Managing communication changes in persons with multiple sclerosis: Findings from qualitative focus groups.

BACKGROUND: There is growing recognition that communication can be affected in multiple sclerosis (MS) and can negatively impact relationships, employment and psychological well-being. Some persons with MS (PwMS) implement strategies to facilitate their communication; however, some do not. Most PwMS who report communication changes do not engage with speech-language pathology (SLP) services. This raises concerns that a large portion of communication changes associated with MS go under-recognized and unmanaged. Little is known about what PwMS want and need to facilitate effective communication. AIM: To explore what PwMS want and need to better manage their communication changes. METHODS & PROCEDURES: Three focus groups were conducted online using Zoom, with a total of 12 PwMS. Participants were an opportunistic sample of PwMS within Australia recruited via advertisements distributed to various MS organizations and clinics. Data were transcribed verbatim and analysed using thematic content analysis to provide a qualitative analysis of the data. OUTCOMES & RESULTS: Two main themes emerged: (1) accessible knowledge and a holistic approach; and (2) partnerships. Specifically, the identified wants and needs of participants included: (1) assessment; (2) information; (3) raising awareness; (4) support groups; (5) a whole-person approach to intervention; (6) geographically and economically accessible and navigable services; (7) effective patient-physician interactions; and (8) a multidisciplinary team-based approach (e.g., SLP, psychology, neuropsychology, occupational therapy). CONCLUSIONS & IMPLICATIONS: This study identified a wide range of unmet wants and needs of PwMS related to communication changes. Participants wanted improved collaborative partnerships with healthcare professionals to better manage their communication changes. For example, healthcare professionals could ask PwMS about potential communication changes, provide education and make appropriate referrals. Education and information provision could focus on communication changes in MS, factors that trigger or exacerbate communication changes, impacts, self-management strategies, and available supports and services. Specific implications for clinical practice and future research are suggested in this paper, including ideas for patient education materials and content, suggestions for communication-specific screening and information that could be shared in patient-physician interactions, the development of guidelines to systematically screen, assess, manage and monitor communication changes in MS, and the design of evidence-based communication interventions for this clinical population. The results from this study can be used to guide the design of supports and services to help PwMS better manage communication changes, with the aim to reduce the negative impacts. WHAT THIS PAPER ADDS: What is already known on this subject PwMS can experience communication changes across a range of domains, including speech, voice, fluency, expressive and receptive language, and cognitive-linguistic functions. These changes can have profound and far-reaching negative impacts on educational and vocational outcomes, social participation, relationships, psychological well-being, and quality of life. Most PwMS who report communication changes do not engage with SLP services. There has been little research exploring what PwMS want and need to help manage their communication changes. What this paper adds to the existing knowledge This research is the first study of its kind that sets out specifically to explore what PwMS want and need to better manage their communication changes. This study increases our understanding of, and provides valuable insights into, the specific types of supports and services PwMS desire to access, and the partnerships and kinds of interactions PwMS dream of having with healthcare professionals to manage these changes. This information can facilitate the development of future interventions to manage communication changes in MS. What are the potential or actual clinical implications of this work? PwMS wanted healthcare professionals to ask about potential communication changes, provide education and make appropriate referrals. When providing education and information on communication changes in MS, healthcare professionals should focus on covering symptoms, triggers, impacts, self-management strategies, and available supports and services. There is a timely need to develop guidelines and interventions to manage communication changes in MS to reduce their negative impacts.

Adaptation and validation of the Greek version of the Communication and Language Assessment questionnaire for persons with Multiple Sclerosis (CLAMS).

OBJECTIVE: The aim of the present study was to validate the Communication and Language Assessment questionnaire for persons with Multiple Sclerosis (CLAMS) into the Greek language. METHOD: 106 Persons with Multiple Sclerosis (PwMS) and 51 healthy controls (HCs) participated in this study. We evaluated patients' cognitive abilities with the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS). All PwMS completed the CLAMS and three additional questionnaires (Speech Pathology-Specific Questionnaire for persons with Multiple Sclerosis, SMS; Stroke and Aphasia Quality of Life Scale-39, SAQOL-39; the Beck Depression Inventory Fast Screen, BDI-FS), and all HCs filled in the CLAMS. RESULTS: The internal consistency of the CLAMS was excellent (a = 0.933) for the PwMS and a significant difference was found between PwMS and HCs for the total CLAMS score. Statistical analyses showed a significant positive correlation between the CLAMS and the other questionnaires (SMS, BDI, and SAQOL-39) and a statistically significant negative correlation between the CLAMS and the three subtests of the BICAMS (Symbol Digit Modalities Test, Greek Verbal Learning Test-II, and Brief Visuospatial Memory Test-Revised). There was no correlation between the CLAMS and participants' age, disease duration, and disease type. CONCLUSION: The Greek version of the CLAMS is a valid self-reported questionnaire for the evaluation of language and communication symptoms in PwMS.

