Swallowing with Noninvasive Positive-Pressure Ventilation (NPPV) in Individuals with Muscular Dystrophy: A Qualitative Analysis.

The purpose of the study is to describe experiences of swallowing with two forms of noninvasive positive-pressure ventilation (NPPV): mouthpiece NPPV (M-NPPV) and nasal bilevel positive airway pressure (BPAP) in people with muscular dystrophy. Ten men (ages 22-42 years; M = 29.3; SD = 7.1) with muscular dystrophy (9 with Duchenne's; 1 with Becker's) completed the Eating Assessment Tool (EAT-10; Ann Otol Rhinol Laryngol 117(12):919-924 [33]) and took part in semi-structured interviews. The interviews were audio recorded, transcribed, and verified. Phenomenological qualitative research methods were used to code (Dedoose.com) and develop themes. All participants affirmed dysphagia symptoms via responses on the EAT-10 (M = 11.3; SD = 6.38; Range = 3-22) and reported eating and drinking with M-NPPV and, to a lesser extent, nasal BPAP. Analysis of interview data revealed three primary themes: (1) M-NPPV improves the eating/drinking experience: Most indicated that using M-NPPV reduced swallowing-related dyspnea. (2) NPPV affects breathing-swallowing coordination: Participants described challenges and compensations in coordinating swallowing with ventilator-delivered inspirations, and that the time needed to chew solid foods between ventilator breaths may lead to dyspnea and fatigue. (3) M-NPPV aids cough effectiveness: Participants described improved cough strength following large M-NPPV delivered inspirations (with or without breath stacking). Although breathing-swallowing coordination is challenging with NPPV, participants reported that eating and drinking is more comfortable than when not using it. Overall, eating and drinking with NPPV delivered via a mouthpiece is preferred and is likely safer for swallowing than with nasal BPAP. M-NPPV (but not nasal BPAP) is reported to improve cough effectiveness, an important pulmonary defense in this population.

Communicative participation and quality of life in head and neck cancer.

OBJECTIVE: The purpose of this study was to determine how a new self-report outcome measure of communicative participation, the Communicative Participation Item Bank (CPIB), related to disease- and discipline-specific quality of life (QOL) outcomes in a head and neck cancer (HNC) population. METHODS: One hundred ninety-five individuals treated for HNC completed the CPIB, the University of Washington Quality of Life questionnaire (UW-QOL), and the Voice Handicap Index-10 (VHI-10). RESULTS: Results revealed moderate QOL scores across the UW-QOL (mean scores: global QOL = 66; physical subscale = 70; social-emotional subscale = 73) and VHI-10 (mean = 16). Correlations between the CPIB and the UW-QOL scores were statistically significant (P < .001) but relatively weak (r = .37-.38). As hypothesized, a stronger correlation was found between the CPIB and the VHI-10 (r = -0.79; P < .001). CONCLUSION: Clinicians may consider adopting the CPIB to complement existing tools in assessing communication outcomes after HNC.

Associations between laryngeal and cough dysfunction in motor neuron disease with bulbar involvement.

True vocal fold (TVF) dysfunction may lead to cough ineffectiveness. In individuals with motor neuron disease (MND), cough impairment in the context of dysphagia increases risk for aspiration and respiratory failure. This study characterizes differences and associations between TVF kinematics and airflow during cough in individuals with bulbar MND. Sequential glottal angles associated with TVF movements during volitional cough were analyzed from laryngeal video endoscopy examinations of adults with bulbar MND (n = 12) and healthy controls (n = 12) and compared with simultaneously collected cough-related airflow measures. Significant group differences were observed with airflow and TVF measures: volume acceleration (p ≤ 0.001) and post-compression abduction TVF angle average velocity (p = 0.002) were lower and expiratory phase rise time (p = 0.001) was higher in the MND group. Reductions in maximum TVF angle during post-compression abduction in the MND group approached significance (p = 0.09). All subjects demonstrated complete TVF and supraglottic closure during the compression phase of cough, except for incomplete supraglottic closure in 2/12 MND participants. A strong positive relationship between post-compression maximum TVF abduction angle and peak expiratory cough flow was observed in the MND group, though it was not statistically significant (r = 0.55; p = 0.098). Reductions in the speed and extent of TVF abduction are seen during the expulsion phase of cough in individuals with MND. This may contribute to cough impairment and morbidity.

