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Orthoses are often prescribed to improve mobility of people with chronic health conditions that affect lower limb function. Patient-reported survey instruments can be used to measure aspects of mobility that cannot be easily assessed in clinical or research settings. A population-specific item bank could be designed to measure aspects of mobility that are most important to lower limb orthosis users and evaluate the effects of orthoses.The aim of this research was to develop items for a new survey instrument to measure mobility of lower limb orthosis users.A qualitative item review process included focus groups with lower limb orthosis users, an item generation and reduction process that involved a stakeholder advisory panel, and cognitive interviews with target respondents.Focus groups were held by video conferencing. Cognitive interviews were conducted by telephone.Focus group and cognitive interview participants were adults with at least six months of experience using a lower limb orthosis that extended from the foot to a level above the ankle.A total of 1,326 extant items were identified in a literature review. Focus group participants (n=29) provided feedback that informed the suitability of a construct definition and conceptual model. An advisory panel contributed to the selection of 118 candidate items for measuring orthotic mobility. Feedback from cognitive interview participants (n = 30) informed removal or revision of problematic items, resulting in a candidate bank of 100 mobility items.The rigorous qualitative methods applied here resulted in a large set of candidate items that spanned a range of situations relevant to moving with a lower limb orthosis. Next steps include administration of the candidate items to a large sample of lower limb orthosis users and calibration of the item bank. This article is protected by copyright. All rights reserved.

People with communication disorders face barriers to accessing safe and respectful healthcare. These barriers result in increased healthcare complications and inefficiencies, both of which contribute to increased healthcare costs. One obstacle to advocating for accommodations that could improve healthcare for this population is the absence of cost effectiveness studies of such accommodations specifically, as well as a paucity of data defining the needs of this population in general. The purpose of this study was to explore how people with communication and swallowing difficulties are characterized in the National Health and Aging Trends Study (NHATS), a nationally representative survey of Medicare beneficiaries aged 65 and older, and how they manage their healthcare. Cross-sectional data from the NHATS rounds 5 to 9 (2015–2019) resulted in 8,038 unique respondents, 3,243 of who reported speech, memory, hearing, and/or swallowing difficulties. More than 90% of respondents with communication difficulties reported having a regular doctor. Less than 60% of respondents with communication difficulties had a family member or caregiver go to medical appointments with them, and around 70% of that subset of participants received help from that caregiver with communication during appointments. Fewer than 15% of respondents with communication difficulties used the internet for healthcare communication or information. Less than 5% of respondents across all communication difficulty categories had received rehabilitation services for communication in the year prior to their survey responses. While the information gleaned from NHATS points to likely gaps between the needs people with communication disorders may have for safe and accessible healthcare, and the support available, future research is needed to improve and clarify how communication disorders are defined and characterized in large-scale surveys to generate more interpretable data. These stronger empirical foundations are needed to support cost-effectiveness analyses to advocate for better communication accessibility of healthcare settings.

BACKGROUND Laryngeal dystonia (LD), or spasmodic dysphonia (SD), is a neurological disorder characterized by focal dystonia or involuntary spasms of the laryngeal muscles and associated voice symptoms. It is typically treated with injection of botulinum toxin (BoNT) that weakens the affected muscles. AIMS The primary purpose of this qualitative study was to explore participants' experience of living with LD and BoNT treatment. The secondary purpose was to examine those experiences as a function of participants' scores on the Communicative Participation Item Bank (CPIB). Results will enhance our understanding of restrictions in communicative participation, assist in planning intervention targeting these restrictions and aid in clinical interpretation of CPIB scores. METHODS & PROCEDURES Semi-structured interviews using a phenomenological tradition and focusing on BoNT treatment and communicative participation were conducted with 26 people with LD who are on established BoNT treatment regimens. Interviews were recorded, transcribed, coded and analysed inductively. Participants were categorized by CPIB scores into groups ranging from none to extensive participation restrictions. Both self- and expert ratings of voice were obtained. OUTCOMES & RESULTS Participants with different levels of CPIB scores had different experiences related to communicative participation in the context of BoNT treatment. These differences were organized into the following topics: BoNT and voice; attitudes toward participation; coping strategies; and advice. For all participants except those in the least restricted and most restricted groups, expert ratings of voice did not relate to CPIB scores. CONCLUSIONS & IMPLICATIONS Although most participants report improved voice with BoNT treatment, many participants experienced lingering restrictions in communicative participation, some to a severe extent. Participants reported coping with these restrictions in many ways; some of these strategies were more successful than others. Those with restricted participation recommended more support for daily life and the emotional toll of LD, as well as support for family members. This support might be offered by speech-language pathologists. WHAT THIS PAPER ADDS What is already known on the subject Participants with different levels of CPIB scores had different experiences related to communicative participation in the context of BoNT treatment. What this study adds to the existing knowledge Although most participants report improved voice with BoNT treatment, many participants experienced lingering restrictions in communicative participation, some to a severe extent. What are the potential or actual clinical implications of this work? SLP services that take a participation-focused approach to intervention and use multi-factorial approaches to help clients maximize their life participation in the context of LD are well within the SLP scope of practice. SLPs can help clients find and use their optimal voices within the constraints of the dystonia and BoNT effects.