Adaptation and validation of the Greek version of the Speech Pathology-Specific Questionnaire for Persons with Multiple Sclerosis (SMS).

PURPOSE: The aim of the present study was to adapt and validate the Speech Pathology-Specific Questionnaire for Persons with Multiple Sclerosis (SMS) into the Greek language. METHOD: The study sample consisted of 124 people with multiple sclerosis (PwMS) and 50 healthy controls (HCs). All PwMS underwent cognitive assessment using the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS). Both PwMS and HCs completed the SMS, the Eating Assessment tool (EAT-10), the Voice Handicap Index (VHI), and the Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39). RESULT: Significant difference was found between PwMS and HCs for the EAT-10, SAQOL-39, the total SMS, and the SMS subscales. Discriminant validity analyses revealed a statistically significant difference between PwMS and HCs for the total and subscales SMS. Convergent validity analyses between the total SMS and the SMS subscales, and scores on the BICAMS, EAT-10, SAQOL-39, and VHI in PwMS were significantly correlated, with exception of the SMS Speech/Voice with the Symbol Digit Modalities Test (SDMT) and the Greek Verbal Learning Test-II (GVLT-II). Scores on the EAT-10, SAQOL-39, and VHI in PwMS were also correlated with the total SMS and the SMS subscales in PwMS, HCs, and the total sample. Construct validity analyses revealed that the total SMS and the SMS subscales were significantly correlated with the Expanded Disability Status Scale (EDSS) and years of education, while no associations were found with regards to age, MS subtype (relapsing-remitting MS [RRMS] vs progressive MS [PMS]), disease duration, or sex. The internal consistency of all items was excellent in PwMS and the total sample (Cronbach's alpha was >0.7 after deletion of one item), with the exception of two items, which still fell within the acceptable range (>0.6) for PwMS and the total sample. CONCLUSION: The Greek version of the SMS is a reliable and valid patient-reported outcome measure to assess speech-language and swallowing pathology related symptoms in PwMS, and can be used for research and clinical purposes.

Perspectives from the patient: A content analysis of communication changes, impact, and strategies to facilitate communication in multiple sclerosis.

Purpose: Communication changes in multiple sclerosis (MS) are under-explored and under-recognised. Persons with MS (PwMS) are experts in their condition and play a valuable role in informing clinicians and researchers of their condition. This study aimed to investigate the perspectives of PwMS on: (1) MS-related communication changes, (2) the impact of these communication changes across key aspects of a person's life, including work/studies, relationships, and general quality of life, and (3) strategies used to facilitate communication in daily interactions.Method: Two-hundred and sixty PwMS were recruited internationally and completed an online questionnaire. Content analysis was used to analyse open-ended questionnaire responses.Result: One-hundred and ninety-seven (75.8%) participants reported communication changes, including language, cognitive, speech, voice, and fluency changes. Participants described a variety of personal and environmental factors that influence communication negatively, such as fatigue, stress, and heat. Communication changes were reported to impact on psychological wellbeing, interpersonal relationships, participation and identity in the workforce and career pathways, and tertiary studies. Around 40% of participants reported using a range of overt and covert strategies to manage communication changes. Only 11.2% (n = 22/197) of participants who reported communication changes accessed speech-language pathology (SLP) services.Conclusion: PwMS can experience a wide spectrum of communication changes. These communication changes can have a profound and far-reaching impact on psychological wellbeing and societal participation. Engagement with SLP services is limited compared to the reported prevalence of communication changes. There is a need to raise awareness of the role of SLP in service provision for PwMS to manage communication changes. This paper discusses and provides suggestions for SLP services for PwMS with communication changes. There is a timely need to develop evidence-based interventions to support PwMS manage communication changes and reduce their impact.

Variables Associated with Self-reported Language Impairment in Multiple Sclerosis: A Regression Analysis.