Scoping review of common secondary conditions after stroke and their associations with age and time post stroke.

BACKGROUND: Health care providers need to be alert to secondary conditions that might develop after stroke so that these conditions can be prevented or treated early to reduce further deterioration of health and quality of life. OBJECTIVES: To review and describe the prevalence of secondary conditions after stroke and to summarize associations between secondary conditions and age and time post stroke. METHODS: A scoping review of studies pertaining to secondary conditions after stroke published between 1986 and 2011 was conducted. RESULTS: Seventy-six articles provided information regarding 6 secondary conditions: depression, pain, falls, fatigue, bowel/bladder problems, and sleep difficulties. Prevalence varied widely across studies for each condition. The limited repeated-measures evidence suggests that secondary conditions tend to occur in the first weeks or months post stroke and may remain relatively stable over time. Other evidence from regression analyses suggests either no significant associations between time post stroke or age or mixed results. Secondary conditions appear to be most commonly associated with severity of impairments. CONCLUSIONS: Health care providers need to be alert to the development of secondary conditions after stroke in individuals as they age as well as in the poststroke time span. Obtaining a clear understanding of the prevalence of secondary conditions and associations with age and time post stroke is difficult because of variations in research methodologies. Future research is needed to define secondary condition prevalence and risk factors more clearly and to identify interventions that could reduce the prevalence and impact of these conditions on quality of life.

Communication support through multimodal supplementation: a scoping review.

Speech supplementation strategies improve spoken communication for people with motor speech disorders who experience reduced speech intelligibility. The purpose of this review was to summarize the literature on traditional supplementation strategies (e.g., alphabet supplementation, topic supplementation, and gestural supplementation) and to expand the definition of speech supplementation to include additional modalities, such as augmenting speech with pictures via mobile technology, and conversation management strategies. Results showed that studies of traditional supplementation consistently reported positive outcomes, including increased intelligibility, decreased speech rate, and positive attitudes toward speakers. New modalities, such as supplementing speech through digital photos, may come to be integrated with traditional approaches, given the proliferation of digital photography and mobile tablet technologies. In addition, new research is exploring the role of communication partners in dyads where one speaker has dysarthria, as well as strategies that communication partners employ to understand dysarthric speech.

Endoscopic assessment of vocal fold movements during cough.

OBJECTIVES: Little is known about the function of the true vocal folds (TVFs) during cough. The objective of this study was to determine the reliability of measuring TVF movements during cough and to obtain preliminary normative data for these measures. METHODS: Sequential glottal angles associated with TVF adduction and abduction across the phases of cough were analyzed from laryngeal videoendoscopy records of 38 young healthy individuals. RESULTS: The intraobserver and interobserver reliability of 3 experienced measurers was high (intraclass correlation of at least 0.97) for measuring sequential and maximum glottal angles. The TVF abduction velocity during expulsion was significantly higher than the precompression adduction velocity (p = 0.002), but there were no significant differences in maximum angle. No statistically significant differences were seen in maximum TVF angle and velocity when they were compared between the sexes and between the levels of cough strength. True vocal fold closure following expulsion occurred in 42% of soft coughs and in 57% of moderate to hard coughs. CONCLUSIONS: The TVF abduction angles during cough can be reliably measured from laryngeal videoendoscopy in young healthy individuals. The TVF movements are faster for expulsion abduction than for precompression adduction, but the extents of abduction are similar. To validly determine the cough phase duration, simultaneous measures of airflow are needed.

Communicative Participation in Dysarthria: Perspectives for Management.

Communicative participation is restricted in many conditions associated with dysarthria. This position paper defines and describes the construct of communicative participation. In it, the emergence of this construct is reviewed, along with the predictors of and variables associated with communicative participation in the dysarthrias. In doing so, the features that make communicative participation unique and distinct from other measures of dysarthria are highlighted, through emphasizing how communicative participation cannot be predicted solely from other components of the World Health Organization's International Classification of Functioning, Disability and Health (ICF), including levels of impairment or activity limitations. Next, the empirical literature related to the measurement of communicative participation and how this research relates to dysarthria management is presented. Finally, the development of robust clinical measures of communicative participation and approaches to management is described from the point of view of the clinician. We argue that communicative participation should be a primary focus of treatment planning and intervention to provide patient-centered, holistic, and value-based clinical interventions which are responsive to the needs of individuals living with dysarthria.

