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Introduction Early evaluation of writing readiness is essential to predict and prevent handwriting difficulties and its negative influences on school occupations. An occupation-based measurement for kindergarten children has been previously developed: Writing Readiness Inventory Tool In Context (WRITIC). In addition, to assess fine motor coordination two tests are frequently used in children with handwriting difficulties: the modified Timed Test of In-Hand Manipulation (Timed TIHM) and the Nine-Hole Peg Test (9-HPT). However, no Dutch reference data are available. Aim To provide reference data for (1) WRITIC, (2) Timed-TIHM and (3) 9-HPT for handwriting readiness assessment in kindergarten children. Methods Three hundred and seventy-four children from Dutch kindergartens in the age of 5 to 6.5 years (5.6±0.4 years, 190 boys/184 girls) participated in the study. Children were recruited at Dutch kindergartens. Full classes of the last year were tested, children were excluded if there was a medical diagnosis such as a visual, auditory, motor or intellectual impairment that hinder handwriting performance. Descriptive statistics and percentiles scores were calculated. The score of the WRITIC (possible score 0–48 points) and the performance time on the Timed-TIHM and 9-HPT are classified as percentile scores lower than the 15th percentile to distinguish low performance from adequate performance. The percentile scores can be used to identify children that are possibly at risk developing handwriting difficulties in first grade. Results WRITIC scores ranged from 23 to 48 (41±4.4), Timed-TIHM ranged from 17.9 to 64.5 seconds (31.4± 7.4 seconds) and 9-HPT ranged from 18.2 to 48.3 seconds (28.4± 5.4). A WRITIC score between 0–36, a performance time of more than 39.6 seconds on the Timed-TIHM and more than 33.8 seconds on the 9-HPT were classified as low performance. Conclusion The reference data of the WRITIC allow to assess which children are possibly at risk developing handwriting difficulties.

Contains fulltext : 244841.pdf (Publisher’s version ) (Open Access) INTRODUCTION/AIMS: As life expectancy improves for patients with Duchenne muscular dystrophy (DMD), new symptoms are likely to arise. This aims of this study are: (1) to explore the prevalence of a broad variety of symptoms in the various stages of DMD (with and without steroid use); (2) to explore the prevalence of common secondary diagnoses; and (3) to evaluate the social participation level of patients with DMD older than 16 y of age; and to explore correlations between social participation and symptoms. METHODS: A cross-sectional self-report questionnaire, including questions on functional level and health status, as well as a standardized participation scale was distributed among Dutch patients with DMD. RESULTS: Eighty-four male patients with a mean age of 22.0 (SD = 10.0) y were enrolled. The most prevalent and limiting symptoms were difficulty coughing (58%), coldness of hands (57%), contractures (51%), stiffness (49%), fatigue (40%), myalgia (38%), and low speech volume (33%). Prevalent secondary diagnoses included cardiac disease (14%), neurobehavioral diagnosis (13%), low blood pressure (13%), and arthrosis (5%). Social participation correlated negatively with coldness of hands (r = - .29; P

Item does not contain fulltext The aim of this research was to study impairments, activity limitations and participation restrictions due to upper limb involvement in people with four different types of neuromuscular disorders (NMD) - FacioScapuloHumeral Dystrophy (FSHD), Limb-Girdle Muscular Dystrophy (LGMD), Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD) - and to investigate whether common or different profiles could be identified. Total of 267 respondents with NMD from the Netherlands answered a set of questionnaires covering upper limb impairments (pain and stiffness), activity limitations and participation restrictions. Pain was most often reported by persons with FSHD. Problems in the FSHD group were mainly characterized by relatively high scores for pain and stiffness and low scores for activity limitations. People with LGMD reported also low scores for activity limitations. Conversely, people with SMA and DMD experienced in general relatively low scores for pain and stiffness and high scores for activity limitations. Although people with FSHD and LGMD had relatively few activity limitations, all NMD groups experienced restrictions when participating in social activities. Our results indicate specific profiles of upper limb function in different types of NMD. While the profile observed in persons with FSHD seems to reflect overuse, the profile seen in persons with DMD and SMA is suspicious of disuse, each requiring a specific rehabilitation strategy.

