The regional development and implementation of home-based stroke rehabilitation using participatory action research.

Purpose: This study aims to overcome the challenges experienced in the regional development and implementation of home-based stroke rehabilitation (HBSR) and to understand the change process needed.

Materials And Methods: Using participatory action research (PAR), participants and researchers collaboratively produced knowledge and took action to improve the offered HBSR. Different methods for data generation and analysis were used, depending on the aim of the PAR phase and the participants' stages of change.

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.

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.

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.

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.

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.

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

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.

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.

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).

Swallowing, Chewing and Speaking: Frequently Impaired in Oculopharyngeal Muscular Dystrophy.

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.

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.

Dysphagia and Dysarthria in Children with Neuromuscular Diseases, a Prevalence Study.

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.

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.

Construct Validity of the Observable Movement Quality Scale in Pediatrics: Hypothesis Testing of a Formative Measurement Model.

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.

Factors influencing the implementation of Home-Based Stroke Rehabilitation: Professionals' perspective.

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.

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia.

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. Fourteen patients with a pure form of HSP were interviewed.

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.

Interrater Reliability of the Observable Movement Quality Scale for Children.

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. Paediatric physical therapists (=28; 2 men, 26 women) observed video-recorded assessments of age-related motor tests in children (=9) aged 6 months to 6 years and filled in the OMQ scale (possible score range 15-75 points).

"Everyone sees you sitting there struggling with your food": experiences of adolescents and young adults with cerebral palsy.

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.

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 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.

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.

The perspectives of spouses of stroke survivors on self-management - a focus group study.

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.

Feeding and Swallowing Disorders in Pediatric Neuromuscular Diseases: An Overview.

Feeding and swallowing problems in infants and children have a great impact on health and wellbeing. The aim of this study was to provide an overview of recognized feeding and swallowing problems in different groups of children with neuromuscular diseases, based on relevant literature and expert opinion, and to propose recommendations for the assessment and treatment of these problems. Almost all pediatric neuromuscular diseases are accompanied by feeding and swallowing problems during the different phases of deglutition, problems that give rise to a wide variety of signs and symptoms, which emphasizes the importance of a comprehensive feeding and swallowing assessment by a speech and language therapist.