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Dysarthria is disabling in persons with degenerative ataxia. There is limited evidence for speech therapy interventions. In this pilot study, we used the Voice trainer app, which was originally developed for patients with Parkinson's disease, as a feedback tool for vocal control. We hypothesized that patients with ataxic dysarthria would benefit from the Voice trainer app to better control their loudness and pitch, resulting in a lower speaking rate and better intelligibility. This intervention study consisted of five therapy sessions of 30 min within 3 weeks using the principles of the Pitch Limiting Voice Treatment. Patients received real-time visual feedback on loudness and pitch during the exercises. Besides, they were encouraged to practice at home or to use the Voice trainer in daily life. We used observer-rated and patient-rated outcome measures. The primary outcome measure was intelligibility, as measured by the Dutch sentence intelligibility test. Twenty-one out of 25 included patients with degenerative ataxia completed the therapy. We found no statistically significant improvements in intelligibility (p = .56). However, after the intervention, patients were speaking slower (p = .03) and the pause durations were longer (p < .001). The patients were satisfied about using the app. At the group level, we found no evidence for an effect of the Voice trainer app on intelligibility in degenerative ataxia. Because of the heterogeneity of ataxic dysarthria, a more tailor-made rather than generic intervention seems warranted., (© 2024. The Author(s).)

Background and Objectives: Oculopharyngeal muscular dystrophy (OPMD) is a rare progressive neuromuscular disease. MRI is one of the techniques that is used in neuromuscular disorders to evaluate muscle alterations. The aim of this study was to describe the pattern of fatty infiltration of orofacial and leg muscles using quantitative muscle MRI in a large national cohort and to determine whether MRI can be used as an imaging biomarker of disease progression in OPMD., Methods: Patients with OPMD (18 years or older) were invited from the national neuromuscular database or by their treating physicians and were examined twice with an interval of 20 months, with quantitative MRI of orofacial and leg muscles to assess fatty infiltration which were compared with clinical measures., Results: In 43 patients with genetically confirmed OPMD, the muscles that were affected most severely were the tongue (mean fat fraction: 37.0%, SD 16.6), adductor magnus (31.9%; 27.1), and soleus (27.9%; 21.5) muscles. The rectus femoris and tibialis anterior muscles were least severely affected (mean fat fractions: 6.8%; SD 4.7, 7.5%; 5.9). Eleven of 14 significant correlations were found between fat fraction and a clinical task in the corresponding muscles ( r = -0.312 to -0.769, CI = -0.874 to -0.005). At follow-up, fat fractions had increased significantly in 17 of the 26 muscles: mean 1.7% in the upper leg muscles (CI = 0.8-2.4), 1.7% (1.0-2.3) in the lower leg muscles, and 1.9% (0.6-3.3) in the orofacial muscles ( p < 0.05). The largest increase was seen for the soleus (3.8%, CI = 2.5-5.1). Correlations were found between disease duration and repeat length vs increased fat fraction in 7 leg muscles ( r = 0.323 to -0.412, p < 0.05)., Discussion: According to quantitative muscle MRI, the tongue, adductor magnus and soleus show the largest fat infiltration levels in patients with OPMD. Fat fractions increased in several orofacial and leg muscles over 20 months, with the largest fat fraction increase seen in the soleus. This study supports that this technique is sensitive enough to show worsening in fat fractions of orofacial and leg muscles and therefore a responsive biomarker for future clinical trials.

Background: Communication difficulties are common in people with dementia, and often present from an early stage. However, direct treatment options for people with dementia that positively influence their daily communication are scarce., Aims: To evaluate the potential impact and feasibility of a personalized logopaedic intervention., Methods & Procedures: A total of 40 community-dwelling persons with dementia and their caregivers were recruited. Five experienced speech and language therapists (SLTs) delivered the six-session Com-mens intervention at home. Com-mens aims to improve positive communication between people with dementia and their primary caregivers and comprises five elements: interactive history-taking, dynamic observational assessment, education about the consequences of dementia on communication, development and use of personalized communication tools, use motivational, and person-centred strategies by the SLT. We conducted a single-group mixed-methods pilot study with five measurements: baseline, directly after intervention, and at 3, 6 and 9 months follow-up. Semi-structured interviews and questionnaires for Experienced Communication in Dementia, quality of life, psychological well-being and caregiver burden were conducted. Process evaluation was performed by interviewing participants, drop-outs, SLTs and other stakeholders., Outcomes & Results: A total of 32 dyads completed the intervention. Repeated measures analyses revealed no significant changes over time. In the interviews, participants reported a positive impact on their feelings, increased communication skills and better coping with the diagnosis. Participants would recommend the intervention to others. Facilitators were timely delivery, personalized content and adequate reimbursement. Barriers were unfamiliarity with Com-mens among referrers, an overburdened caregiver or disrupted family relationships., Conclusions & Implications: This newly developed logopaedic intervention is feasible and has a perceived positive impact on both people with dementia and their caregivers, which is confirmed by a stable pattern over a period of 1 year. Future comparative studies are needed to test the effectiveness of personalized interventions in this patient population., What This Paper Adds: What is already known on the subject? SLTs are experts in the field of communication, but even though communication problems are common between people with dementia and their caregivers, there is a lack of logopaedic guidelines and materials for the direct treatment for this population. Interventions that are available either focus on (professional) caregivers only or aim to enhance cognitive functioning and do not target on joined communication. What this paper adds to the existing knowledge? A newly developed intervention called Com-mens can be provided by trained SLTs and takes an average of six 1-h sessions. The intervention is perceived to be valuable and feasible for people with dementia and their caregivers, by the participants themselves, as well as by healthcare professionals and other stakeholders. What are the potential or actual clinical implications of this work? Dissemination of this intervention will give SLTs skills, tools and materials to provide meaningful care to home-dwelling persons with dementia and their caregivers. Also, persons with dementia and their caregivers will receive education and materials that can help them increase their understanding of communication problems, enhance their communication skills and better cope with the communication problems that result from dementia. We consider the Com-mens intervention to be a valuable addition to the field of speech language therapy and dementia., (© 2022 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

Objective: To investigate the feasibility and usability of an online spasticity monitoring tool amongst people with hereditary spastic paraplegia or chronic stroke receiving botulinum toxin treatment, and their healthcare providers., Methods: Mixed methods cohort study, measuring recruitment success and adherence to the monitoring in 3 rehabilitation institutions. In addition, the System Usability Scale (SUS) and interviews with patients and their healthcare providers were used for quantitative and qualitative analysis, respectively. A deductive directed content analysis was used for qualitative evaluation., Results: Of the 19 persons with hereditary spastic paraplegia and 24 with stroke who enrolled in the study, recruitment success and adherence were higher amongst people with hereditary spastic paraplegia compared with stroke. Usability was found "marginal" by rehabilitation physicians and "good" by patients and physical therapists (SUS scores 69, 76, and 83, respectively). According to all participant groups, online monitoring potentially contributes to spasticity management if it is tailored to the actual needs and capabilities of patients, and if it can easily be integrated into the daily/working routines of all users., Conclusion: Online monitoring of spasticity in people with hereditary spastic paraplegia or stroke receiving treatment with botulinum toxin may be feasible, provided that the monitoring tool is tailored to the needs of all users.