Background: To retard shortening of finger flexors in patients with Duchenne muscular dystrophy (DMD), hand orthoses are prescribed. However, many patients do not wear the orthoses regularly. To optimize orthotic interventions, we need insight into the factors influencing compliance. Objective: To evaluate the compliance regarding hand orthoses in an adult DMD population and to explore experiences and perceptions of DMD patients wearing orthoses, and of their caregivers. Methods: Mixed methods observational study, combining quantitative and qualitative data from medical charts combined with qualitative semi-structured interviews using a constant comparative method and a short validated questionnaire (D-QUEST). Results: 65 medical charts were analyzed. 48 patients were assessed as needing hand orthoses, of whom 37.5 % were compliant. Qualitative data analyses revealed (1) motivation: preservation of hand function; (2) barriers: discomfort and impediments; (3) facilitators: good fit and personalized wearing schedule; (4) fitting process: satisfactory, but patients do not readily seek help when barriers appear. Conclusions: Patients are motivated to wear hand orthoses, but often discontinue use because of orthosis-and disease-specific barriers. The identification of these barriers leads to practical and feasible recommendations concerning the orthoses and the fitting process, such as less rigid material, preservation of some function while wearing the orthoses, and fixed evaluation points. The findings were confirmed by the D-QUEST.

Contains fulltext : 173234.pdf (Publisher’s version ) (Closed access) 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. The questionnaires covered the following dimensions: Function, Activity and Participation of the International Classification of Functioning Disability and Health. Results More than 40% of the respondents experienced pain in one arm or both the arms. Increased pain and stiffness scores and longer disease duration were associated with increased limitation scores. For basic activities, lifting the arm above shoulder-level was most frequently reported as most limited, coherent with the clinical picture of FSHD. Among the respondents, 50% indicated restrictions at school, 78% indicated restrictions at work and more than 80% indicated restrictions whilst participating in sports, hobbies, household activities and romantic relationships. Conclusions This study has shown that alongside the well-known problem of lifting the arms above shoulder-level, UE activities below shoulder height during vocational and occupational activities are also problematic in patients with FSHD. Alongside disease duration, pain and stiffness are associated with UE activity limitations. Implications for Rehabilitation Attention is needed for pain and experienced stiffness in the upper extremity as it is frequently present in patients with FSHD. Rehabilitation professionals need to be aware that patients with FSHD not only experience problems with activities above shoulder height, but also with activities below shoulder height. At least 50% of the patients with FSHD experience restrictions in participation as a result of limitations in their UE.

ObjectiveTo investigate the effectiveness of Energetic, a self-management group program combining aerobic training, energy conservation management, and relapse prevention to improve social participation in patients with neuromuscular disease (NMD) and chronic fatigue.MethodsIn this multicenter, assessor-blinded, 2-armed randomized controlled trial with repeated measurements, 53 patients with various types of NMD and chronic fatigue were randomly allocated to Energetic, a 4-month group intervention, or to usual care. The primary endpoint was social participation assessed with the Canadian Occupational Performance Measure (COPM) performance scale immediately postintervention. Secondary outcomes included COPM satisfaction scale, 6-Minute Walk Test (6MWT), and Checklist Individual Strength–subscale fatigue. Participants were followed for 11 months postintervention. Data were analyzed with linear models that account for repeated measurements.ResultsDirectly after intervention, the mean group difference for COPM-performance was 1.7 (95% confidence interval [CI] 1.0–2.4; p < 0.0001) in favor of the intervention group (n = 29), adjusted for baseline, sex, diagnosis, and work status. This effect was retained at 11 months follow-up (0.9; 95% CI 0.0–1.7; p = 0.049). The COPM satisfaction scale and 6MWT improved more in the intervention group compared to usual care. After 3 and 11 months follow-up, most beneficial effects on social participation and functional endurance were retained.ConclusionEnergetic led to sustainable improvements in social participation and functional endurance compared to usual care in patients with NMD and chronic fatigue.Clinicaltrials.gov identifierNCT02208687.Classification of evidenceThis study provides Class III evidence that a combination of aerobic training, energy conservation management, and relapse prevention improves social participation in patients with NMD and chronic fatigue.

