The Effects of Self-Esteem, Coping, and Voice-Related Quality of Life on Communicative Participation Before and After BOTOX® Treatment for Spasmodic Dysphonia
“…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.…”
Section: Voice Disordersmentioning
confidence: 94%
“…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.…”
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.
“…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.…”
Section: Voice Disordersmentioning
confidence: 94%
“…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.…”
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.
“…Laryngeal dystonia (LD) affects voice and communication, resulting in negative emotional, functional, and occupational impacts. [6][7][8]24,25 The lack of understanding of the pathophysiology of LD, its incurable nature, and the need for repeated treatments over time for symptom management all contribute to patient frustration. Work has been done previously to delineate the etiology of LD, but comprehensive understanding of this disease entity remains elusive.…”
Section: Discussionmentioning
confidence: 99%
“…The clinical manifestation of these voice disorders (e.g., voice breaks, task specificity, disruption of speech, effortful phonation, dysfluency, rough voice quality, etc.) is expansive, 3–6 and the degree of impact on patients' functionality and quality of life is also well‐known 6–8 …”
Section: Introductionmentioning
confidence: 99%
“…is expansive, [3][4][5][6] and the degree of impact on patients' functionality and quality of life is also well-known. [6][7][8] Despite extensive prior research, complete understanding of the precise pathogenesis of LD remains elusive. Neurological, genetic, epidemiological, and environmental factors have all been suggested to play a role.…”
Background/ObjectivesLaryngeal sensory abnormality has been implicated as a component of adductor laryngeal dystonia (AdLD). The study objective was to assess laryngopharyngeal sensation in AdLD utilizing a calibrated, tactile aesthesiometer to deliver differential stimuli to lateral pyriform sinus (LPS), aryepiglottic fold (AEF), and false vocal fold (FVF).MethodsPatients with known Botox‐responsive AdLD underwent sensory testing using a previously‐validated methodology involving calibrated tactile stimuli (6–0, 5–0, 4.5–0, 4–0 nylon monofilaments). Laryngeal adductor reflex (LAR) and participant‐rated perceptual strength of stimulI were evaluated. Responses were compared to normative controls (n = 33). Two‐samples, Mann–Whitney and Fisher exact tests compared mean strength ratings and LAR between AdLD and control groups. Mixed‐effects logistic regression and linear models assessed association of filament size, stimulus site, age, sex, and LD status on LAR and perceptual strength rating respectively.ResultsThirteen AdLD patients (nine women, mean age 60+/−15 years) completed testing. Average LAR response rates were higher amongst all filament sizes in AdLD versus controls at LPS (56.3% vs. 35.7%) and AEF (96.1% vs. 70.2%) with comparable rates at FVF (90.2% vs. 91.7%). AdLD had 3.3 times the odds of observed LAR compared to controls (p = 0.005), but differences in subjective detection of stimuli, perceptual strength ratings, and cough/gag rates were insignificant on multivariate modeling (p > 0.05).ConclusionsThis is the first study to objectively assess laryngopharyngeal sensation in AdLD. Findings demonstrated increased laryngopharyngeal sensation in AdLD compared to controls. The identification of increased laryngeal hypersensitivity in these patients may improve understanding of AdLD pathophysiology and identify future targets for intervention.Level of Evidence2 Laryngoscope, 133:2271–2278, 2023
Purpose
Individuals with primary progressive apraxia of speech have apraxia of speech (AOS) as the initial and predominant symptom. Many develop aphasia and/or dysarthria later in the disease course. It was previously demonstrated that patients with neurodegenerative AOS experience reduced participation in communication that is further exacerbated by co-occurring language deficits (
Utianski et al., 2020
). Measures of disease severity did not necessarily correlate with measures of participation restrictions. The aim of this follow-up study was to describe changes in communication limitations in these patients, again measured by (a) the patient via the Communicative Participation Item Bank (CPIB) and (b) the speech-language pathologist via the American Speech-Language-Hearing Association's (ASHA's) Functional Communication Measures (FCMs) and an adapted motor speech disorder (MSD) severity rating to determine if there are significant changes in these and other objective speech and language measures at follow-up after 1 year.
Method
Of the 24 patients reported in the study of
Utianski et al. (2020)
, 17 (10 men, seven women) returned for a second visit approximately 1 year following the first visit. Identical procedures were utilized; the communication measures collected at each visit were statistically compared. Correlations were calculated between the participation ratings and other clinical assessment measures at the second visit and for the change in scores on those measures between the first and second visits.
Results
There were statistically significant differences in AOS and aphasia severity between visits. There were significant changes in clinical assessments, MSD severity rating, and all ASHA FCMs between visits, but not the CPIB. Correlation analyses suggest the relationships among clinical and participation measures are complex; overall, patients with more severe changes in AOS experienced greater changes in participation restrictions.
Conclusions
The findings of this study support the use of patient-reported outcome measures as they may better reflect the patient experience, including the influence of factors such as ongoing speech therapy and the emergence of neuropsychiatric features, and associated changes in day-to-day functioning, when other measures may simply index the progression of the disease.
Supplemental Material
https://doi.org/10.23641/asha.16528512
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