Purpose The purpose of this study was to explore the extent to which communicative participation differs across diagnoses and if there are common predictor variables for communicative participation across diagnoses. Method Survey data on self-report variables including communicative participation were collected from 141 community-dwelling adults with communication disorders due to Parkinson's disease, cerebrovascular accident, spasmodic dysphonia, or vocal fold immobility (VFI). Analysis of covariance was used to determine communicative participation differences between diagnoses, with age, sex, and hearing status as covariates. Sequential entry linear regression was used to examine associations between communicative participation and variables representing a range of psychosocial constructs across diagnoses. Results The VFI group had the least favorable communicative participation differing significantly from Parkinson's disease and spasmodic dysphonia groups. Self-rated speech/voice severity, self-rated effort, mental health, perceived social support, and resilience contributed to variance in communicative participation when pooled across diagnoses. The relationship between communicative participation and the variables of effort and resilience differed significantly when diagnosis was considered. Conclusions The findings suggest that communicative participation restrictions may vary across some diagnoses but not others. People with VFI appear to differ from other diagnosis groups in the extent of participation restrictions. Effort and resilience may play different roles in contributing to communicative participation in different disorders, but constructs such as social support, severity, and mental health appear to have consistent relationships with communicative participation across diagnoses. The findings can help clinicians identify psychosocial factors beyond the impairment that impact clients' communication in daily situations.

OBJECTIVE: To determine how communicative participation is affected in patients with oral and oropharyngeal head and neck cancers (HNC) pre-treatment, and whether communication function predicts HNC-specific quality of life (QOL) before treatment, beyond known demographic, medical, psychosocial, and swallowing predictors. STUDY DESIGN: Cross-sectional study. SETTING: Tertiary care academic medical center. SUBJECTS AND METHODS: Eighty-seven patients with primary oral (40.2%) or oropharyngeal (59.8%) HNC were recruited prior to treatment. T stage, tumor site, and p16 status were extracted from medical records. Demographic and patient-reported measures were obtained. Communicative participation was measured using the Communicative Participation Item Bank (CPIB) General short form. A hierarchical regression analysis included demographic, medical, psychosocial, and functional measures of swallowing and communication as predictors; the University of Washington Quality of Life (UW-QOL v4) composite score was the predicted variable. RESULTS: Median baseline CPIB scores were 71.0 (SD = 11.83); patients with oral cancers reported worse scores. A final sequential hierarchical regression model that included all variables explained 71% of variance in QOL scores. Tumor site, T stage, and p16 status accounted for 28% of variance (P < 0.001). Perceived depression predicted an additional 28% of the variance (P < 0.001). Swallowing and communicative participation together predicted an additional 12% of variance (P = 0.005). Tumor site, perceived depression, swallowing, and communication measures were unique predictors in the final model. Finally, communicative participation uniquely predicted QOL, above and beyond other predictors. CONCLUSION: Pre-treatment communication predicted QOL, and was negatively impacted in some oral and oropharyngeal HNC patients.

Caregiver-reported assessments provide opportunities for caregivers to share concerns and identify the strengths of their infant/toddler regarding prenatal alcohol exposure (PAE). These insights may reveal under-recognized concerns and inform a strengths-based approach to early intervention. The purpose of this study was to describe the type and frequency of caregiver-reported concerns and strengths in a sample of infants/toddlers at the time of their fetal alcohol spectrum disorder (FASD) diagnostic evaluation. Caregivers’ concerns and strengths were identified in the context of two parent-report questionnaires, the Infant Toddler Sensory Profile and Child Behavior Checklist/1½-5. By using content analysis, caregivers’ open-ended responses were identified, coded, and analyzed. The frequencies of all the coded concerns and strengths were counted. The data were compared across the two age groups (