There is lack of knowledge, evidence, and guidelines for rehabilitation interventions for persons with neuralgic amyotrophy (NA) or brachial plexus pathology. A first pilot study, evaluating the effect of an integrated rehabilitation programme, showed improvements in activity and participation levels.To gain insight, from the perspective of patients and therapists, into the critical ingredients of the programme, that contributed to improvements in activity and participation.A qualitative study using semi-structured interviews with eight patients and five therapists (three occupational therapists and two physical therapists). Participants were asked to identify and describe factors regarding the rehabilitation that they perceived as positive and aspects of the programme that could be improved. Data were analysed using a constant comparative approach.Patients reported (1) Time to diagnose: "Finally I'm in the right place;" (2) Awareness: "They gave me a mirror;" (3) Partnership: "There was real contact with the therapists; we made decisions together;" (4) Close collaboration: "Overlapping scopes of practice; doing the same from a different perspective;" and finally (5) Self-management: "Now I can do it myself." Therapists reported (1) "Patients knowledge and understanding is critical to success;" (2) "Activate problem solving and decision making;" (3) "Personalize your therapy; it's more than just giving exercises and information;" (4) "Constant consultation within the team; consistency in messages and approach;" and (5)" Ultimately the patient is in charge."The critical ingredients, correspond well with each other and include a person-centred approach, education, support in problem solving and decision making and an integrated team approach. These ingredients provided the patients with confidence to take responsibility to manage their everyday lives, the ultimate goal of the programme. Implications for rehabilitation Both patients and therapists believe that the ability to self-manage and take control should be the outcome of high quality integrated rehabilitation programmes for patients with neuralgic amyotrophy and/or other brachial plexus injuries. A person-centred, collaborative, and integrated team approach, among all members of the team, are critical components of care delivery in personalised interventions. Critical programme ingredients are knowledge and education of both the patient and therapists; partnership between patient-therapist and within the team; patient activation and self-reflection; and personalised care. Patients recommend more options for personalisation of the intensity and duration of rehabilitation, the possibility to consult a psychologist and peer support within a group setting.

Overweight and obesity are common in patients with facioscapulohumeral dystrophy (FSHD) and myotonic dystrophy type 1 (DM1). Lifestyle change is often challenging for patients with neuromuscular diseases, especially to increase physical activity. When lifestyle changes have not been effective, bariatric surgery is a treatment option. However, very little is known about the benefits and risks in patients with neuromuscular disorders. This study therefore aims to obtain insight into the patients' perspectives and experiences, the outcome, effects and risks of bariatric surgery in these disorders. We performed a qualitative study, consisting of 14 in-depth interviews with six patients (three FSHD and three DM1; five women, one man; aged range 31-47 years), four relatives, three bariatric surgeons and one general practitioner. The study used a qualitative descriptive method. Four themes were formulated: (1) overweight as burden; (2) bariatric surgery as last option; (3) not your standard patient; and (4) a different life, a different me. This study shows that bariatric surgery has beneficial physical and mental effects for most patients with FSHD and DM1, and does not influence the muscular disease course. Bariatric surgery is feasible in patients with FSHD and DM1, but specific precautions and a suitable follow-up including tailored dietary and training advices are required. (C) 2018 Elsevier B.V. All rights reserved.