Older adults' perceptions of current and future hearing healthcare services in Australia, England, US and Canada.

OBJECTIVE: A high prevalence of hearing loss in older adults contrasts with a small proportion of people who seek help. Emerging developments in hearing healthcare (HHC) could reduce costs but may not increase access. This study evaluated older adults' perceptions of current and future HHC services in Australia, England, US and Canada to explore potential levers and system improvements. METHODS: Semi-structured focus groups (n = 47) were conducted, and data were analysed using a directed content analysis. Participants were adults 60 years and older with a) no hearing problems; b) hearing problems and hearing aid use; and c) hearing problems and no hearing aid use. RESULTS: Perceived barriers, facilitators and preferences were largely consistent across countries, with stigma and trust in HHC being the barriers most often discussed. CONCLUSION: Although cost and access were consistently deemed important, there may be limited change in help-seeking and HHC uptake unless the key barriers of trust and stigma are addressed. When seeking to undertake transformative change to healthcare it is important to engage recipients of care to understand existing barriers and coproduce a user-centered solution.

Communicating about the experience of pain and fatigue in disability.

PURPOSE: To examine the experiences of people with chronic disabling conditions as they communicate with health care providers about pain and fatigue. METHOD: Twenty-three adults with a variety of chronic disabling conditions participated in 5 focus groups. The following issues were raised: tell me about your pain/fatigue; what things go along with pain/fatigue? how do you talk about pain/fatigue with your health care provider (HCP)? What should your HCP know that they do not ask you about? RESULTS: Results of qualitative analysis suggested two major themes. The first theme was labeled "Putting it in words" and suggests that both pain and fatigue are described in many ways, including the dimensions of type, intensity, level of interference and temporal aspects. Participants reported difficulty with responding to a single question that asked them to assign a number to their level of pain or fatigue. The second theme was labeled, "Let's talk about it" and suggested that participants wanted HCPs "to listen and believe me when I describe my experience". They wanted to be asked about how pain or fatigue interferes with life and about compensatory strategies rather than being asked to rate symptom intensity. Participants wished to be viewed as experts and to be actively involved in decisions about their health care. CONCLUSIONS: Pain and fatigue were viewed as having many facets that are associated in complex ways with other aspects of the health/disability condition. From the participants' perspective, assignment of a pain intensity rating does not represent the complexity of their pain experience. Suggestions are provided for HCPs when communicating about pain and fatigue with people with chronic conditions.

Being in- or out-of-sync: couples' adaptation to change in multiple sclerosis.

PURPOSE: To examine how couples adapt to the challenges of multiple sclerosis (MS) and to identify possible risk factors for relational stress. METHOD: Semi-structured interviews were conducted with eight couples to explore how participants defined and identified the strengths and challenges in their relationship, negotiated role changes and received external support. Conceptual frameworks on how families adapt to chronic illness guided within and across case analyses. We identified patterns in the couples' current responses to the demands and stressors of MS. RESULTS: Two patterns of adaptation to MS were identified as being 'in-sync' or 'out-of-sync'. Characteristics of the four couples currently in-sync included having a relapsing-remitting type of MS, which proceeded at a pace that enabled both partners to maintain their social roles and identity, and a collaborative problem solving style. The four couples currently out-of-sync had a rapid progression of MS, loss of employment before retirement age, differences in personal styles that shifted from being complementary to oppositional in the face of increased demands and struggles with parenting adolescent children. CONCLUSIONS: Clinicians can use these data to assess possible relational strain in couples with MS and identify families who might benefit from referrals to family therapy or other relational support.

The best possible start: A qualitative study on the experiences of parents of young children with or at risk for fetal alcohol spectrum disorders.

