needed.

In conclusion, in this article we have attempted to summarize the development of the CPIB and its use in clinical and research applications up to the time of writing this article. While we have attempted to be as inclusive as possible in capturing the existing peer-reviewed literature relevant to the CPIB, we acknowledge the possibility that some articles may be missed in this review, particularly if they reach publication status between completion of writing and publication of this article. We hope that researchers and clinicians will find the CPIB useful in promoting holistic, patient-centered communication care, and we appreciate the efforts of clinicians and researchers, as well as those of people with communication disorders and their families and colleagues, to promote communication access and equity for all.

Conflict of Interest

C.B. reports grants from National Institute on Deafness and Other Communication Disorders, National Center for Medical and Rehabilitation Research, National Cancer Institute, National Spasmodic Dysphonia Association, Cure Dystonia Now, University of Washington Royalty Research Fund, and American Speech-Language-Hearing Foundation, during the conduct of the study.

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Publication History

Article published online:
14 July 2021