Contains fulltext : 153938.pdf (Publisher’s version ) (Closed access) 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. Verbal questions and mind mapping were used to collect data. A constant comparative framework was used for analysis. RESULTS: The AHPs discussed different levels of post-stroke self-management, depending on factors such as pre-stroke skills, recovery-phases post-stroke and cognitive abilities of the stroke patients. They hesitated about stroke clients' capacities to self-manage. AHPs questioned whether their own attitudes and skills were really supportive for stroke clients' self-management and criticised stroke services as being too medically oriented. They recommended that self-management programmes should focus both on clients and caregivers and be delivered at peoples' homes. CONCLUSION: Professional perceptions and beliefs are important factors to take into account when implementing stroke self-management programmes. Before professionals can enable stroke survivors to self-manage, they first need support in acquiring knowledge and skills regarding post-stroke self-management. Moreover, professionals could benefit from behavioural change models, and professionals recognised that stroke self-management interventions would be most beneficial when delivered post-discharge at people's homes. IMPLICATIONS FOR REHABILITATION: Post-stroke self-management is a learning process with different levels dependent on pre-stroke lifestyle and self-management skills, the post-stroke phase of recovery, the cognitive abilities of stroke survivors and the support of caregivers (co-management). Persons with cognitive impairments are not persons who cannot learn to self-manage; rather, they need more specific self-management support. Case studies describing the abilities of stroke survivors, who are successful in self-management post-stroke, can help to develop "ability oriented" stroke-illness scripts. Addressing "ability oriented" stroke-illness scripts in bachelor and post-graduate education will enhance positive professional beliefs concerning the self-management post-stroke, and will help professionals in coaching in stroke survivors' goal setting in self-management programmes. Professionals' account suggests that stroke self-management programmes should also be delivered post-discharge at stroke survivors' own homes.

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.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.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.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.

Contains fulltext : 168136.pdf (Publisher’s version ) (Open Access) 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.

Study Design Longitudinal clinical measurement. Introduction Sensory alterations in the hand can present as both decreased sensation or numbness, and hyperesthesia, including mechanical allodynia and cold intolerance. However, few patient-reported outcomes have been developed and validated for evaluation, particularly for increased sensitivity. The Radboud Evaluation of Sensitivity was developed in the Netherlands for patient-reported evaluation of hand sensitivity in complex regional pain syndrome. Purpose of the Study The purpose of this study was to translate into English and culturally validate the Radboud Evaluation of Sensitivity for the North American context. Methods Forward and backward translation, followed by a psychometric evaluation of the synthesized version of the translated tool, was undertaken in a heterogeneous group of persons after hand injury, including nerve injuries, hand trauma, and complex regional pain syndrome. Results Thirty-six persons completed test-retest reliability testing, yielding an intraclass correlation coefficient of 0.92 (95% CI 0.85 to 0.96) for single measures. Internal consistency was also high at α = 0.96 in a larger sample (n = 56). Although some support for construct validity was generated, several validity hypotheses were not confirmed. Of interest, there appeared to be significant differences in the scores between persons with hypoesthesia as compared with those with hyperesthesia. Conclusions The Radboud Evaluation of Sensitivity, English version appears to be a reliable tool for the self-reported evaluation of sensory alterations in the hand, including both hypoesthesia and hyperesthesia. More research is needed to add to the extent of and confidence in the validity and responsiveness of this assessment. Level of Evidence Level II.

Item does not contain fulltext 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. Data were generated through participant observations at their own environment at 3, 6, 9, 15 and 21 months post-discharge. The narrative analysis focused on the actions of participants. RESULTS: Daily activities can be understood as an arena where role management and a meaningful live is negotiated and co-constructed with others. Everyday activities gave stroke survivors and their spouses insight into stroke survivors' capacities in daily situations. This was sometimes empowering, and other times conflicting when a spouse had negative perceptions of the abilities of the stroke survivors. CONCLUSION: The findings add to the current understanding of self-management and role management with regard to how these are situated in everyday activities. Daily activities can help both spouses to reflect and understand about self-management, role management and comanagement in daily life. Moreover, observing stroke survivors in everyday situations provides professionals with concrete pictures of stroke survivors' performance and self-management in interaction with their spouses. Implications for Rehabilitation Self-management is a dynamic process in which individuals actively manage a chronic condition and finally live a meaningful life with a long-term chronic condition; self-management can be divided into medical, role, and emotional management; comanagement is when individuals activate resources and use the capacities of other persons to manage a situation together. Self-management is situated in everyday activities. Everyday activities give stroke survivors and their partners impressions about stroke survivors' self-management abilities post-stroke in an everyday context. Everyday activities give stroke survivors and their partners an arena where role management and a meaningful life are negotiated and coconstructed through doing. Observing stroke survivors in everyday situations provides professionals a concreter picture of stroke survivors' self-management and comanagement with their partners than can be obtained from an informal interview.

