Search

Quality of life is an important outcome measurement in objectifying the current health status or therapy effects in patients with oropharyngeal dysphagia. In this study, the validity and reliability of the Dutch version of the Deglutition Handicap Index (DHI) and the MD Anderson Dysphagia Inventory (MDADI) have been determined for oncological patients with oropharyngeal dysphagia. At Maastricht University Medical Center, 76 consecutive patients were selected and asked to fill in three questionnaires on quality of life related to oropharyngeal dysphagia (the SWAL-QOL, the MDADI, and the DHI) as well as a simple one-item visual analog Dysphagia Severity Scale. None of the quality-of-life questionnaires showed any floor or ceiling effect. The test-retest reliability of the MDADI and the Dysphagia Severity Scale proved to be good. The test-retest reliability of the DHI could not be determined because of insufficient data, but the intraclass correlation coefficients were rather high. The internal consistency proved to be good. However, confirmatory factor analysis could not distinguish the underlying constructs as defined by the subscales per questionnaire. When assessing criterion validity, both the MDADI and the DHI showed satisfactory associations with the SWAL-QOL (reference or gold standard) after having removed the less relevant subscales of the SWAL-QOL. In conclusion, when assessing the validity and reliability of the Dutch version of the DHI or the MDADI, not all psychometric properties have been adequately met. In general, because of difficulties in the interpretation of study results when using questionnaires lacking sufficient psychometric quality, it is recommended that researchers strive to use questionnaires with the most optimal psychometric properties.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Multiple Sclerosis (MS), a chronic disease of the central nervous system (CNS), affects functional ability and quality of life (QoL). Depression, fatigue, and disability status are among the many factors that have been shown to impact QoL in people with MS, but the extent to which MS-related cognitive impairment is related to QoL is understudied in the literature. The purpose of this study was to determine relevant predictors of QoL from a wide list of symptoms including physical disability, and a multi-dimensional computerized cognitive assessment battery (CAB), depression, fatigue, and demographic variables (including employment status). In addition, the unique predictive power of cognitive impairment on QoL was explored in relation to other common factors of disease impact. 171 people with MS (PwMS) were evaluated with a computerized assessment battery (CAB), EDSS examination, and validated Patient Reported Outcome (PRO) measures (Multiple Sclerosis Impact Scale, MSIS-29; Beck Depression Inventory – Second Edition BDI-2; and the Modified Fatigue Impact Scale, MFIS). 171 PwMS were included [Age: 46.02 years ± 9.85, 124 (72.5%) female]. Depression and fatigue scores were highly correlated with MSIS-29. EDSS, unemployment, memory, executive functioning, and motor skills were moderately correlated with MSIS-29. Predictors of QoL were EDSS, depression, fatigue, executive functioning, and attention. Attention and executive functioning were predictive of QoL even after controlling for demographic variables, fatigue, depression, and physical disability status. Findings indicate the need for comprehensive and quantified evaluation of all factors associated with disease burden, which will ultimately serve to improve the QoL in PwMS through more targeted and patient-centered care. [ABSTRACT FROM AUTHOR]

Highlights • 38% of adults with MS have swallowing problems. • Swallowing problems in MS cause various physical symptoms including coughing, throat clearing, choking on food and liquid. • Swallowing problems in MS result in social consequences including reduced eating desire, increased eating duration and mealtime anxiety. • Swallowing problems, if left untreated will result in serious complications such as dehydration, malnutrition and pneumonia. • Adults with MS with swallowing problems should be referred to speech-language pathologists for further evaluation and management, in order to sustain or improve their swallowing function. Abstract Background Multiple Sclerosis (MS) refers to a chronic inflammation of the central nervous system including the brain and spinal cord. Dysphagia is one of the symptoms that represent challenges in clinical practice for the management of MS patients. Dysphagia can result in serious complications leading to morbidity and death in late stages of MS. However, little attention is given to dysphagia, its symptoms and how it affects the quality of life of adults with MS. Objectives The purpose of this study is to identify the frequency of dysphagia in adults with MS and determine the main symptoms suggestive of dysphagia and its impact on the patients' quality of life. Method In total, 103 adults with MS agreed to participate in the study. Data were collected at the Multiple Sclerosis outpatient Clinic of a major metropolitan Australian hospital using patient reported questionnaires. Results 38% of adults with MS reported having swallowing problems that resulted in various physical and social consequences including but not limited to coughing, throat clearing, choking on food and liquid, reduced eating desire, increased eating duration and mealtime anxiety. Conclusion Adults with MS-related dysphagia had reduced scores across all domains of swallowing-related quality of life. These findings support referral to speech-language pathologists for management of dysphagia from the early stages of the disease. Further work is required to determine whether early intervention for dysphagia can sustain or improve swallowing function as well as swallowing-related quality of life domains further into the disease course. [ABSTRACT FROM AUTHOR]

Objective: The 10-item Dysphagia in Multiple Sclerosis (DYMUS) questionnaire is a self-administered tool used to identify swallowing problems in adults with MS. The questionnaire was not validated against other existing questionnaires to assess its convergent validity. Moreover, its test-retest reliability was not measured previously. Therefore, the purpose of this study was to assess the factor analysis, internal consistency and test-retest reliability of the DYMUS, as well as its convergent validity against an established and validated questionnaire, the EAT-10.Method: English-speaking adults with MS in New South Wales, Australia who were seen for routine medical check-ups were invited to complete two questionnaires across two phases. One hundred participants completed phase 1, while 55 completed phase 2. Statistical analyses were performed to investigate the psychometric properties of the DYMUS questionnaire.Results: Internal consistency (Cronbach's Alpha) reduced the DYMUS questionnaire from ten to five items. The shortened version of the DYMUS showed high internal consistency (alpha = 0.904). It also showed satisfactory reproducibility, and adequate correlation with the 10-item Eating Assessment Tool (EAT-10).Conclusion: Evaluation of the DYMUS resulted in a shortened version of the questionnaire with five questions related to dysphagia. This shortened version is considered an easy and useful tool in identifying patients with MS-related dysphagia. [ABSTRACT FROM AUTHOR]

Background:Both the immediate beneficial physiological changes in a laboratory setting and the long-term clinical outcomes of heat and moisture exchanger (HME) use are well described. So far, there has not been any research published that provides detailed insight in the pattern of changes in both respiratory function and patients’ experiences with HMEs in the first weeks of use.Methods:A multicenter time-series study design with a 2-week double baseline period. All patients used the XtraHME for 12 weeks afterward. Data were collected 2 weeks, 6 weeks, and 12 weeks after the start of HME use.Results:Data of 30 patients were analyzed. Pulmonary symptoms decreased significantly during the 12 weeks of HME use. After 2 weeks, a significant decrease in daily coughs and daily forced expectorations was seen. The general quality of life showed a significant increase throughout the study. More general physical complaints also significantly decreased with HME use. Patient satisfaction with the HME was high.Conclusions:This study shows that there is a significant influence of the XtraHME on pulmonary status that can already be observed after 2 weeks of using the XtraHME and continues to improve further after 6 weeks of XtraHME use. [ABSTRACT FROM AUTHOR]