Purpose To examine the experiences of people with ALS (pALS) and their communication partners (cALS) regarding receiving speech-generating device (SGD) evaluation and treatment via telepractice. Method Eight pALS along with a primary cALS participated in telepractice SGD evaluation and treatment with an augmentative and alternative communication (AAC) specialist and representatives from multiple SGD vendors. Participants were interviewed postevaluation and post-SGD training to examine their experiences. Mixed methods data were collected through Likert scale responses and qualitative interviews. Results Telepractice SGD evaluation and training were feasible and resulted in all pALS receiving SGDs they were able to use to communicate. In both Likert rating items and qualitative interviews, participants rated the telepractice experience very highly in terms of giving them access to AAC services via an AAC specialist that they would not have otherwise been able to access, and doing so in a format that was possible given their limitations in mobility, endurance, and caregiver availability. Suggestions for improving the telepractice experience were provided. Conclusions Telepractice should be considered as an option to provide vital SGD services to patients who are geographically remote, mobility impaired, unable to leave their home, experience fatigue with travel, or otherwise would not have access to these specialized services. Telepractice allows patients to preserve their time and energy for the assessment and treatment sessions, resulting in perhaps deeper and more frequent engagement in evaluation and training. Telepractice could serve as an alternative to outpatient, in-person evaluations, or be utilized in conjunction with in-person appointments. Supplemental Material https://doi.org/10.23641/asha.15094257

Purpose Patients with communication impairments including speech, language, cognition, or hearing disorders face many barriers to communication in health care settings. These patients report loss of autonomy in health care decision making, are at increased risk for medical errors, and are less satisfied with health care than patients without communication disorders. Although medical students receive training in effective patient–provider communication, most of this training assumes patients have intact communication abilities. Medical students and other health care providers are often unprepared to meet the communication needs of patients with communication disorders in health care encounters. The purpose of this study was to assess the impact of a curriculum for training medical students to communicate effectively with patients who have a range of communication disorders. Method Twenty-six 2nd-year medical students volunteered for assessments before and after a required workshop in a class. This workshop included instruction about different types of communication disorders and communication strategies, followed by practice with standardized patients portraying different communication disorders. Outcome measures included a knowledge test, ratings of self-efficacy, and evaluation of students' skills when interviewing standardized patients portraying aphasia and dysarthria. Results Medical students demonstrated significant improvements in knowledge, self-efficacy, and use of recommended communication techniques. Conclusions The curriculum appeared effective in changing medical students' knowledge and skills for working with patients with communication disorders. Equipping medical students to meet the needs of patients with communication disorders is 1 key element for improving the quality of health care for this patient population.

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.

Purpose The purpose of this study was to explore the psychosocial impact of botulinum toxin (BoNT) injections for oromandibular dystonia (OMD) and to gain a better understanding of how participants judge the success of this treatment. Method Eight individuals with OMD and dysarthria participated in one face-to-face, semistructured interview. Interviews were audio-recorded and transcribed verbatim. Qualitative, phenomenological methods of coding, immersion, and emergence were used in the analysis of interview data. Results Two major themes and six subthemes emerged from the analysis of interview data. The first theme, Botox has changed me and my experiences , explored the participants' perspective of receiving BoNT injections and its psychosocial impact. The second theme, What communication is like for me , explored the psychosocial impact of BoNT on speech production and participation. Conclusions Our results suggest that BoNT has a variable impact on domains related to quality of life, satisfaction with treatment, speech production, and communicative participation. This study adds novel information related to the psychosocial consequences of BoNT treatment in the management of OMD and builds on a literature that studies the consequences and experiences of living with OMD.

Purpose Family members of people with Parkinson's disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs ( N = 110) on their clinical practices involving family members. Results Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members' availability. Conclusions While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families' perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.

Importance 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). Objective 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. Design, setting, and participants 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. Exposures Intervention for UVFI according to clinicians' recommendations. The treatment type was not controlled for this study. Main outcomes and measures 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. Results 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. Conclusions and relevance 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.

Purpose: Survivors of head and neck cancer have reported difficulties with memory, attention, verbal fluency, and processing speed sometimes persisting years after treatment. Self-perceived cognitive function is an important predictor of communication outcomes in this population. This study explores the lived experience of cognitive changes in survivors of non-nasopharyngeal head and neck cancer and how these changes affect communication in their daily lives.Materials and methods: In the phenomenological tradition, five adult survivors of non-nasopharyngeal head and neck cancer participated in individual semi-structured interviews. The interviews were audio-recorded, transcribed, coded, and summarized into themes.Results: Two major themes emerged: (1) I would have told you about being forgetful, but I forgot; and (2) It's such a journey that much of it is uncharted. Participants described problems with memory, focus/attention, and task initiation along with slowed processing and language difficulties. These difficulties affected communication at work, socially, and at home. Participants expressed feeling unprepared for the possibility of cognitive changes, not knowing why they were happening or what to do about them.Conclusions: Results of this study have implications for counseling and treatment of individuals with head and neck cancer, as well as advocating for these patients to receive appropriate information and intervention.Implications for rehabilitationSurvivors of non-nasopharyngeal head and neck cancer described experiencing problems with memory and focus/attention along with slowed processing and language difficulties.Study participants generally felt both unprepared for the cognitive changes they experienced and, in many ways, unsupported by healthcare providers and others.Rehabilitation professionals should be aware that cognitive changes following medical treatment for head and neck cancer may affect a patient's ability to learn and follow complex treatment regimens.Rehabilitation professionals can advise and advocate for these patients to receive the appropriate referrals for assessment and treatment of their cognitive symptoms.