Contains fulltext : 155131.pdf (Publisher’s version ) (Open Access) 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. The primary aim of this study is to evaluate the effectiveness and cost-effectiveness of the Energetic program. METHODS/DESIGN: A multicentered, assessor-blinded, two-armed randomized controlled trial is conducted with evaluations at inclusion and four, seven and fifteen months later. The study includes patients with a neuromuscular disease and chronic fatigue and, when present, their caregivers. The participants are randomized (ratio 1:1) to either an intervention group, receiving the Energetic program, or a control group, receiving usual care (i.e., no specific intervention). The Energetic program covers four months and includes four modules: 1) individually tailored aerobic exercise training; 2) education about aerobic exercise; 3) self-management training in applying energy conservation strategies; and 4) implementation and relapse prevention in daily life. Two months after cessation of the program a booster session is provided. The primary outcome is the perceived performance score of the Canadian Occupational Performance Measure (COPM). Secondary outcomes include the COPM-satisfaction score, and measures of fatigue, physical endurance, activity engagement, mood, and self-efficacy. Caregiver burden is also evaluated as a secondary outcome. Health-related quality of life and medical and societal costs are assessed to estimate cost-effectiveness of the program. DISCUSSION: The Energetic study is the first randomized controlled trial to evaluate the effectiveness and cost-effectiveness of a combined physical and self-management group training program for improving social participation, physical endurance and alleviating fatigue in patients with neuromuscular diseases. It will generate new insights in (cost-)effective rehabilitation strategies for these incurable conditions. TRIAL REGISTRATION: Clinicaltrials.gov NCT02208687 .

Item does not contain fulltext 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). Both verbal questions and photo elicitations were used to collect data. A constant comparative framework was used for the analysis. RESULT: Participants described their self-management as a complex, long-term, personal learning process. Post-discharge, participants were not ready to self-manage. Aside from individual self-management, participants also mentioned co-management with relatives. Relatives could provide support, but they also limited the development of participants' self-management skills. Participants missed having professional support post-discharge and would have appreciated additional psychological and emotional support in their process of self-management. CONCLUSION: Self-management post-stroke is complex. Stroke self-management programmes may be optimised when integrating role and emotional management in addition to medical management. Although readiness to self-manage differs among individuals, support should start as soon as possible and continue post-discharge in people's personal environments. Self-management programmes should not only focus on self-management of stroke survivors but also on co-management with relatives.

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. Convergent validity of the 9-HPT and Timed-TIHM with WRITIC-TP was determined, and test-retest reliability of the Timed-TIHM was examined in 59 children. The results showed that correlations of the 9-HPT and Timed-TIHM with the WRITIC-TP were similar (rs = -0.40). The 9-HPT and the complex rotation subtask of the Timed-TIHM had a low correlation with the WRITIC-TP in poor performers (rs = -0.30 and -0.32 respectively). Test-retest reliability of the Timed-TIHM was significant (Intraclass Correlation Coefficient = 0.71). Neither of these two fine motor tests is appeared superior. They both relate to different aspects of fine motor performance. One of the limitations of the methodology was unequal numbers of children in subgroups. It is recommended that further research is indicated to evaluate the relation between development of fine motor coordination and handwriting proficiency, on the Timed-TIHM in different age groups.