Background and Objectives: Tools to measure self-perceived communication between persons with early-stage dementia and their caregivers are lacking. Therefore, we developed a questionnaire for Experienced Communication in Dementia (ECD) with a patient version (ECD-P) and a caregiver version (ECD-C), which contains items on (a) caregiver competence, (b) social communication, (c) communication difficulties, and (d) experienced emotions. This article describes the feasibility and clinimetric evaluation of this instrument., Research Design and Methods: A prospective observational cohort study was conducted with 57 dyads (community-dwelling person with dementia and primary caregiver). ECD-P, ECD-C, and measures on quality of life, caregiver burden, cognitive functioning, physical functioning, and functional independence were administered. After 2 weeks, the dyads filled out the ECD again. Feasibility (completion time and missing values per item), internal consistency (Cronbach's α), test-retest reliability (intraclass correlation coefficients [ICCs]), and construct validity (hypotheses testing with Spearman's r) were evaluated., Results: Mean completion time was 10 min per questionnaire. ICCs for test-retest reliability ranged from 0.67 to 0.78, except for ECD-P2 (ICC = 0.31). Internal consistency ranged from α = 0.75 to 0.82 for ECD-P1 and all parts of ECD-C, except for ECD-P2 (α = 0.66). Correlation coefficients for convergent validity ranged from r = 0.31 to 0.69 and correlation coefficients for divergent validity were r < 0.20 and statistically insignificant., Discussion and Implications: Pending future research, the ECD, except part ECD-P2, seems to be a promising tool to measure experienced communication between persons with early-stage dementia and their caregivers., (© The Author(s) 2021. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Background: People post-stroke are at risk of not being able to participate in valued activities. It is important that rehabilitation professionals prepare people post-stroke for the transition home and provide needed support when they live at home. Several authors have suggested that members of the broad social network should play an active role in rehabilitation. This includes informing them about the importance of activity (re)engagement post-stroke and learning strategies to provide support. It is not clear when and how the broad social network can best be equipped to provide adequate activity support. This study aimed to explore stroke professionals' perspectives on strategies that establish a social network that supports activity (re)engagement of people post-stroke, when strategies are best implemented, and the factors that influence the implementation of these strategies., Methods: Two focus groups were executed. Content analysis was used to analyze the transcripts of the recorded conversations., Results: Eighteen professionals with various professional backgrounds and roles in treating people post-stroke participated. Strategies to establish a supportive social network included identifying, expanding, informing, and actively engaging network members. Working with the network in the immediate post-stroke phase was regarded as important for improving long-term activity outcomes. Participants expressed that most strategies to equip the social network to support people post-stroke need to take place within community care. However, the participants experienced difficulties in implementing network strategies. Perceived barriers included interprofessional collaboration, professional knowledge, self-efficacy, and financial structures., Conclusions: Strategies to involve the social network of people post-stroke are not fully implemented. Although identifying members of a social network should begin during inpatient rehabilitation, the main part of actively engaging the network will have to take place when the people post-stroke return home. Implementing social network strategies requires a systematic process focusing on collaboration, knowledge, attitude, and skill development., (© 2022. The Author(s).)

Introduction/aims: Oculopharyngeal muscular dystrophy (OPMD) is a late-onset, progressive muscle disease. Quantitative muscle ultrasound (QMUS) assesses structural changes in muscles and is a sensitive biomarker in neuromuscular disorders. Our aim of this study was to determine whether QMUS can detect muscle pathology and can be used as longitudinal imaging biomarker in OPMD., Methods: Genetically confirmed OPMD patients, recruited by their treating physicians or from the national neuromuscular database, were examined twice, 20 months apart, using QMUS of orofacial and limb muscles, and measurements of functional capacity and muscle strength. Absolute echo intensity (AEI) and muscle thickness of all muscles were analyzed and correlated with clinical data., Results: The tongue, deltoid, iliopsoas, rectus femoris, and soleus muscles showed increased AEI at baseline compared with normal values in 43 OPMD patients, with the rectus femoris being most often affected (51%).The AEI and muscle thickness of 9 of 11 muscles correlated significantly with the motor function measure, 10-step stair test, swallowing capacity, dynamometry, Medical Research Council grade, tongue strength, and bite force (r = 0.302 to -0.711). Between baseline and follow-up, deterioration in AEI was found for the temporalis, tongue, and deltoid muscles, and decreased muscle thickness was detected for the temporalis, masseter, digastric, tongue, deltoid, iliopsoas, and soleus muscles (P < .05). No relation was found between the change in AEI and repeat length or disease duration., Discussion: QMUS detected muscle pathology and disease progression in OPMD over 20 months. We conclude that QMUS should be considered as a biomarker in treatment trials., (© 2022 The Authors. Muscle & Nerve published by Wiley Periodicals LLC.)

Purpose: Chronic spasticity poses a major burden on patients after stroke. Intramuscular botulinum toxin injections constitute an important part of the treatment for patients suffering from troublesome focal spasticity. This study explores the experienced consequences of chronic spasticity amongst patients after stroke regarding physical impairments and activities, the experienced effects of botulinum toxin treatment on these domains, and whether current spasticity management addresses patients' needs., Materials and Methods: Fourteen participants with chronic spasticity after stroke who were treated with cyclical botulinum toxin injections in the upper and/or lower extremity muscles were interviewed. Inductive thematic analysis generated representative themes., Results: Analyses of the interviews revealed three themes: (1) spasticity-related impairments and activity limitations; (2) fluctuations in spasticity related to botulinum toxin; (3) need for professional support and feedback. Besides motor impairments, participants experienced activity limitations in many domains of everyday life, with considerable day-to-day fluctuations. Moreover, treatment with botulinum toxin led to cyclical fluctuations in spasticity-related symptoms, which differed across participants. The participants called for shared responsibility for treatment, particularly regarding optimising the timing of injections., Conclusion: Incorporating patient-relevant outcomes into the current assessment of spasticity and monitoring these outcomes may improve spasticity management, particularly regarding the timing of botulinum toxin injections.Implications for rehabilitationBecause chronic spasticity after stroke impacts on almost all domains of everyday life, professionals should identify and target the most relevant problems in each individual patient.Monitoring patient-reported outcomes may help patients and professionals to get insight in the fluctuations of spasticity-related symptoms and may help to evaluate the effects of botulinum toxin injections from the patient's perspective.Patient education and providing insight in the fluctuations of spasticity-related symptoms may support self-management and shared decision-making in spasticity management.

Background and Objectives: Oculopharyngeal muscular dystrophy (OPMD) is a late-onset, progressive muscle disease. Disease progression is known to be slow, but details on the natural history remain unknown. We aimed to examine the natural history of OPMD in a large nationwide cohort to determine clinical outcome measures that capture disease progression and can be used in future clinical trials., Methods: Patients invited by their treating physicians or identified from the national neuromuscular database and invited family members were examined twice 20 months apart with fixed dynamometry; Medical Research Council (MRC) grading; maximum bite force and isometric tongue strength; Motor Function Measure (MFM); 10-step stair test; maximum swallowing, chewing, and speech tasks; and quality of life assessments., Results: Disease progression was captured by 8 of 18 measures over 20 months in 43 patients with genetically confirmed OPMD. The largest deterioration was seen in deltoid muscle strength (-27% [range -17% to -37%]), followed by the quadriceps (-14% [range -6 to -23%]), iliopsoas (-12.2%), tongue (-9.9%), and MRC sum score (-2.5%). The 10-step stair test (-12.5%), MFM part D1 (-7.1%), and maximum repetition rate of /pa/ (-5.3%) showed a significant decrease as well (all p < 0.05). The Physical Functioning domain of the Short Form-36 Health Survey significantly deteriorated ( p = 0.044). No relationship was found between disease progression and genotype or disease duration ( p > 0.05)., Discussion: Despite the slow disease progression of OPMD, this study showed that several outcome measures detected progression within 20 months. Deltoid muscle strength, measured by fixed dynamometry, showed the greatest decline. These longitudinal data provide clinical outcome measures that can be used as biomarkers in future clinical trials., (Copyright © 2021 The Author(s). Published by Wolters Kluwer Health, Inc. on behalf of the American Academy of Neurology.)

