Mixed methods evaluation of a self-management group programme for patients with neuromuscular disease and chronic fatigue.

Objective: To obtain insight into experiences of patients with a neuromuscular disease and chronic fatigue and their healthcare professionals regarding content and delivery of a multidisciplinary outpatient self-management group programme to improve social participation. This will inform future implementation.

Design: A mixed method study alongside a randomised controlled trial.

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.

Upper limb function and activity in people with facioscapulohumeral muscular dystrophy: a web-based survey.

Purpose To investigate the upper extremity (UE) at the level of impairments and related activity limitations and participation restrictions in people with facioscapulohumeral muscular dystrophy (FSHD). Methods The study was conducted using web-based questionnaires that were distributed amongst people with FSHD in the Netherlands. Eighty-eight respondents started the survey, and 71 completed it.

Negotiating role management through everyday activities: narratives in action of two stroke survivors and their spouses.

Purpose: To manage social roles is a challenging part of self-management post-stroke. This study explored how stroke survivors act as role managers with their spouses in the context of everyday activities.

Method: Two stroke survivors with a first time stroke living at home with a spouse were included.

Effectiveness and cost-effectiveness of a self-management group program to improve social participation in patients with neuromuscular disease and chronic fatigue: protocol of the Energetic study.

Background: Chronic fatigue is present in more than 60% of the patients with a neuromuscular disease and can be their most disabling symptom. In combination with other impairments, fatigue often results in low levels of physical activity and decreased social participation, leading to high societal costs. 'Energetic' is a self-management group program aimed at improving social participation, physical endurance and alleviating fatigue in these patients.

Evaluating fine motor coordination in children who are not ready for handwriting: which test should we take?

When children are not ready to write, assessment of fine motor coordination may be indicated. The purpose of this study was to evaluate which fine motor test, the Nine-Hole Peg Test (9-HPT) or the newly developed Timed Test of In-Hand Manipulation (Timed-TIHM), correlates best with handwriting readiness as measured by the Writing Readiness Inventory Tool In Context-Task Performance (WRITIC-TP). From the 119 participating children, 43 were poor performers.

Predictive validity of kindergarten assessments on handwriting readiness.

We investigated the predictive value of a new kindergarten assessment of handwriting readiness on handwriting performance in first grade as evaluated by the Systematic Screening for Handwriting Difficulties (Dutch abbreviation: SOS). The kindergarten assessment consisted of the Writing Readiness Inventory Tool In Context (WRITIC), the Beery-Buktenica Developmental Test of Visual-Motor Integration (Beery™VMI) and the Nine-Hole Peg Test (9-HPT). The WRITIC evaluates in kindergarten children (aged 5-6 years) prewriting skills, the Beery™VMI and 9-HPT evaluate visual motor integration and fine-motor coordination, all elements important for handwriting readiness.

Self-management: challenges for allied healthcare professionals in stroke rehabilitation--a focus group study.

Purpose: Self-management has become an important concept in stroke rehabilitation. This study explored allied healthcare professionals' (AHPs) perceptions and beliefs regarding the self-management of stroke survivors and their knowledge and skills regarding stroke self-management interventions.

Method: Four focus group interviews were conducted with 27 professionals.

Upper extremity function and activity in facioscapulohumeral dystrophy and limb-girdle muscular dystrophies: a systematic review.

Purpose: The aims of this review were (1) to provide insight into the natural course of upper-extremity (UE) impairments and UE activity limitations associated with facioscapulohumeral dystrophy (FSHD) and limb-girdle muscular dystrophies (LGMD), and (2) to provide an overview of outcome measures used to evaluate UE function and activity in patients with FSHD and LGMD.

Methods: Scientific literature databases (PubMed, MEDLINE, EMBASE, CINAHL and Cochrane) were searched for relevant publications.

Inclusion Criteria: (1) studies that included persons with a diagnosis of FSHD or LGMD; and (2) studies that reported the natural course of the UE functions and/or activity with outcome measures at these levels.

How is self-management perceived by community living people after a stroke? A focus group study.

Purpose: Self-management has become an important concept in stroke rehabilitation; however, the way that people post-stroke reflect on the concept of self-management has not yet been studied. This qualitative study explored the reflections of persons post-stroke on self-management, readiness and needs in self-management support.

Methods: Focus group interviews were conducted with 16 community living stroke survivors (53-84 years of age).

Upper extremity kinematics and muscle activation patterns in subjects with facioscapulohumeral dystrophy.

Objective: To compare the kinematics and muscle activity of subjects with facioscapulohumeral dystrophy (FSHD) and healthy control subjects during the performance of standardized upper extremity tasks.

Design: Exploratory case-control study.

Setting: A movement laboratory.

Writing Readiness Inventory Tool in Context (WRITIC): reliability and convergent validity.

Background/aim: This study examined the reliability and convergent validity of the Writing Readiness Inventory Tool in Context, a measurement evaluating writing readiness in kindergarten children (aged from five to six years).

Methods: Test-retest reliability was established with 59 children, inter-rater reliability with 72 children and convergent validity with 119 children. All participants were typically developing kindergarten children.

Development of the writing readiness inventory tool in context (WRITIC).

This article describes the development of the Writing Readiness Inventory Tool in Context (WRITIC), a measurement evaluating writing readiness in Dutch kindergarten children (5 and 6 years old). Content validity was established through 10 expert evaluations in three rounds. Construct validity was established with 251 children following regular education.

Efficacy of a combined physical and occupational therapy intervention in patients with subacute neuralgic amyotrophy: a pilot study.