BACKGROUND: The developmental outcomes and life course trajectories of young children with or at-risk for fetal alcohol spectrum disorders (FASD) can be optimized when individual and family needs are identified early and met with family-centered early intervention (EI) services. However, little is known about access to and quality of EI services with this high-needs population. METHOD: Twenty-five biological or adoptive parents of children with or at high risk for FASD, living in the greater area of Seattle, Washington participated in this qualitative study. Three focus groups were conducted using a semi-structured interview guide. Participants described their experience with EI, as well as other supports and challenges faced in their child's first three years of life. Interviews were audio recorded, transcribed verbatim and coded using phenomenological methods. Themes that were consistent across participant groups emerged from the data, as well as themes that showed differences among participant experiences. RESULTS: Common EI supports and needs between biological and adoptive parent groups were identified. In addition, perspectives and needs unique to each parent group were revealed. Themes were identified and organized into three categories: (1) child needs; (2) parent needs and priorities; and (3) EI capacity. When parents talked about their child's cognitive, physical, communication or adaptive development, they all discussed how EI was meeting those needs. In contrast, when parents expressed concern for their child's social-emotional development, a description of how EI was supporting these needs was missing from the conversation. Parents appreciated when EI providers were truthful, provided anticipatory guidance, and connected them with supports for their own social-emotional well-being. Yet there were unmet needs for respite care, and parents expressed that support for basic needs related to child or family survival was not consistently recognized as a top priority for families. This high-risk group of young children and their parents also encountered a multitude of transitions in their child's early years and later. Parents wanted more support navigating these transitions as they entered or moved through different systems of care. CONCLUSIONS: Parents appreciated and endorsed the importance of EI with its provision of individualized, family-centered supports and resources. Examination of the gaps and unmet needs that are common and distinct underscore the importance of an FASD-informed approach to EI. Study findings provide insight into areas for which EI enhancements could be developed in order to tailor supports for the complex needs of this diverse population of children and parents.

Developing the communicative participation item bank: Rasch analysis results from a spasmodic dysphonia sample.

PURPOSE: The purpose of this study was to conduct the initial psychometric analyses of the Communicative Participation Item Bank-a new self-report instrument designed to measure the extent to which communication disorders interfere with communicative participation. This item bank is intended for community-dwelling adults across a range of communication disorders. METHOD: A set of 141 candidate items was administered to 208 adults with spasmodic dysphonia. Participants rated the extent to which their condition interfered with participation in various speaking communication situations. Questionnaires were administered online or in a paper version per participant preference. Participants also completed the Voice Handicap Index (B. H. Jacobson et al., 1997) and a demographic questionnaire. Rasch analyses were conducted using Winsteps software (J. M. Linacre, 1991). RESULTS: The results show that items functioned better when the 5-category response format was recoded to a 4-category format. After removing 8 items that did not fit the Rasch model, the remaining 133 items demonstrated strong evidence of sufficient unidimensionality, with the model accounting for 89.3% of variance. Item location values ranged from -2.73 to 2.20 logits. CONCLUSIONS: Preliminary Rasch analyses of the Communicative Participation Item Bank show strong psychometric properties. Further testing in populations with other communication disorders is needed.

The Consequences of Oromandibular Dystonia on Communicative Participation: A Qualitative Study of the Insider's Experiences.

Purpose The purpose of this study was to obtain a self-reported account of the experience of living with oromandibular dystonia (OMD) to gain a better understanding of both the daily facilitators and barriers to communicative participation and the strategies used for adapting to life with OMD. Method Eight individuals with OMD and dysarthria participated in 1 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 Three major themes and 7 subthemes emerged from the analysis of interview data. First, "speaking is different now" provided examples of how speech changes are manifested in various life situations. Second, "my roles have changed" addressed how OMD has impacted work, home, and social roles. Third, "I accept it and move on" involved finding strategies that help and adopting a different perspective. Conclusion We suggest that the management of OMD must take a more holistic approach by addressing consequences beyond the physical symptoms and be tailored to each individual based on his or her personal concerns and goals.

Experiences of Speaking With Noninvasive Positive Pressure Ventilation: A Qualitative Investigation.

Purpose The aim of this study was to describe experiences of speaking with 2 forms of noninvasive positive pressure ventilation (NPPV)-mouthpiece NPPV (M-NPPV) and nasal bilevel positive airway pressure (BPAP)-in people with neuromuscular disorders who depend on NPPV for survival. Method Twelve participants (ages 22-68 years; 10 men, 2 women) with neuromuscular disorders (9 Duchenne muscular dystrophy, 1 Becker muscular dystrophy, 1 postpolio syndrome, and 1 spinal cord injury) took part in semistructured interviews about their speech. All subjects used M-NPPV during the day, and all but 1 used BPAP at night for their ventilation needs. Interviews were audio-recorded, transcribed, and verified. A qualitative descriptive phenomenological approach was used to code and develop themes. Results Three major themes emerged from the interview data: (a) M-NPPV aids speaking (by increasing loudness, utterance duration, clarity, and speaking endurance), (b) M-NPPV interferes with the flow of speaking (due to the need to pause to take a breath, problems with mouthpiece placement, and difficulty in using speech recognition software), and (c) nasal BPAP interferes with speaking (by causing abnormal nasal resonance, muffled speech, mask discomfort, and difficulty in coordinating speaking with ventilator-delivered inspirations). Conclusion These qualitative data from chronic NPPV users suggest that both M-NPPV and nasal BPAP may interfere with speaking but that speech is usually better and speaking is usually easier with M-NPPV. These findings can be explained primarily by the nature of the 2 ventilator delivery systems and their interfaces.