Background: We aimed to identify healthcare needs, expectations, utilization, and the experienced treatment effects in a population of Dutch patients with hereditary spastic paraplegia (HSP)., Methods: We distributed an online questionnaire among 194 adult persons with HSP in the Netherlands, of which 166 returned a fully completed version. After applying predefined exclusion criteria, 109 questionnaires from persons with pure HSP were analysed., Results: Healthcare needs and expectations were primarily focused on the relief of muscle stiffness and reduction of balance and gait impairments (65-80%), but many participants also expressed needs regarding relief of non-motor symptoms (e.g. pain, fatigue), emotional problems, impaired sleep and self-care capacity, and participation problems (> 60%). Remarkably, despite these frequent needs, relatively few participants (< 33%) expected to be able to improve in these additional domains. Rehabilitation physicians and physiotherapists were more frequently consulted than neurologists and occupational therapists, respectively. Physiotherapy was the most often proposed non-pharmacological intervention (85%), followed by orthopedic footwear (55%) and splints (28%). Approximately one third of the participants was never offered any pharmacological (spasmolytic) treatment. Spasmolytic oral drugs, injections, and intrathecal baclofen were given to 41%, 26%, and 5% of the participants, respectively. Independent of the type of pharmacological intervention, 35-46% of these participants experienced decreased spastiticy and improved general fitness. Other experienced effects differed per type of intervention., Conclusions: Based on this web-based survey in the Netherlands, there seems to be ample room for improvement to meet and attune the healthcare needs and expectations of people with HSP concerning both their motor and non-motor symptoms and functional limitations. In addition, the provision of adequate information about non-pharmacological and pharmacological interventions seems to be insufficient for many patients to allow shared decision making. These conclusions warrant a more pro-active attitude of healthcare providers as well as an interdisciplinary approach for a substantial proportion of the HSP population, also involving professionals with a primary occupational and/or psychosocial orientation.

Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the "experienced communication" of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia-caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers' own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.

Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients' needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom. Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed. Results: Four themes were identified which can be reflected by the phrases: (1) 'I stumble', (2) 'I struggle', (3) 'I feel ashamed', and (4) 'I need support'. Balance and gait problems led to limitations in domestic activities, employment, and recreation. 'Stumbling' also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided. Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.Implications for rehabilitationAccording to patients with hereditary spastic paraplegia, interventions for spasticity should not only be aimed at reducing motor impairments, but also on reducing pain and fatigue, improving nighttime rest and general well-being, and optimizing the performance of relevant personal activities.Medical, role and emotional management in patients with hereditary spastic paraplegia can be improved only when individual needs are identified and monitored over the course of the disease.Besides assessment of bodily functions and physical capacities, systematic evaluation of patient-reported outcomes will help both patients and professionals to monitor the functional impact of disease progression and to evaluate the effects of interventions aimed at retarding this progression.

Background: The Observable Movement Quality (OMQ) Scale measures generic movement quality. Each item of the OMQ Scale focuses on a different element; together, the 15 items assess the whole construct of movement quality., Objective: The aim of this study was to determine the construct validity of the OMQ Scale using 7 hypotheses defined to conform to the Consensus-Based Standards for the Selection of Health Measurement Instruments., Design: This was an exploratory validation study., Methods: A pediatric physical therapist assessed motor performance in 101 children using an age-specific motor test and the OMQ Scale. The direction, magnitude, and rationale for 7 hypotheses, which concerned relationships (n = 2), probability of low scores (n = 4), and difference between diagnosis subgroups (n = 1), were defined., Results: The results confirmed 6 of the 7 hypotheses, indicating sufficient construct validity. Significant positive relationships were found between OMQ Scale total scores and the severity of motor disabilities (r = 0.72) and z scores on motor tests (r = 0.60). Probabilities for low scores on OMQ Scale items-exceeding the chi-square critical value-were confirmed for children diagnosed with spasticity, psychomotor retardation, mitochondrial diseases, and ataxia; however, probabilities for low OMQ Scale item scores on strength regulation in children with ataxia were not confirmed. OMQ Scale total scores for children who were not ambulatory because of neurological conditions were significantly different from those for children who were not ambulatory because of fatigue (r = 0.66)., Limitations: The sample of children was based on theoretical assumptions about relevant variations in clinical representations; on the basis of the results, it appears that children with low strength regulation were underrepresented., Conclusion: The confirmation of nearly all hypotheses supported the validity of the OMQ Scale for measuring movement quality in clinical practice in addition to standardized age-adequate motor performance tests., (© 2019 American Physical Therapy Association.)

Background: Oculopharyngeal muscular dystrophy (OPMD) is a late onset progressive neuromuscular disorder. Although dysphagia is a pivotal sign in OPMD it is still not completely understood., Objective: The aim of this study was to systematically investigate oropharyngeal functioning in a large OPMD population., Methods: Forty-eight genetically confirmed OPMD patients completed questionnaires, performed clinical tests on swallowing, chewing, speaking, tongue strength and bite force, and underwent videofluoroscopy of swallowing. Descriptive statistics was used for all outcomes and logistic regression to investigate predictors of abnormal swallowing., Results: Eighty-two percent reported difficulties with swallowing, 27% with chewing and 67% with speaking. Patients performed significantly worse on all oropharyngeal tests compared to age-matched controls except for bite force. Also asymptomatic carriers performed worse than controls: on chewing time, swallowing speed and articulation rate. During videofluoroscopy, all patients (except one asymptomatic) had abnormal residue and 19% aspirated. Independent predictors of abnormal residue were reduced swallowing capacity for thin liquids (OR 10 mL = 0.93; 20 mL = 0.95) and reduced tongue strength for thick liquids (OR 10 mL = 0.95); 20 mL = 0.90). Aspiration of thin liquids was predicted by disease duration (OR = 1.11) and post-swallow residue with 20 mL (OR = 4.03)., Conclusion: Next to pharyngeal dysphagia, chewing and speaking are also frequently affected in OPMD patients, even in asymptomatic carriers. Residue after swallowing is a very early sign, while aspiration is a later sign in OPMD. For clinical follow-up monitoring of subjective complaints, swallowing capacity and tongue strength seems relevant.