Item does not contain fulltext 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. To identify scale constructs, factor analysis was performed. Discriminative validity was established by examining contrast groups with good (n = 142) and poor (n = 109) performers in paper-and-pencil tasks. Content validity was high with 94.4% agreement among the experts. Two reliable factors were found in the performance of paper-and-pencil tasks with Cronbach's alphas of 0.82 and 0.69 respectively. The contrast groups differed significantly in two WRITIC subdomains: "Sustained attention" and "Task performance". Our findings indicated that the WRITIC is feasible for use in the classroom.

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.Participants: Subjects (N=19) with FSHD (n=11) and healthy control subjects (n=8) were measured.Interventions: Not applicable.Main Outcome Measures: Kinematic data were recorded using a 3-dimensional motion capturing system. Muscle activities, recorded using electromyography, were obtained from 6 superficial muscles around the glenohumeral joint. Shoulder elevation and elbow flexion angles, and maximum electromyographic activity during the movements as a percentage of maximum voluntary contraction (MVC) were calculated.Results: Kinematic differences between the FSHD group and the healthy control group were found in the shoulder elevation angle during single shoulder movements and both reaching tasks. In general, subjects with FSHD had higher percentages of muscle activation. The median activity of the trapezius was close to the MVC activity during the single shoulder movements. Moreover, deltoid and pectoralis muscles were also highly active.Conclusions: Higher activation of the trapezius in subjects with FSHD indicates a mechanism that could help relieve impaired shoulder muscles during arm elevation around shoulder height. Compared with healthy subjects, persons with FSHD activated their shoulder muscles to a greater extent during movements that required arm elevation. (c) 2014 by the American Congress of Rehabilitation Medicine

Item does not contain fulltext 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. Convergent validity was examined with the Beery-Buktenica Developmental Test of Visual-Motor Integration and the Nine-Hole Peg Test. RESULTS: We found excellent test-retest and inter-rater reliability on the future norm-referenced subdomain 'Task performance' of Writing Readiness Inventory Tool in Context with intra-class correlation coefficient ranging from 0.92 to 0.95. On the other criterion-referenced subdomains, we found fair to good reliability with intra-class correlation coefficient ranging from 0.70 to 1.0 and weighted Kappa ranging from 0.30 to 0.89. Correlations with the Beery-Buktenica Developmental Test of Visual-Motor Integration and the Nine-Hole Peg Test were moderate with rs ranging from 0.34 to 0.40 and these are comparable with correlations in other handwriting studies. CONCLUSION: Writing Readiness Inventory Tool in Context is an assessment of writing readiness that is stable over time and between raters. The expected moderate correlations with the Beery-Buktenica Developmental Test of Visual-Motor Integration and the Nine-Hole Peg Test support the construct of writing readiness.

Item does not contain fulltext 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. PARTICIPANTS: A referred sample of patients (N=248) with either idiopathic or hereditary NA who fulfilled the criteria for this disorder, in whom the last episode of NA had been at least 6 months ago and included brachial plexus involvement. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Two custom clinical screening questionnaires were used as well as the Shoulder Rating Questionnaire-Dutch Language Version, the Shoulder Pain and Disability Index (SPADI), the Shoulder Disability Questionnaire (SDQ), and Overall Disability Sum Score. RESULTS: The survey confirms the high prevalence of persisting pain and impairments. More than half of the patients were restricted by pain, while in those without pain 60% experienced residual paresis. Correlations show an intimate relation between pain, scapular instability, problems with overhead activities, and increased fatigability. A standard physical therapy approach was ineffective or aggravated symptoms in more than 50%. CONCLUSIONS: Pain and fatigue are strongly correlated to persisting scapular instability and increased fatigability of the affected muscles in NA. Our results suggest that an integrated rehabilitation approach is needed in which all of these factors are addressed. We further recommend using the SPADI and SDQ in future studies to evaluate the natural course and treatment effects in NA.

