Com-mens: a home-based logopaedic intervention program for communication problems between people with dementia and their caregivers - a single-group mixed-methods pilot study.

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.

Muscle ultrasound is a sensitive biomarker in oculopharyngeal muscular dystrophy.

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.

Reliability and Responsiveness of the Observable Movement Quality Scale for Children with Mild to Moderate Motor Impairments.

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 (ICC2,1: 0.79); intrarater reliability was high (ICC2,1: 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.

Improving Communication between Persons with Mild Dementia and Their Caregivers: Qualitative Analysis of a Practice-Based Logopaedic Intervention.

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.

The effect of a daily application of a 0.05% chlorhexidine oral rinse solution on the incidence of aspiration pneumonia in nursing home residents: a multicenter study.

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).

Nursing home-acquired pneumonia, dysphagia and associated diseases in nursing home residents: A retrospective, cross-sectional study.

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.

The Radboud Dysarthria Assessment: Development and Clinimetric Evaluation.

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.

Self-management develops through doing of everyday activities-a longitudinal qualitative study of stroke survivors during two years post-stroke.

BACKGROUND: A description of the complexity of the process of self-management and the way stroke survivors give meaning to their process of self-management post-stroke is lacking. This study explores how stroke survivors managed their lives, gave meaning to their self-management post-stroke and how this evolved over time. METHODS: Data was generated through participant observations and interviews of 10 stroke survivors at their homes at 3, 6, 9, 15 and 21 months post-discharge. A constant comparative method was chosen to analyse the data. RESULTS: 'Situated doing' was central in stroke survivors' simultaneous development of self-management and their sense of being in charge of everyday life post-stroke. Doing everyday activities provided the stroke survivors with an arena to explore, experience, evaluate, develop and adapt self-management and being in charge of everyday activities and daily life. The influence of stroke survivors' partners on this development was sometimes experienced as empowering and at other times as constraining. Over time, the meaning of self-management and being in charge changed from the opinion that self-management was doing everything yourself towards self-managing and being in charge, if necessary, with the help of others. Moreover, the sense of self-management and being in charge differed among participants: it ranged from managing only at the level of everyday activities to full role management and experiencing a meaningful and valuable life post-stroke. CONCLUSIONS: The findings of this study indicate the doing of activities as an important arena in which to develop self-management and being in charge post-stroke. Stroke self-management programs could best be delivered in stroke survivors' own environment and focus on not only stroke survivors but also their relatives. Furthermore, the focus of such interventions should be on not only the level of activities but also the existential level of self-management post-stroke.

Language impairment in cerebellar ataxia.

BACKGROUND: Several studies have suggested that language impairment can be observed in patients with cerebellar pathology. The aim of this study was to investigate language performance in patients with spinocerebellar ataxia type 6 (SCA6). METHODS: We assessed speech and language in 29 SCA6 patients with standardized linquistic tests and correlated this with the severity of ataxia, as quantified by the Scale of Assessment and Rating of Ataxia. RESULTS: Individual patients show mild-to-moderate linguistic impairment. Linguistic abnormalities were most distinct on the writing and comprehension subtests. A strong correlation between severity of ataxia and linguistic performance was consistently found. CONCLUSIONS: This study confirms the occurrence of linguistic impairments in patients with cerebellar degenerative diseases, such as SCA6. The relation between linguistic abnormalities and severity of ataxia provides further evidence for a role of the cerebellum in linguistic processing.

Muscle MRI in Patients With Oculopharyngeal Muscular Dystrophy: A Longitudinal Study

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.

Clinimetric Evaluation of the Experienced Communication in Dementia Questionnaire.

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.

Online monitoring of focal spasticity treatment with botulinum toxin in people with chronic stroke or hereditary spastic paraplegia: a feasibility study.

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.

Quantitative ultrasound of the tongue and submental muscles in children and young adults.

INTRODUCTION: The purpose of this study was to assess the feasibility of quantitative muscle ultrasound (QMUS) to visualize oral muscles and to establish normative data for muscle thickness and echo intensity of submental and tongue muscles in healthy children and young adults. The data were compared with those of 5 patients with Duchenne muscular dystrophy (DMD). METHODS: Ultrasound images from the suprahyoid region and from the surface of the tongue were made in 53 healthy subjects aged 5 to 30 years. RESULTS: All measurements were feasible in all subjects and patients with good reproducibility except for the mylohyoid muscle. Muscle thickness depended on height, and echo intensity depended on weight. Our findings suggest gradual involvement of oral muscles in DMD. CONCLUSIONS: QMUS in oral muscles is feasible in healthy children, adults and patients with DMD. These data show that it is possible to differentiate between healthy persons and patients with DMD.