Background: Dysphagia and dysarthria are frequently described in pediatric neuromuscular diseases (pNMD). The consequences can be substantial: failure to thrive, malnutrition, aspiration pneumonia, or communication problems. Early detection and identification of risk factors and etiology support preventing complications and morbidity, including impact on quality of life. Information about the prevalence of dysphagia and dysarthria in pNMD is scarce., Objective: To describe the pooled prevalence of dysphagia and dysarthria in pNMD in the Netherlands. In addition, we describe the prevalence of dysphagia and dysarthria each, and the prevalence of chewing (oral) and swallowing problems per diagnostic group, based on their anatomic origin., Methods: Data were collected from 295 children (mean age 11;0 years, range 2;6-18;0) with pNMD in 12 hospitals and rehabilitation centers in the Netherlands. A speech language therapist established whether dysphagia and dysarthria were present or not., Results: In almost all the 14 diagnostic groups of pNMD, dysphagia and dysarthria were present. Pooled overall prevalence of dysphagia and dysarthria was 47.2% and 31.5%, respectively. Of 114 children with dysphagia, 90.0% had chewing problems, 43.0% showed swallowing problems and 33.3% showed both chewing and swallowing problems., Conclusions: The overall pooled prevalence of dysphagia and dysarthria was high in the population of pNMD. It can be argued that periodic monitoring of dysphagia and dysarthria and early referral to a speech language therapist should be a necessity from the start of the diagnosis in the whole pNMD population.

Aim: The Observable Movement Quality (OMQ) scale measures generic movement quality and is used alongside standardized age-adequate motor performance tests. The scale consists of 15 items, each focusing on a different aspect; together, the entire construct of movement quality is assessed. This study aimed to determine interrater and intrarater reliability, and responsiveness of the OMQ scale., Methods: A prospective intervention study with pre-post design in pediatric physical therapy practices. For interrater reliability, 3 physical therapists observed video-recorded motor assessments of 30 children with mild to moderate motor impairments -aged 4 to 12 years-using the OMQ scale. One therapist scored baseline assessment a second time for intrarater reliability, and to calculate smallest detectable change (SDC). Responsiveness ( n  = 28) was tested by comparing outcomes before and after intervention., Results: Interrater reliability was moderate to good (ICC 2,1 : 0.79); intrarater reliability was high (ICC 2,1 : 0.97). Responsiveness results revealed an SDC of 2.4 and a minimal important change of 2.5; indicating sufficient validity in differentiating groups of children showing improved versus unchanged movement quality., Conclusion: The OMQ scale is reliable and responsive to change when used to assess movement quality in clinical practice for children with mild to moderate motor impairments, aged 4-12 year.

Objective: The impact of difficulties with eating and drinking in adolescents and young adults with cerebral palsy is unknown. The purpose of this study is to find out which difficulties adolescents and young adults with cerebral palsy experience with eating and drinking in daily life and how they deal with these difficulties. The study also explores how they think about themselves with respect to eating and what does or does not help regarding social participation. Method: We collected the data from ten participants with spastic cerebral palsy (aged 15-23 years) living in the Netherlands. We used a qualitative study design with a conventional content analysis. Semi-structured in-depth interviews were used to identify meaningful factors related to eating and drinking difficulties. We coded relevant phrases from each interview and clustered and synthesized them into categories. Result: We derived four categories from the transcripts: (I) perceived eating and drinking difficulties (e.g., not managing to eat all food textures and/or choking); (II) challenges in physical and social context (e.g., accessibility of restaurants, menu supply, and/or needing assistance or not); (III) dealing with eating and drinking difficulties (e.g., adaptation, food avoidance, and/or giving up); (IV) Negative feelings about their eating and drinking (e.g., shame, frustration, fear for choking, and/or concerns about the future). One striking finding was that most participants had not recently received either monitoring or intervention for their feeding skills. Conclusion: This study shows that adolescents and young adults with cerebral palsy experience many restrictions in eating and drinking situations leading to negative feelings and lower participation levels, while little attention is directed towards these difficulties. Regular multidisciplinary rehabilitation programs should include evaluation, advice, and intervention regarding eating and drinking ability in order to increase social participation and self-management. Implications for Rehabilitation Adolescents and young adults with cerebral palsy experience difficulties with eating, drinking, and swallowing, and they encounter difficulties in participating in mealtimes with family and friends. Although adolescents and young adults with cerebral palsy rated their eating and drinking abilities as reasonable, they reported feelings of shame, frustration, fear, distress, and concerns for the future or unknown environments. Regular multidisciplinary involvement with eating and drinking is needed for purposes of evaluation, advice, and intervention throughout the life course, adjusted to living conditions and the latest evidence. Adolescents and young adults with cerebral palsy showed limited initiative in asking for personal assistance in eating and drinking activities.

Background: Stroke has a major impact on survivors and their social environment. Care delivery is advocated to become more client-centered and home-based because of their positive impact on client outcomes. The objective of this study was to explore professionals' perspectives on the provision of Home-Based Stroke Rehabilitation (HBSR) in the Netherlands and on the barriers and facilitators influencing the implementation of HBSR in daily practice., Methods: Semi-structured focus groups were conducted to explore the perspectives of health and social care professionals involved in stroke rehabilitation. Directed content analysis was performed to analyze the transcripts of recorded conversations., Results: Fourteen professionals participated in focus groups (n = 12) or, if unable to attend, an interview (n = 2). Participants varied in professional backgrounds and roles in treating Dutch clients post stroke. Barriers and facilitators influencing the implementation of HBSR in daily practice were identified in relation to: the innovation, the user, the organization and the socio-political context. Participants reported that HBSR can be efficient and effective to most clients because it facilitates client- and caregiver-centered rehabilitation within the clients' own environment. However, barriers in implementing HBSR were perceived in a lack of (structured) inter-professional collaboration and the transparency of expertise of primary care professionals. Also, the current financial structures for HBSR in the Netherlands are viewed as inappropriate., Discussion: In line with previous studies, we found that HBSR is recognized by professionals as a promising alternative to institution-based rehabilitation for clients with sufficient capabilities (e.g. their own health and informal support)., Conclusion: Multiple factors influencing the implementation of HBSR were identified. Our study suggests that, in order to implement HBSR in daily practice, region specific implementation strategies need to be developed. We recommend developing strategies concerning: organized and coordinated inter-professional collaboration, transparency of the expertise of primary care professionals, and the financial structures of HBSR., Competing Interests: The authors have declared that no competing interests exist.

Purpose: This qualitative study explored how stroke survivors' spouses described their own self-management, their partner's self-management post-stroke and how they had been supported in developing self-management., Method: Focus group interviews were conducted with 33 spouses of stroke survivors 34-79 years of age. A constant comparative framework was used for the analysis., Result: Stroke also affected the spouses, gave changes in their relationships and challenged in being a caregiver beside being partner. They felt burdened, lonely, sad, and guilty. To manage themselves, many participants created time for themselves. For most spouses, self-management was connoted with co-management because they perceived their partners were not able to manage themselves completely post-stroke. They often felt lost after their partners came home and reported that they learned how to coach their partners post-stroke by trial and error, without much professional support. Moreover, many spouses experienced informal peer support as helpful., Conclusion: Spouses of stroke survivors should be involved as soon as possible in stroke-rehabilitation and continue at home post-discharge. In addition to enhancing the spouses' skills in caregiving and supporting self-management, stroke survivors' spouses also need support in their own emotional and role management. Moreover, peers can play a role in rehabilitation post-stroke. Implications for Rehabilitation Spouses of stroke survivors should be considered as full participants of stroke-self-management programs to enhance their skills in caregiving and supporting self-management. Stroke survivors' spouses need support in their own emotional and role management. Peer support can play a role in rehabilitation post-stroke for stroke survivors as well as their spouses.