Item does not contain fulltext 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. OBJECTIVE: Evaluation of the effectiveness of a multidisciplinary intervention program for patients with subacute NA. METHODS: We performed a within subject proof-of-principle pilot study in eight patients with subacute NA. Patients followed 8 hours of physical and 8 hours of occupational therapy spread over a 16-week period. Primary outcome measures: The Canadian Occupational Performance Measure (COPM) and Shoulder Rating Questionnaire (SRQ). Secondary outcome measure: Disability of Arm Shoulder and Hand (DASH). RESULTS: Improvements (mean (95% CI)) were found in the performance and satisfaction scores of the COPM +2.3 (0.9-3.7) and +1.4 (0.4-2.4) points, respectively and the SRQ +14.8 (7.4-22.0) points. The majority of patients (6 out of 8) also demonstrated improvements in the DASH. CONCLUSION: The proposed physical and occupational therapy program, may be effective for patients with subacute NA, as demonstrated by improvements in activity, performance and participation.

Minis MA, Cup EH, Heerkens YF, Engels JA, van Engelen BG, Oostendorp RA. Exploring employment in consultation reports of patients with neuromuscular diseases. Arch Phys Med Rehabil 2012;93:2276-80. Objectives: To explore consultation reports for patient and employment characteristics and recommendations on employ- ment regarding patients with neuromuscular diseases (NMDs). Design: Retrospective study of multidisciplinary reports. Setting: An outpatient neuromuscular clinic at a university hospital. Participants: Reports (N102) of patients with NMDs. Interventions: Based on one-off consultations by occupational therapists, physical therapists, and speech therapists and a multidisci- plinary meeting, recommendations were developed regarding therapy content and volume in primary care or rehabilitation settings. Main Outcome Measures: A checklist has been developed to examine employment characteristics. A general questionnaire has been used including demographic variables and data on employment. Results: Of the 102 reports available, 86 were included for analysis. Sixty-nine reports contained information on employ- ment. Thirty-seven patients (43%) with NMD were employed, most in white-collar or moderately strenuous jobs. Of the 37 employed patients, 28 (76%) worked using adaptations. Thirty- two (87%) had employment problems; of these, 15 (40%) needed improvement in 1 or more environmental factors. Twenty patients (54%) needed advice regarding participation in employment, of whom 19 were referred to primary care or rehabilitation settings for treatment to enhance employment participation. Conclusions: Eighty percent of the included consultation re- ports contained information on employment. Less than half the patients with NMD were employed, most in office-related jobs, using some kind of adaptations. Nineteen of 20 patients who agreed to recommendations regarding therapy were adequately referred by occupational therapists and physical therapists for treatment of employment problems.

Contains fulltext : 96062.pdf (Publisher’s version ) (Open Access) 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. Fifteen in-depth interviews with persons with MD1, with their partners and with both of them as a couple took place in the homes of the couples in two cities and three villages in the Netherlands in 2009. RESULTS: People with MD1 associate this progressive, neuromuscular condition with decreasing abilities, describing physical, cognitive and psychosocial barriers to everyday activities and social participation. Partners highlighted the increasing care giving burden, giving directions and using reminders to compensate for the lack of initiative and avoidant behaviour due to MD1. Couples portrayed the dilemmas and frustrations of renegotiating roles and responsibilities; stressing the importance of achieving a balance between individual and shared activities. All participants experienced a lack of understanding from relatives, friends, and society, including health care, leading to withdrawal and isolation. Health care was perceived as fragmentary, with specialists focusing on specific aspects of the disease rather than seeking to understand the implications of the systemic disorder on daily life. CONCLUSIONS: Learning from these couples has resulted in recommendations that challenge the tendency to treat MD1 as a condition with primarily physical impairments. It is vital to listen to couples, to elicit the impact of MD1, as a multisystem disorder that influences every aspect of their life together. Couple management, supporting the self-management skills of both partners is proposed as a way of reducing the mismatch between health services and health needs.