Barriers to and facilitators for the use of an evidence-based occupational therapy guideline for older people with dementia and their carers.

OBJECTIVE: Implementing evidence-based guidelines is not a simple task. This study aimed to define barriers to and facilitators for implementing the proven and effective Community Occupational Therapy in Dementia (COTiD) guideline for older people with dementia and their carers. METHODS: The qualitative method we used was the grounded theory. We collected data from focus group interviews with 17 occupational therapists (OTs) and telephone interviews with 10 physicians and 4 managers. We analysed the data with the constant comparative method by identifying codes, categories, and main themes. RESULTS: The main themes in barriers that OTs encountered were that they did not feel competent in treating older people with dementia at home according to the guideline; they had difficulties prioritising in this complex treatment, both for the client and themselves; and they were unsure about the minimal criteria for guideline adherence. The intensity of this programme was the main barrier. The barriers that confronted physicians and managers were lack of knowledge about occupational therapy and its reimbursement and lack of available trained OTs. For the OTs, the guideline's content and focus, evidence, and external support facilitated the use of the guideline. For physicians and managers, the guideline's evidence base and its benefits for clients and carers were the main facilitators. CONCLUSIONS: This study generates knowledge for applying innovations in health care settings. Improvement of the OTs' knowledge and self-confidence is needed for using the guideline. We expect that more competent OTs will motivate their physicians and managers to use this successful COTiD intervention.

Enhancing the role of the social network in activity (re)engagement post-stroke: a focus group study with rehabilitation professionals.

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.

Experienced consequences of spasticity and effects of botulinum toxin injections: a qualitative study amongst patients with disabling spasticity after stroke.

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.

Development of the Experienced Communication in Dementia Questionnaire: A Qualitative Study.

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.

Longitudinal Assessment of Strength, Functional Capacity, Oropharyngeal Function, and Quality of Life in Oculopharyngeal Muscular Dystrophy.

ObjectiveOculopharyngeal 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.MethodsPatients, invited by their treating physicians or from the national neuromuscular database, and invited family members, were examined twice, 20 months apart, using fixed dynamometry, 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.ResultsDisease progression was captured by 8 out of 18 measures over 20 months in forty-three genetically confirmed OPMD patients. The largest deterioration was seen in deltoid muscle strength (-27% (range -17 - -37%)), followed by the quadriceps (-14% (range -6 - -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). Domain 'Physical functioning' of the SF-36 Health Survey significantly deteriorated (p=0.044). No relationship was found between disease progression and genotype or disease duration (p>0.05).ConclusionsDespite the slow disease progression of OPMD, this study showed that several outcome measures detected progression within 20 months. The deltoid muscle strength, measured by fixed dynamometry, showed the greatest decline. This longitudinal data provides clinical outcome measures that can be used as biomarkers in future clinical trials.

Healthcare needs, expectations, utilization, and experienced treatment effects in patients with hereditary spastic paraplegia: a web-based survey in the Netherlands.

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.

Evaluating the feasibility and the potential efficacy of e-learning-based speech therapy (EST) as a web application for speech training in dysarthric patients with Parkinson's disease: a case study.

OBJECTIVE: As a Web application for speech training, e-learning-based speech therapy (EST) is assumed to have potential for neurological patients who aim at independent speech training in their home environment. This article reports a case study of a patient with dysarthric speech due to Parkinson's disease (PD) who enrolled in a 4-week intensive speech training through EST. The primary goal was to investigate the feasibility and the potential efficacy of EST as a Web application for speech training in dysarthric patients with PD. MATERIALS AND METHODS: The participant used EST, following a speech training program containing parts of the pitch limiting voice treatment for patients with PD. The feasibility of EST for independent speech training in the home environment was verified through a questionnaire. The questionnaire addressed the participant's individual experiences with EST as well as the extent of satisfaction with technological features of EST, the content of the speech training, and the suitability of the home training environment. The potential efficacy of EST as a device to improve speech intelligibility was investigated using a repeated measures with randomized blocks design. The proportion of correct orthographic transcriptions of semantically unpredictable sentences as well as ratings of perceived intelligibility on a 10-point scale were used as measures for speech intelligibility. RESULTS: Outcomes of the questionnaire resulted in recommendations to enhance EST feasibility. Speech intelligibility, as measured by transcription scores, improved significantly after EST training. This improvement was maintained for 2 weeks after completing the EST training, whereas considerably lower scores were observed after 11 weeks without training. Subjective ratings of intelligibility did not show significant differences across time. CONCLUSIONS: The results of this case study confirm the potential of EST for patients with PD.