Purpose: The authors investigated the interrater reliability, the standard deviation of the random measurement error, and the limits of agreement (LoA) of the Observable Movement Quality (OMQ) scale in children. Movement quality is important in the recognition of motor problems, and the OMQ scale, a questionnaire used by paediatric physical therapists, has been developed for use with an age-specific motor test to observe movement quality and score relative to what is expected for a child's age. Method: Paediatric physical therapists ( n =28; 2 men, 26 women) observed video-recorded assessments of age-related motor tests in children ( n =9) aged 6 months to 6 years and filled in the OMQ scale (possible score range 15-75 points). For our analyses, we used linear mixed models without fixed effects. Results: The interrater reliability was moderate (intra-class correlation coefficient [ICC 2,1 ]: 0.67, 95% CI: 0.47, 0.88); neither work setting nor work experience exerted any influence on it. The standard deviation of the random measurement error was 5.7, and the LoA was 31.5. Item agreement was good (proportion of observed agreement [P o ] total 0.82-0.99). Conclusion: The OMQ scale showed moderate interrater reliability when being used by therapists who were unfamiliar with the questionnaire and who had received only 2 hours of training. Feedback from the participants suggested a need for more comprehensive training in using the OMQ scale in clinical practice.

Objective: To identify the essential elements of a newly developed, practice-based logopaedic intervention, which focuses on communication between persons with dementia (PwDs) and their caregivers., Methods: The intervention of 6 one-hour sessions was conducted and evaluated with 4 PwD-caregiver dyads. Eighteen therapy sessions were video recorded and semi-structured interviews with all dyads and an interview with the speech-language therapist (SLT) were audio recorded. Framework analysis and triangulation were used to analyse the data., Results: Five elements were found, which were systematically applied in the treatment of all dyads: interactive history taking, dynamic assessment, education about consequences of dementia for communicative effectiveness, development and use of two communication tools, and specific didactic strategies of the SLT. Regarding the outcome of the treatment, the dyads valued the focus on the interaction between PwD and caregiver, the usefulness of the received pieces of advice, and the empowering attitude of the SLT, which improved their self-confidence. The SLT added another element for an efficient approach: the ability to deliver treatment in people's home environment., Conclusion: A short pragmatic but consistent approach for communication problems caused by dementia seems promising for improving daily communication and reducing stress and frustration. Further research will explore the feasibility and efficacy of this approach., (© 2018 S. Karger AG, Basel.)

Background: Nursing home-acquired pneumonia (NHAP) is a common infection among nursing home residents. There is also a high prevalence of dysphagia in nursing home residents and they suffer more often from comorbidity and multimorbidity. This puts nursing home residents at higher risk of (mortality from) NHAP. Therefore it is important to gain more insight into the incidence of NHAP and the associated medical conditions in nursing home residents with dysphagia., Objective: To investigate possible associations between NHAP and dysphagia in nursing home residents and to search for a medical risk profile for NHAP., Design: A retrospective cross-sectional study., Setting: Three nursing homes in The Netherlands., Participants: 416 electronic medical files of nursing home residents aged 65 or older living in 3 nursing homes., Methods: Data about age, gender, diagnosis of dysphagia and/or pneumonia, medical diagnosis and possible cause of death of the nursing home residents were extracted from electronic medical files., Results: The data of 373 electronic medical files were analyzed. A significant difference in the prevalence of dysphagia was found between the nursing homes (p < 0.001). The incidence of NHAP was 5-12% in the participating nursing homes. Statistically significant higher incidence of NHAP was found in residents with dysphagia (p = 0.046). Residents with dysphagia had statistically significantly more diseases compared to residents without dysphagia (p = 0.001). Logistic regression analyses revealed no statistically significant associations between NHAP and the number of diseases and the ICD-10 diseases., Conclusions: Dysphagia was found to be a risk factor for NHAP. Awareness of the signs of dysphagia by nurses and other care providers is important for early recognition and management of dysphagia and prevention of NHAP., (Copyright © 2017 The Author(s). Published by Elsevier Inc. All rights reserved.)

Background: Dysphagia and potential respiratory pathogens in the oral biofilm are risk factors for aspiration pneumonia in nursing home residents. The aim of the study was to examine if the daily application of 0.05% chlorhexidine oral rinse solution is effective in reducing the incidence of aspiration pneumonia in nursing home residents with dysphagia. Associations between background variables (age, gender, dysphagia severity, care dependency, medication use, number of medical diagnoses, teeth and dental implants, and wearing removable dentures) and the incidence of aspiration pneumonia were also examined., Methods: This study is a multicenter study in which for 1 year participants with dysphagia in the intervention group received the usual oral hygiene care with the addition of a 0.05% chlorhexidine oral rinse solution, whereas participants in the control group received only oral hygiene care., Results: Data of 103 participants in 17 nursing homes were analyzed. Survival analysis showed no significant difference in the incidence of pneumonia between both groups (Cox regression, HR = 0.800; 95% CI [0.368-1.737], p = 0.572). Cox regression analysis for Functional Oral Intake Scale (FOIS)-level showed a significant risk of the incidence of pneumonia (HR = 0.804; 95% CI [0.656-0.986], p = 0.036). After adjustment for Group and FOIS-level, Cox multivariate proportional hazard regression analysis showed that the variables age, gender, Care-dependency Scale-score (CDS) number of diseases, medication use, number of teeth, and the presence of dental implants or removable dentures were not significantly associated with the incidence of pneumonia., Conclusions: Chlorhexidine oral rinse solution 0.05% as an adjunctive intervention in daily oral hygiene care was not found to reduce incidence of aspiration pneumonia. The requested number of participants to achieve sufficient power was not established and high drop-out rate and non-structural compliance was present. The power was considered to be sufficient to analyze the associations between the background variables and the incidence of pneumonia in the included nursing home residents with dysphagia. Dysphagia was found to be a risk factor for aspiration pneumonia., Trial Registration: Registration in The Netherlands National Trial Register: TC = 3515. Approval for the study was obtained from the Medical Ethical Committee of the Radboud University Medical Center (NL. nr:41,990.091.12).

Objective: In the absence of an adequate dysarthria assessment in the Netherlands, we developed the Radboud Dysarthria Assessment (RDA). This article describes its development and clinimetric evaluation., Patients and Methods: Forty-three patients were assessed with the RDA. The recording forms were subjected to exploratory factor analysis and estimation of internal consistency. The self-evaluation questionnaire was tested for internal consistency and the severity scale for intra- and inter-rater reliability. Construct validity of the severity scale and questionnaire was determined by relating them to the Speech Handicap Index (SHI), Dutch sentence intelligibility assessment (NSVO-Z), and category fluency task., Results: Exploratory factor analysis extracted 4 factors (articulation, resonance, phonation, respiration/prosody) yielding an explained variance of 70.3%. Each factor showed good internal consistency (Cronbach's α: 0.89-0.91). The self-evaluation questionnaire showed excellent internal consistency (Cronbach's α: 0.90). Intra-class correlation coefficients of the severity scale (0.85-0.86) showed good reliability. The severity scores and self-evaluation questionnaire correlated substantially to strongly with the SHI (rs = 0.40 and 0.80) and substantially with the NSVO-Z (rs = -0.65 and -0.52)., Conclusions: The RDA is a valid and reliable tool, but further investigation is needed to demonstrate whether this instrument can successfully support speech-language therapists in correctly diagnosing the type of dysarthria., (© 2018 S. Karger AG, Basel.)