Background: Neuralgic Amyotrophy (NA) is characterized by neuropathic pain, subsequent patchy paresis and possible sensory loss in the upper extremity. Many patients experience difficulties in performing activities of daily life and are unable to resume work. We developed a combined physical- and occupational therapy program for patients recovering from NA.

Patients' views on the impact of stroke on their roles and self: a thematic synthesis of qualitative studies.

Objective: To synthesize patients' views on the impact of stroke on their roles and self.

Data Sources: PubMed, CINAHL, Embase, PsycINFO, and Cochrane searched from inception to September 2010, using a combination of relevant Medical Subject Headings and free-text terms. This search was supplemented by reference tracking.

Residual complaints after neuralgic amyotrophy.

Objective: To develop recommendations regarding outcome measures and topics to be addressed in rehabilitation for persons with neuralgic amyotrophy (NA), this study explored which functions and activities are related to persisting pain in NA and which questionnaires best capture these factors.

Design: A questionnaire-based survey from 2 cross-sectional cohorts, one of patients visiting the neurology outpatient clinic and a cohort seen at a multidisciplinary plexus clinic.

Setting: Two tertiary referral clinics based in the Department of Neurology and Rehabilitation from a university medical center provided the data.

Exploring employment in consultation reports of patients with neuromuscular diseases.

Objectives: To explore consultation reports for patient and employment characteristics and recommendations on employment regarding patients with neuromuscular diseases (NMDs).

Design: Retrospective study of multidisciplinary reports.

Setting: An outpatient neuromuscular clinic at a university hospital.

Living with myotonic dystrophy; what can be learned from couples? A qualitative study.

Background: Myotonic dystrophy type 1 (MD1) is one of the most prevalent neuromuscular diseases, yet very little is known about how MD1 affects the lives of couples and how they themselves manage individually and together. To better match health care to their problems, concerns and needs, it is important to understand their perspective of living with this hereditary, systemic disease.

Methods: A qualitative study was carried out with a purposive sample of five middle-aged couples, including three men and two women with MD1 and their partners.

Implementation of multidisciplinary advice to allied health care professionals regarding the management of their patients with neuromuscular diseases.

Purpose: Patients with neuromuscular diseases (NMDs) do not always receive appropriate allied health care. This is partially because of the large heterogeneity among these conditions, some of which are quite rare. Individual allied health care professionals, therefore, have relatively little opportunity to develop relevant experience with these patients.

Exercise therapy and other types of physical therapy for patients with neuromuscular diseases: a systematic review.

Objective: To summarize and critically appraise the available evidence on exercise therapy and other types of physical therapies for patients with neuromuscular diseases (NMD).

Data Sources: Cochrane Central Register of Controlled Trials and Cochrane Database of Systematic Reviews, Medline, CINAHL, EMBASE (Rehabilitation and Physical Medicine), and reference lists of reviews and articles.

Study Selection: Randomized clinical trials (RCTs), controlled clinical trials (CCTs), and other designs were included.

Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part two.

Purpose: The Perceived Limitations and Needs Questionnaire (PLAN-Q) was developed to guide referral for a one-off consultation by occupational therapy (OT), physical therapy (PT), and speech therapy (ST) consultation, to provide a tailor-made advice on allied health interventions. This article reports on the testing of validity and reliability of the PLAN-Q.

Methods: In the validation study, 208 patients with a broad spectrum of neuromuscular disorders completed the PLAN-Q, Medical Outcome Study short-form 36-item version (SF-36), and the Impact of Participation on Autonomy (IPA) questionnaires.

Development of a tool to guide referral of patients with neuromuscular disorders to allied health services. Part one.

Purpose: Reasons for referral of patients with chronic, slowly progressive neuromuscular disorders (NMD) to occupational therapy (OT), physical therapy (PT) and speech therapy (ST) are often unclear. One-off consultations by OT, PT and ST can help patients and physicians to decide if therapy is needed. We present a construct for a questionnaire, the Perceived Limitations in Activities and Needs Questionnaire (PLAN-Q).

Referral of patients with neuromuscular disease to occupational therapy, physical therapy and speech therapy: usual practice versus multidisciplinary advice.

Unlabelled: PURPOSE To compare the volume of occupational therapy (OT), physical therapy (PT) and speech therapy (ST) as currently received by patients with neuromuscular diseases with the volume of OT, PT and ST recommended by a multidisciplinary team.

Method: The use of OT, PT and ST was studied retrospectively and prospectively in a reference group (n = 106) receiving usual care and in an intervention group (n = 102) receiving advice based on multidisciplinary assessments. A cost analysis was made and the implementation of the advice was evaluated at 6 months.

Reliability and validity of the fine motor scale of the Peabody Developmental Motor Scales-2.

This study examined the test-retest reliability, inter-rater reliability, convergent validity and discriminant validity of the Fine Motor Scale of the Peabody Developmental Motor Scales-second edition (PDMS-FM-2). Participants included two groups of 18 children between the ages of 4 and 5 years with and without mild fine motor problems. The PDMS-FM-2 was administered twice to 12 children and rated by two occupational therapists.

Occupational therapy for stroke patients: a systematic review.

Background And Purpose: Occupational therapy (OT) is an important aspect of stroke rehabilitation. The objective of this study was to determine from the available literature whether OT interventions improve outcome for stroke patients.

Methods: An extensive search in MEDLINE, CINAHL, EMBASE, AMED, and SCISEARCH was performed.