Patient-provider communication skills training programs rarely include content addressing how health care providers can improve communication with patients exhibiting dysarthria and other communication disorders. Consequently, these patients often struggle to access quality health care services. This article describes a training program focused on giving health care students the opportunity to interact with standardized patients portraying dysarthria and aphasia. A summary of the program's outcome is then provided from the perspective of the students involved as well as lessons students taught us about how to continue improving this type of program and to make it a more universal part of health care education.

Purpose The purpose of this study was to evaluate the believability of standardized patients portraying individuals with communication disorders as part of a larger study in which standardized patients help train medical and allied health students about communication disorders. Method Two women portrayed persons with aphasia, and 2 men depicted persons with dysarthria associated with Parkinson's disease. Two stakeholder groups rated believability. Speech-language pathologists rated believability of videos online. Persons with aphasia rated aphasia videos during in-person sessions with the researchers. Results Targeted believability was 80 or higher (0–100 scale; 0 = not at all believable , 100 = very believable ). For speech-language pathologist raters, average ratings met the target for the portrayals of the aphasia characteristics of word-finding problems, agrammaticism, nonverbal communication, and overall portrayal but not for auditory comprehension problems. Targets for the portrayals were met for the dysarthria characteristics of reduced speech movements, reduced loudness, reduced intonation, flat affect, and overall portrayal but not for speech rate. Ratings for different standardized patients portraying the same case were not significantly different from each other on most characteristics. Ratings from persons with aphasia were highly variable. Conclusion Standardized patients who do not have communication disorders can portray disorder characteristics in a believable manner.

The term 'speech usage' refers to what people want or need to do with their speech to fulfil the communication demands in their life roles. Speech-language pathologists (SLPs) need to know about clients' speech usage to plan appropriate interventions to meet their life participation goals. The Levels of Speech Usage is a categorical scale intended for client self-report of speech usage, but SLPs may want the option to use it as a proxy-report tool. The relationship between self-report and clinician ratings should be examined before the instrument is used in a proxy format.The primary purpose of this study was to compare client self-ratings with SLP ratings on the Levels of Speech Usage scale. The secondary purpose was to determine if the SLP ratings differed depending on whether or not the SLPs knew about the clients' medical condition.Self-ratings of adults with communication disorders on the Levels of Speech Usage scale were available from prior research. Vignettes about these individuals were created from existing data. Two sets of vignettes were created. One set contained information about demographic information, living situation, occupational status and hobbies or social activities. The second set was identical to the first with the addition of information about the clients' medical conditions and communication disorders. Various communication disorders were represented including dysarthria, voice disorders, laryngectomy, and mild cognitive and language disorders. Sixty SLPs were randomly divided into two groups with each group rating one set of vignettes. The task was completed online. While this does not replicate typical in-person clinical interactions, it was a feasible method for this study. For data analysis, the client self-ratings were considered fixed points and the percentage of SLP ratings in agreement with the self-ratings was calculated.The percentage of SLP ratings in exact agreement with client self-ratings was 44.9%. Agreement was lowest for the less-demanding speech usage categories and highest for the most demanding usage category. There was no significant difference between the two groups of SLPs based on knowledge of medical condition.SLPs often need to document the speech usage levels of clients. This study suggests the potential for SLPs to misjudge how clients see their own speech demands. Further research is needed to determine if similar results would be found in actual clinical interactions. Until then, SLPs should seek the input of their clients when using this instrument.

People use speech in a variety of ways to fulfill life roles and responsibilities. Documenting speech usage is critical in clinical work to plan relevant intervention goals for individual clients, and in clinical research to better describe participant characteristics. A few voice-use classification scales exist; however, they are limited in scope (e.g., focus almost exclusively on occupation) and in applicability beyond voice-disordered populations. The Levels of Speech Usage is a self-report categorical rating scale intended for use with adults across a wide range of communication disorders and life situations. This article presents data from the initial analysis of this scale in a sample of 200 people with spasmodic dysphonia (SD). Speech usage was significantly associated with age, education level, and work status (full time, part time, no paid work). Speech usage was not significantly associated with gender, SD duration, self-rating of voice, treatment status, presence of other medical conditions, Voice Handicap Index, or a measure of communicative participation. Further research is needed to explore the function of this scale in other populations.