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Introduction: The progressive ageing of the population has generated significant interest in various areas, particularly Cognitive Impairment (CI). It is necessary to know the specific characteristics of people with cognitive development to establish the basis for the intervention. Aim: To understand the relationship between the cognitive deterioration process and language characteristics, aiming to determine whether linguistic alteration could be considered a symptom of cognitive deterioration. Materials and Methods: This study employed a cross-sectional design involving two groups: 17 individuals aged over 70 years, consisting of eight with CI and nine without CI. Participants were assessed using the Mini-Mental State Examination (MMSE). Language abilities were evaluated using the Boston Naming Test and the Verbal Fluency Test in separate individual sessions. Data analysis was conducted using the Statistical Package for Social Sciences (SPSS) program. Results: The results indicated that individuals with CI exhibited poorer performance in language tests, particularly in areas related to productive and comprehensive lexical and semantic development. These differences were statistically significant across all assessed domains (p-value<0.001). Conclusion: CI is accompanied by significant impairment in language skills, which could be considered an indicator of cognitive decline. Therefore, specific interventions targeting language abilities are warranted throughout the progression of CI. [ABSTRACT FROM AUTHOR]

The oral and suprahyoid muscles are responsible for movements of swallowing. Our study aimed to determine the reproducibility of static and dynamic measurements of these muscles using bedside ultrasound equipment. Forty healthy participants were recruited prospectively. Primary outcomes were evaluation of mass measurements of the anterior bellies of the digastric, mylohyoid, geniohyoid and tongue in B-mode ultrasound. Secondary outcomes were evaluation of geniohyoid muscle layer thickness and function using M-mode. Muscle mass measurements demonstrated little within-participant variability. Coefficient of Variance (CoV) across muscles were: anterior belly digastric (5.0%), mylohyoid (8.7%), geniohyoid (5.0%) and tongue (3.2%). A relationship between sex (r2 = 0.131 p = 0.022) was demonstrated for the geniohyoid muscle, with males having higher transverse Cross Sectional Area (CSA) (14.3 ± 3.6 mm vs. 11.9 ± 2.5 mm, p = 0.002). Tongue size was correlated with weight (r2 = 0.356, p = 0.001), height (r2 = 0.156, p = 0.012) and sex (r2 = 0.196, p = 0.004). Resting thickness of the geniohyoid muscle layer changed with increasing bolus sizes (f = 3.898, p = 0.026). Velocity increased with bolus size (p = < 0.001, F = 8.974). However swallow time and slope distance did not, potentially influenced by higher coefficients of variation. Oral and suprahyoid muscle mass are easily assessed using bedside ultrasound. Ultrasound may provide new information about muscle mass and function during swallowing. [ABSTRACT FROM AUTHOR]

Introduction: People with dementia and their carers experience social stigma and often refrain from social participation. Significant improvement might be achieved by creating Dementia Friendly communities (DFCs) for which dementia friendly initiatives (DFIs) are needed. DFIs are developed by a variation of stakeholders. However, people with dementia and their carers are often unrepresented herein. This study aims to get insight into the perspectives of stakeholders (e.g., health- and social care professionals, volunteers, people with dementia and their carers) about the involvement of people with dementia and their carers during the development and sustainment of DFIs. Methods: Descriptive qualitative study, using a co-research design with a carer as co-researcher. Nineteen semi-structured interviews with stakeholders, including people with dementia and their carers, were performed. Inductive content analysis took place using Atlas Ti. Results: Four themes were found: 1) the involvement of people with dementia and their carers is important for both people with dementia and their carers and other stakeholders; 2) personal character traits, life histories, and associated emotions evoke the need for involvement; 3) involvement requires an open, responsive stance and building relationships; and 4) the estimation of one's own and others' capacities influences perspectives on involvement. As such, practice what you preach means actively adopting an open, responsive approach and acknowledging the unique abilities and backgrounds of people with dementia and their carers. It emphasizes the importance of actually living by the values you advocate for. Conclusion: Central to perspectives on involving people with dementia and their carers is the emphasis on working relationally, differing from service-led and prestructured patient and public involvement (PPI). Working relationally calls for organizational shifts aligned with a rights-based perspective to avoid tokenism, and promotion of user-led organizations with genuine partnerships. Creative methods, problem-solving, and communication skills are essential for the development and sustainment of inclusive, supportive, person-centered DFIs. Future studies should explore the long-term impact of the involvement and working relationally on the well-being of people with dementia and their carers. [ABSTRACT FROM AUTHOR]

Background: The caregiver contribution to self-care plays an important role in improving the health outcomes of chronic patients, which needs urgent attention. However, it has been hindered by the lack of a tailored instrument that assesses the caregiver contribution to self-care of stroke. Objectives: To test the psychometric characteristics of the caregiver contribution to self-care of stroke Inventory (CC-SCSI) in health care practice. Methods: Participants were recruited in Henan Province from March 2021 to October 2022, utilizing a multicenter stratified sampling approach. A 23-item self-report CC-SCSI with 3 separate scales measuring caregiver contribution to self-care maintenance of stroke, caregiver contribution to self-care monitoring of stroke and caregiver contribution to self-care management of stroke was tested for validity through discriminant validity, confirmatory factor analysis, concurrent validity and convergent validity. The reliability was tested by Cronbach's α coefficient and test-retest reliability. Qualitative data were analysed using thematic analysis. A STROBE checklist was used. Results: The three scales of the CC-SCSI exhibited good discriminant validity. Confirmatory factor analysis supported the three-factor structure of the Caregiver Contribution to Stroke Self-Care Maintenance and Management scales and the one-factor structure of the Caregiver Contribution to Stroke Self-Care Monitoring scale. The moderate correlation between the CC-SCSI and the Self-Care of Stroke Inventory indicated acceptable concurrent validity. The moderate correlation between the CC-SCSI and the Caregiver Contribution to Self-Care of Chronic Illness Inventory indicated acceptable convergent validity. Cronbach's αs for the Caregiver Contribution to Self-Care Maintenance, Self-Care Monitoring, and Self-Care Management scales ranged from 0.876 to 0.974. Test-retest reliability showed average ICC values ranging from 0.828 to 0.903 (P < 0.001). Conclusions: The 23-item CC-SCSI presents good psychometric properties and could be used to explore the caregiver contribution to stroke self-care in health care practice and research. [ABSTRACT FROM AUTHOR]

