Self-Rated Communication-Related Quality of Life of Individuals With Oromandibular Dystonia Receiving Botulinum Toxin Injections

Abstract

CR-QoL was rated lower by participants with OMD as compared with control participants across all ASHA QCL domains/subdomains with "socialization/activities" and "confidence/self-concept" having the largest effect sizes. No differences in CR-QoL were found over the course of the treatment cycle. We advocate for outcome measures that include patient report. The use of patient-reported outcome measures in conjunction with objective or impairment-based outcome measures can help inform meaningful clinical indicators of treatment success. This study adds novel information that may aid our understanding of the experience of living with OMD in this underserviced clinical population.

Perspectives on the Psychosocial Management of Oromandibular Dystonia

“…For example, individuals with OMD reported reductions in QoL related to socialization and activities, confidence and selfconcept, roles and responsibilities, and overall QoL. 34 These results demonstrate that OMD can have a pervasive impact across all aspects of QoL as it relates to communication.…”

“…Dykstra (Page) and her colleagues have explored communicative participation in individuals with OMD using patient-reported questionnaires. 20,33,34 Across all studies, individuals with OMD have reported significant reductions in participation as compared with healthy control participants. The Voice Activity and Participation Profile (VAPP) was administered to an individual with focal lingual dystonia in a 2007 case study by Dykstra and colleagues.…”

“…This is unfortunate because dysarthria can be a disabling aspect of OMD and can have an adverse impact on psychosocial functioning. 20,33,34 In the section that follows, we introduce and describe patientreported outcome measures that assess two aspects of psychosocial functioning: communicative participation and QoL. We describe the current state of knowledge as it relates to communicative participation and QoL in this clinical population, and finally, we will advocate that speech-language pathologists (SLPs) have a role in the care of individuals with OMD through the inclusion of patient-reported outcome measures to provide a comprehensive and holistic management plan.…”

“…There appears to be only one published study, by Page and colleagues, that has sought to explore communication-related QoL of individuals with OMD. 34 One aspect of this study evaluated how 10 individuals with OMD self-rated communication-related QoL as compared with control participants. Using the ASHA Quality of Communication Life scale (QCL), results showed significant differences between individuals with OMD and control participants across all subdomains and domains of the QCL.…”

Use of Botulinum Toxin in Orofacial Clinical Practice

“…In this study with 20 total patients (grouped as 10 control participants and 10 patients with oromandibular dystonia), dysarthria was assessed before and after treatment with the toxin. Significant differences were observed between the participating groups [25].…”