BACKGROUND: Persons with multiple sclerosis (MS) can experience language-related symptoms such as difficulty with word finding, understanding verbal information, and structuring discourse. These symptoms have negative psychological and interpersonal consequences. Studies exploring characteristics of language impairment in MS are limited. The aim of this study was to investigate what symptom-related (eg, fatigue), demographic (eg, age), clinical (eg, MS type), social network, and quality of life (QOL) variables are associated with language impairment in MS. METHODS: Participants were recruited internationally to complete an online questionnaire. A forward stepwise regression analysis was run with the dependent variable being a language impairment index from the Communication and Language Assessment questionnaire for persons with Multiple Sclerosis (CLAMS). Nineteen independent variables were entered into the regression. RESULTS: Two hundred and two participants completed the questionnaire. The CLAMS language impairment score was significantly associated with self-reported cognitive impairment, speech and voice impairment, yes/no response to a binary question on presence of language impairment, group membership and participation, and QOL. The adjusted R2 value was 0.717 (P < .001). CONCLUSIONS: Self-reported language impairment in MS is significantly associated with several symptom-related, social network, and QOL variables. These results provide an early model of language impairment in MS to guide future studies of treatment approaches and causative relationships between variables.

Prevalence of self-reported language impairment in multiple sclerosis and the association with health-related quality of life: An international survey study.

BACKGROUND: Language impairment has only recently begun to be considered a clinical manifestation of MS. A decline in language abilities can lead to restricted participation in everyday activities that require communication, including vocational, social, and educational contexts. OBJECTIVES: The objectives of this study were to identify the prevalence and nature of self-reported language impairment in MS using a validated MS-specific patient-reported outcome measure and to determine the association with health-related quality of life (HRQoL) and demographic and clinical variables. METHODS: In this cross-sectional study, 160 persons with MS completed the language items of the Speech pathology-specific questionnaire for persons with MS (SMS) to assess language and the 12-Item Short Form Survey (SF-12) to assess HRQoL. Participants were recruited internationally through professional MS bodies and support groups and completed all questionnaires online. RESULTS: 75% of persons with MS in this sample self-reported a language impairment. Of the total sample, 65.7% reported difficulty with word retrieval, 53.8% reported difficulty with expressive language, 49.4% reported difficulty with confrontational naming, and 40.6% reported difficulty with receptive language in spoken discourse. Statistical analyses revealed that age, sex, educational status, country of residence, disease duration, age at time of diagnosis, MS subtype, and medication management, were not associated with the prevalence of self-reported language impairment. Participants with self-reported language impairment had lower HRQoL than those without language impairment, scoring lower on both the SF-12 mental and physical component summary scores, with medium to large effect sizes (Cohen's d = 0.66 - 0.83). Participants with self-reported language impairment had higher rates of unemployment than those without language impairment (χ2 = 18.2; p < 0.001). CONCLUSION: Language can be compromised in persons with MS regardless of clinical and demographic characteristics and is associated with lower HRQoL. These findings indicate that frontline healthcare providers need to be aware of potential language impairment in MS and should make timely referrals to speech pathologists for further evaluation and support. Further research is needed to investigate the underlying neural mechanisms of language impairment in MS. In future, this will help guide the design of evidence-based intervention for these symptoms.

Development and validation of a speech pathology-specific questionnaire for persons with multiple sclerosis (SMS).

Purpose: The aim of this study was to develop and validate the Speech pathology-specific questionnaire for persons with Multiple Sclerosis (SMS).Method: Forty-one items were generated through a literature review. Items were submitted to a preliminary psychometric validation process consisting of principal component analysis, internal consistency, test-retest reliability, and floor and ceiling effects using data from 164 participants. Criterion validity was assessed by comparing the SMS with the 12-item Short Form Health Survey (SF-12). Participants were recruited internationally through online channels and questionnaires were completed online.Result: The SMS contains 16 items describing three components: speech and voice, language, and swallowing. Internal consistency (Cronbach's alpha) of the three components was satisfactory (α = 0.89-α = 0.91). Criterion validity was evaluated using Spearman's rank correlation coefficient (ρ). A statistically significant weak to moderate correlation between the SMS and the SF-12 was identified (ρ = -0.004-ρ = -0.359). No floor or ceiling effects were present. The SMS demonstrated strong test-retest reliability. All items had an intra-class correlation coefficient ≥0.70.Conclusion: The SMS is a psychometrically robust patient-reported outcome measure to assess speech-language pathology symptoms in persons with MS.