To determine the global prevalence of oropharyngeal dysphagia (OD) in adults. Six electronic databases (Embase, LILACS, LIVIVO, PubMed/Medline, Scopus, and Web of Science) were searched, in addition to gray literature (ASHA, Google Scholar, ProQuest Dissertation, and Theses). A random-effects model for meta-analysis of proportions was conducted, and heterogeneity was evaluated according to the moderator variable through subgroup analysis and meta-regression. The risk of bias was assessed using the Joanna Briggs Institute Critical Appraisal Checklist and the certainty of the evidence was assessed using the GRADE tool. Thirty papers were included for qualitative and quantitative synthesis. The combined prevalence estimate was 60% [CI 95% = 50%–70%; I2 = 95%], accounting for different baseline conditions. However, the wide variation that exists between the different baseline conditions (underlying disease or risk factor) tended to overestimate this prevalence when considering the general population. Only one study evaluated healthy individuals, which showed a prevalence of 31% [CI95% = 27%–36%]. The risk of bias was considered low for all studies. None of the variables were considered predictors for the observed variance between the effect sizes of the included studies. For the prevalence of OD, the GRADE rating was considered very low. Despite the high prevalence observed, with over half of the individuals affected, the evidence regarding this outcome remains uncertain due to an overestimation of the generated estimates caused by the baseline condition of the sample. [ABSTRACT FROM AUTHOR]

The lack of patient and public involvement in oropharyngeal dysphagia (OD) intervention studies in Parkinson's disease (PD) can bias the choice of outcomes to be measured in these studies. This study aimed to obtain perspectives of individuals living with OD in PD and family members/caregivers on OD intervention outcomes that are important to them. This is part of a larger Core Outcome Set project. A mixed methods study with an international online cross-sectional survey and subsequent focus groups involving people with OD in PD and family members/caregivers was conducted. Survey results were analyzed using descriptive and inferential statistics. Intervention outcomes rated most important, significantly different, inconclusive, or identified as missing in the survey were clarified in follow-up focus groups with seven previous survey participants. Focus group data were audio recorded, transcribed verbatim and analyzed following inductive and deductive content analysis using NVivo. Twelve outcomes were rated as important by ≥ 80% of the 62 survey participants. The most important outcomes were penetration/aspiration and laryngeal sensation. Fear of choking was added as an important but missing intervention outcome. In the focus groups, findings from the survey were validated. Four content categories with eleven sub-categories were identified. OD intervention outcome priorities by people with OD in PD and family members/caregivers show only partial agreement with outcomes measured in published intervention studies on OD in PD. This highlights the importance of stakeholder involvement in the design and implementation of these studies to make findings relevant to all., Competing Interests: Declarations. Competing Interests: JH, LM, MWo, GB and MWa declare no competing interests that are relevant to the content of this article. TW has received honoraria from BIAL, Abbvie, Desitin, Zambon, Pfizer, Britannia, Esteve and Licher, consultancies from Desitin, BIAL, Stadapharm and Phagenesis, and funding from Abbvie and EVER Pharma. Ethical Approval: Ethical approval was obtained from Research Ethics Committee, School of Linguistic, Speech and Communication Sciences, Trinity College Dublin for the online survey on 08 December 2022 [MT9] and the focus groups on 15 May 2023 [HT27]. Informed Consent: Completing the online survey was taken as consent. Written and verbal informed consent was obtained prior to the focus groups from the participants., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Objective: Individuals diagnosed with Spinal Muscular Atrophy (SMA), particularly those presenting with the most severe phenotypes, have long contended with significant swallowing dysfunction. The recent emergence of efficacious advanced therapy has fundamentally altered the landscape of SMA management. By encompassing both the pre and post gene-based therapy eras within our analysis, we endeavour to elucidate the potential impact of these novel therapeutic interventions on this function., Methods: Following the established methodology outlined by the Joanna Briggs Institute, a scoping review was conducted. This review encompassed relevant literature published up to March 2024. Two electronic databases were searched, with additional studies identified by reviewing reference lists of pertinent articles. The search strategy employed a combination of keywords including "spinal muscular atrophy", "SMA", "swallowing", "feeding", and "nutrition". Articles were initially screened based on title and abstract, followed by a full-text review of eligible studies published in peer-reviewed English language journals., Results: The initial database search resulted in 462 articles, from which 23 studies were ultimately selected for analysis. Pre gene-based therapy studies revealed swallowing dysfunction as a prominent feature. Patients frequently reported challenges with chewing, choking on solids and liquids, and abnormal tongue movements during eating. Early dysphagia research relied on subjective measures (questionnaires, scales). objective measures like video fluoroscopic (VFSS) were rare. After gene-based therapies (GBTs), VFSS became the dominant, more objective method. Studies investigating the post-gene therapy era suggest potential clinical benefits, with trends towards improvement or stabilization of swallowing function., Conclusion: Pre gene-based therapy studies revealed widespread swallowing dysfunction in SMA. Conversely, the post-treatment era suggests potential improvement. Future research should prioritize identifying optimal therapies for individual swallowing function and develop validated assessments to optimize SMA management., Competing Interests: Declarations. Ethical approval: Not applicable since no participants were recruited during the execution of this study. Consent for publication: This manuscript has been approved for publication by all authors. Human and animal rights: This article is based on previously conducted studies and does not contain any new studies with human participants or animals performed by any of the authors. Conflict of interest: The authors declare that they have no conflict of interest., (© 2024. The Author(s).)

Feeding/swallowing and airway protection are complex functions, essential for survival, and continue to evolve throughout the lifetime. Medical and surgical advances across the globe have improved the long-term survival of medically complex children at the cost of increasing comorbidities, including dysfunctional swallowing (dysphagia). Dysphagia is prominent in children with histories of preterm birth, neurologic and neuromuscular diagnoses, developmental delays, and aerodigestive disorders; and is associated with medical, health, and neurodevelopmental problems; and long-term socioeconomic, caregiver, health system, and social burdens. Despite these survival and population trends, data on global prevalence of childhood dysphagia and associated burdens are limited, and practice variations are common. This article reviews current global population and resource-dependent influences on current trends for children with dysphagia, disparities in the availability and access to specialized multidisciplinary care, and potential impacts on burdens. A patient example will illustrate some questions to be considered and decision-making options in relation to age and development, availability and accessibility to resources, as well as diverse cultures and family values. Precise recognition of feeding/swallowing disorders and follow-up intervention are enhanced by awareness and knowledge of global disparities in resources. Initiatives are needed, which address geographic and economic barriers to providing optimal care to children with dysphagia., Competing Interests: Declarations. Conflict of interest: MAL-G, JCA, DF, and DSL have no relevant financial interests to disclose for completion of this manuscript. SRJ was supported in part by R01 DK 122171, R01 DK 136762, and The Nationwide Foundation Endowed Chair Grant. None of the authors have conflicts of interest to declare., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Oropharyngeal dysphagia (OD) commonly occurs in neuromuscular diseases (NMD). Appropriate management involves early detection, clinical evaluation, and tailored follow-up to minimize complications. Various assessment tools exist, including the Sydney Swallow Questionnaire (SSQ), a patient-reported outcome measure for assessing OD severity in adult patients. This paper proposes utilizing an innovative risk matrix (OD-Risk-Matrix) to enhance SSQ interpretation. This matrix categorizes OD risk for each SSQ question, offering valuable assistance to clinicians., Methods: This study analyzes SSQ results from a cohort of individuals with NMD (n = 57). Patients filled in the SSQ during outpatient visits at our neuromuscular center. Subsequently, SSQ scores were grouped by NMD conditions and interpreted using the OD-Risk-Matrix categorizing each question's risk as low, moderate, or high. This matrix is based on the SSQ results by categorizing the risk of OD for each question, as well as the likelihood of occurrence of OD., Key Results: In light of the OD-Risk-Matrix, the interpretation of SSQ scores revealed various risk categories associated with each question, while also highlighting distinct OD characteristics and discrepancies among the different NMDs., Conclusion and Inferences: In conclusion, the OD-Risk-Matrix offers a framework for interpreting the SSQ, revealing variations in the risks of OD among different questions in patients with NMD. This novel approach could be a valuable tool in SSQ interpretation to identify specific fields of OD and could lead to a tailored management plan, prioritizing interventions aimed at reducing the risk of aspiration, ensuring proper nutrition, and enhancing swallowing safety and efficiency., (© 2024 John Wiley & Sons Ltd.)