Managing activity difficulties at home: a survey of Medicare beneficiaries.

OBJECTIVE: To describe assistance from helpers and use of assistive technology and environmental modification by community-dwelling people with difficulties in activities of daily living (ADLs) and instrumental activities of daily living (IADLs). DESIGN: Cross-sectional study using the 2004 Medicare Current Beneficiary Survey. SETTING: Community. PARTICIPANTS: Nationally representative sample of 14,500 Medicare beneficiaries (mean age, 71.5 y; 55% female; 49% currently married; 68% living with others; 84% white). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Self-reported difficulty with ADLs and IADLs; uses of help, assistive technology, and/or environmental modification. RESULTS: Difficulties were reported most frequently for heavy housework, walking, and shopping; money management, shopping, and light housework were reported as activities most often needing a helper. Walking, bathing, and toileting were activities most often needing uses of assistive technology. Bathroom modifications were the most commonly reported environmental modification. Results from a logistic regression showed that advancing age was the primary factor associated with increasing use of helpers and assistive technology or both for difficult activities. CONCLUSIONS: Uses of helpers, assistive technology, and environmental modification are common but vary by type of ADL and/or IADL and age. Focused studies regarding uses of help and access to assistive technology and environmental modification appear needed to support community living. Public education about methods and types of accommodations appears needed and may substitute for or augment guidance from care providers.

A longitudinal evaluation of persons with disabilities: does a longitudinal definition help define who receives necessary care?

OBJECTIVE: To assess, using a longitudinal definition, the impact of disability on a broad range of objective health care quality indicators. DESIGN: Longitudinal cohort study following up with patients over several years. The first 2 interviews, 1 year apart, were used to determine each patient's disability status in activities of daily living (ADLs). Assessment of the health care indicators commenced after the second interview and continued throughout the survey period (an additional 1-3y). SETTING: National survey. PARTICIPANTS: Participants (N=29,074) of the Medicare Current Beneficiary Survey (1992-2001) with no, increasing, decreasing, and stable ADL disability. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The incidence of 5 avoidable outcomes, receipt of 3 preventive care measures, and adherence to 32 diagnostically based indicators assessing the quality of treatment for acute myocardial infarction [AMI], angina, breast cancer, cerebrovascular accident, transient ischemic attack, cholelithiasis, chronic obstructive pulmonary disease [COPD], congestive heart failure, depression, gastrointestinal bleeding, diabetes, and hypertension. RESULTS: For most indicators, less than 75% of eligible patients received necessary care, regardless of disability status. For 5 indicators, less than 50% of patients received appropriate treatment. In a logistic regression analysis that controlled for patient age, sex, race, and income, disability status was a significant factor in 7 quality measures (AMI, breast cancer, COPD, diabetes, angina, pneumonia, annual visits). CONCLUSIONS: Using a longitudinal definition of disability and objective health quality indicators, we found that disability status can be an important factor in determining receipt of quality health care in a broad range of diagnostic categories. However, the impact of disability status varies depending on the indicator measured. In this cohort of patients, the changing nature of a person's disability seems to have less impact than whether they ever have had any functional deficits.

Developing a scale of communicative participation: a cognitive interviewing study.

PURPOSE: To revise and improve the instructions, candidate items and response format for a tool to measure communicative participation. METHOD: Cognitive interviewing techniques, designed to study the process that respondents use to answer survey questions, were used to test a bank of candidate items for a measure of communicative participation. Twelve participants with spasmodic dysphonia (SD), a neurologic condition characterized by voice and speech changes, were asked to complete a sample questionnaire and then were interviewed regarding the clarity of instructions, candidate items and response format. Analysis of the interviews was conducted using qualitative techniques and resulted in a series of modifications to the measurement tool. RESULTS: Problems identified related to candidate items included inadequate context, double-barreled or ambiguous items, redundancy, unclear or generally confusing items, infrequent situations, and cultural sensitivity. Participants preferred response options that asked them to rate interference rather than other dimensions such as satisfaction. CONCLUSIONS; Subtle differences in items and response options make key differences in how participants interpret and make decisions about their responses. Rich contextual information is needed in order to respond to items that sample communicative participation. Participants preferred response options that capture the barriers that they experience when participating in everyday communication situations.