Objective The purpose of this study was to examine the feasibility of a progressive virtual exercise and self-management intervention, the TeleRehabilitation with Aims to Improve Lower extremity recovery poststroke program (TRAIL), in individuals with stroke. Methods A single group pre-post study design was used. Thirty-two participants were recruited who were aged 19 years or older, had a stroke within 18 months of the beginning of the study, had hemiparesis of the lower extremity, and were able to tolerate 50 minutes of activity. Participants completed TRAIL, a synchronous exercise and self-management program delivered via videoconferencing. Participants received 8 telerehabilitation sessions over 4 weeks that were 60 to 90 minutes, with a trained physical therapist in a ≤2 to 1 participant-to-therapist ratio. Feasibility indicators in the areas of process (recruitment and retention rates, perceived satisfaction), resources (treatment fidelity and adherence, participant and assessor burden, therapist burden), management (equipment, processing time), and scientific indicators (safety, treatment response, treatment effect) were collected throughout the study using a priori criteria for success. The treatment effect was examined on the Timed "Up & Go" test, the virtual Fugl–Meyer Lower Extremity Assessment, the 30-Second Sit-to-Stand Test, the Functional Reach, the Tandem Stand, the Activities-Specific Balance Confidence Scale, the Stroke Impact Scale, and the Goal Attainment Scale. Results Forty-seven individuals were screened, of which 32 (78% male; median age of 64.5 years) were included for the study from 5 sites across Canada. Nine feasibility indicators met our study-specific threshold criteria for success: retention rate (0 dropouts), perceived satisfaction, treatment fidelity, adherence, therapist burden, equipment, and safety. In terms of treatment response and effect, improvements were observed in Timed "Up & Go" test (Cohen d  = 0.57); Fugl–Meyer Lower Extremity Assessment (d  = 0.76); 30-Second Sit-to-Stand Test (d  = 0.89); and Goal Attainment Scale (d  = 0.95). Conclusion The delivery of TRAIL, a lower extremity stroke rehabilitation program using videoconferencing technology, is feasible and appears to have positive influences on mobility, lower extremity impairment, strength, and goal attainment. Impact Community-based telerehabilitation programs, such as TRAIL, could extend the continuum of care during the transition back to community postdischarge or during global disruptions, such as Coronavirus Disease 2019 (COVID-19). Delivery of synchronous lower extremity rehabilitation via videoconferencing to community-dwelling stroke survivors is feasible. [ABSTRACT FROM AUTHOR]

Background: When re-learning a motor skill, practicing a variety of treatment targets promotes error processing and the exploration of motor control strategies, which initially disrupts accuracy during training (motor performance), but ultimately enhances generalization, retention, and transfer (motor learning). Cough skill training (CST) is feasible and efficacious to improve cough strength; however, previous studies have used the same practice target during training., Objectives: Our goal was to examine the impact of CST with variable practice on motor performance, motor learning, and respiratory system adaptations., Method: The study was a prospective three-visit single group design. Twenty individuals with Parkinson's disease (PD) and concomitant dysphagia and dystussia completed two sessions of CST involving three randomized practice targets. Cough, lung volume, and airway clearance outcomes were assessed before and after treatment sessions with long-term retention evaluated after 1 month., Results: Peak expiratory flow rate improved after CST with variable practice for voluntary single (β = 0.35 L/s) and sequential (β = 0.22 L/s) cough, which were maintained after 1 month without treatment. The ability to expel material from the upper airway demonstrated a small magnitude of improvement (β = -1.87%). During CST, participants altered lung volume based on the treatment target and lung volume decreased during reflex cough after completing CST., Conclusions: Individuals with PD demonstrated improvements in several aspects of motor learning after two sessions of CST with variable practice. Increasing lung volume may not be an implicit strategy to upregulate voluntary cough strength in this treatment paradigm. The findings support the need for larger investigations exploring the potential benefits of this CST approach., (© 2024 International Parkinson and Movement Disorder Society.)

Objective: To evaluate the effectiveness of ultrasound‐guided injection of botulinum toxin type A (BTX‐A) in treating sialorrhea. Methods: We recruited 32 sialorrhea subjects and they received an ultrasound‐guided injection of BTX‐A. The extent of salivation was evaluated according to the Visual Analog Scale (VAS), Drooling Severity and Frequency Scale (DSFS), and Saliva Flow Rate (SFR). Laryngeal secretions were evaluated based on Fiberoptic Endoscopic Evaluation of Swallowing (FEES) rated according to the Murray Secretion Scale (MSS). We assessed the extent of salivation and laryngeal secretions before injection and at 1, 2, and 4 weeks after injection. Results: The scores for the VAS, DSFS‐S, DSFS‐F, and DSFS‐T decreased significantly at 1, 2, and 4 weeks after injection compared with before injection (p <.05). Based on VAS, the efficacy was substantially higher at 2 and 4 weeks after injection than at 1 week after injection (p <.05). According to DSFS‐S and DSFS‐T, the efficacy was significantly higher at 4 weeks than at 1 week after injection (p <.05). The SFR and MSS scores at 1 and 2 weeks after injection were superior to those before injection (p <.05). Meanwhile, the SFR score 2 weeks after injection was superior to that 1 week after injection (p <.05). Conclusion: The ultrasound‐guided injection of BTX‐A can effectively reduce saliva secretion in patients with neurogenic dysphagia. Furthermore, it has the advantages of early onset time and lasting curative effects, which indicates that clinical promotion and application of this technique are justified. Level of Evidence: Level 3. [ABSTRACT FROM AUTHOR]

Background: Promoting self‐care is the core response strategy of the global health system to the burden of stroke. Although self‐care in stroke represents a dyadic phenomenon, the dyadic self‐care experience of stroke survivors and their caregivers is often overlooked in clinical practice. Objectives: The aim of this study was to explore the dyadic self‐care experience of stroke survivors and their caregivers. Design: A descriptive qualitative design was used to conduct the study. Results: The Consolidated Criteria for Reporting Qualitative Research was used for study reporting. A total of 21 stroke survivor–caregiver dyads were recruited for this study between May 2022 and September 2022. Data were collected through semistructured interviews and analyzed using thematic analysis. In this study, four themes were identified: (1) poor relationship quality of the dyads, (2) dyadic incongruence in managing stroke, (3) a slow and tiring dyadic self‐care process and (4) happy cooperation in coping with dyadic self‐care. Discussion and Conclusion: Healthcare professionals should give greater consideration to the contradictions and disparities that may arise between stroke survivors and caregivers during the self‐care process. It is crucial for them to provide personalized and tailored support and interventions that can assist these individuals in achieving a more optimal balance in their dyadic self‐care. Patient/Public Contribution: Patients were involved in the formulation of interview questions for this study. No members of the public were involved in this study. [ABSTRACT FROM AUTHOR]