Measuring participation in people living with multiple sclerosis: a comparison of self-reported frequency, importance and self-efficacy.

PURPOSE: To compare three dimensions related to participation in everyday situations in community-dwelling adults with multiple sclerosis (MS). METHODS: Mail survey was obtained from 112 respondents. Data were analyzed using Kendall's tau-b correlation coefficients between responses to participation items relative to three question dimensions (importance, frequency, and self-efficacy) and criterion variables (mobility, depression, general health, fatigue and pain). RESULTS: No significant associations were found between item responses in the importance dimension and the criterion variables. Weak associations were found for items in the frequency dimension, and stronger associations were found for items in the self-efficacy dimension. CONCLUSIONS: Different dimensions of participation in specific life situations yielded different responses and associations of those responses with key criterion measures. Subjective importance of participating in everyday situations is relatively independent of measures of mobility, general health, depression, fatigue and pain. Subjective judgments of self-efficacy for participation are more closely linked to these criterion measures. Caution is warranted when interpreting scales of participation because participation is a complex construct, potentially composed of several dimensions.

The Relationship Between Non-Orthographic Language Abilities and Reading Performance in Chronic Aphasia: An Exploration of the Primary Systems Hypothesis.

Purpose: This study investigated the relationship between non-orthographic language abilities and reading in order to examine assumptions of the primary systems hypothesis and further our understanding of language processing poststroke. Method: Performance on non-orthographic semantic, phonologic, and syntactic tasks, as well as oral reading and reading comprehension tasks, was assessed in 43 individuals with aphasia. Correlation and regression analyses were conducted to determine the relationship between these measures. In addition, analyses of variance examined differences within and between reading groups (within normal limits, phonological, deep, or global alexia). Results: Results showed that non-orthographic language abilities were significantly related to reading abilities. Semantics was most predictive of regular and irregular word reading, whereas phonology was most predictive of pseudohomophone and nonword reading. Written word and paragraph comprehension were primarily supported by semantics, whereas written sentence comprehension was related to semantic, phonologic, and syntactic performance. Finally, severity of alexia was found to reflect severity of semantic and phonologic impairment. Conclusions: Findings support the primary systems view of language by showing that non-orthographic language abilities and reading abilities are closely linked. This preliminary work requires replication and extension; however, current results highlight the importance of routine, integrated assessment and treatment of spoken and written language in aphasia. Supplemental Material: https://doi.org/10.23641/asha.7403963.

The psychosocial consequences of BOTOX injections for spasmodic dysphonia: a qualitative study of patients' experiences.

OBJECTIVES/HYPOTHESIS: The purpose of this study is to examine the psychosocial consequences of BOTOX (Allergan, Inc. Irvine, CA) treatment for spasmodic dysphonia (SD). This article also explores how patients judge the success of treatment and make decisions about future treatment based on psychosocial issues relevant to them. STUDY DESIGN: This study follows the phenomenological tradition of qualitative inquiry in which the objective is to explore the lived experiences of a group of persons who share a common phenomenon, in this case receiving BOTOX injections for SD. METHODS: Six adults with SD who had been receiving BOTOX injections on a long-term basis participated in face-to-face interviews. The interviews were recorded, transcribed, and analyzed according to phenomenological guidelines to identify consistent themes as well as differences among participants' experiences. RESULTS: The results are summarized in three primary themes that suggest (1) participants' experiences vary over time based on changes in factors such as lifestyle and personal priorities; (2) BOTOX has multidimensional psychosocial implications in physical, personal, and social domains; and (3) participants individualize their treatment regimens, taking into consideration the burden of treatment, scheduling priorities, and other strategies to maximize the benefits of BOTOX. CONCLUSIONS: Based on this study, suggestions are provided for future research into a psychosocial outcome measurement, including longitudinal evaluations that accommodate changing patient priorities over time; multidimensional evaluations that incorporate physical, personal, and social issues; evaluations that include a measure of the burden of treatment; and evaluations that support a shared decision-making model with the voice clinicians.