Contains fulltext : 97987.pdf (Publisher’s version ) (Closed access) 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. To overcome this problem, we developed specialist multidisciplinary advice regarding management of patients with NMD for occupational therapy (OT), physical therapy (PT) and speech therapy (ST) in a primary care or rehabilitation setting. The aims of the study were to explore to what extent this allied health care advice was implemented with a focus on the amount of therapy received and to explore possible barriers to implementation. METHODS: One-hundred two patients visited the Neuromuscular Centre Nijmegen for OT, PT and ST consultations. Integrated allied health care advice was written on the basis of these consultations and a multidisciplinary meeting. All patients, their therapists and rehabilitation physicians received this advice. Following the advice, questionnaires were sent out at baseline and at 6 months follow up, collecting data on implementation of the amount of therapy suggested and on possible barriers for adherence. RESULTS: Advice for ST and OT was fully implemented in primary care, but only partially (58%) in a rehabilitation setting. Advice to reduce the amount of PT was implemented in only 15% of the cases. Possible barriers were related to the advice itself (feasibility of treatment duration, correctness and completeness), the patient (motivation) and the professional (experience in treatment of NMDs). Therapists expressed a desire to have the opportunity to discuss the treatment advice with the multidisciplinary team. CONCLUSIONS: The extent to which multidisciplinary advice was implemented differed for OT and ST compared to PT and for the setting (primary care or rehabilitation). Possible barriers were identified at different levels. We recommend follow-up telephone calls to provide therapists opportunity for discussion.

Contains fulltext : 81577.pdf (Publisher’s version ) (Closed access) BACKGROUND AND PURPOSE: To report the predictive validity of the perceived limitations in activities and need questionnaire (PLAN-Q), a screening instrument to support neurologists to select patients with neuromuscular disorders (NMD) for referral for a one-off consultation by occupational therapist (OT), physical therapist (PT) and speech therapist (ST). METHODS: In a cross-sectional validation study, 102 patients with various NMD participated. Patients received a one-off consultation by an expert OT, PT and ST and filled out the PLAN-Q. Therapists rated the appropriateness of the one-off consultations based on need, available treatment and patient's motivation. Receiver Operation Characteristic analysis and multivariate logistic regression analysis were used to obtain a PLAN-Q based prediction model for the appropriateness of the one-off consultations. RESULTS: Probability for a one-off OT consultation increased from 64% to 78% (95% CI: 69-85%). Prior test probability for a one-off ST consultation increased from 44% to 61% (95% CI: 48-73%). Prior test probability for one-off PT consultation could not be increased. CONCLUSION: Screening patients with NMD using the PLAN-Q may assist neurologists in selecting the appropriate patients for a one-off consultation by OT and ST. Unlike our expectations the screening did not guide referral for a one-off consultation by PT.

Contains fulltext : 69916.pdf (Publisher’s version ) (Closed access) 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). Its aim is to signal problems and needs of patients with chronic, slowly progressive NMD with a view to referral for one-off consultations by OT, PT and ST. We report on the construct, item pool, response options and the item reduction procedure as the first development stages for the PLAN-Q. METHODS: The International Classification of Functioning, Disability and Health (ICF) served as source for items and response options. Five clinical health professionals of the Neuromuscular Center Nijmegen (NMCN) formed an expert panel. They were asked to reach consensus on construct, item pool and response options. Subsequently a sample of patients with NMD (n=21) that attended the NMCN was asked for their approval of the concept questionnaire. Data of a large cohort (n=208) of patients with a broad variety of chronic NMD were used to carry out item reduction. RESULTS: The expert panel reached consensus on the selection of 56 items covering eight activity categories relevant to OT, PT, and ST. They also reached consensus on response options regarding 'capacity' and 'need for therapy or advice'. The patient sample approved the concept PLAN-Q. The item reduction procedure resulted in a reduction to 25 items covering eight activity categories. CONCLUSION: The PLAN-Q has proceeded through the first stages of development and is now ready for further assessment of reliability and validity.

Contains fulltext : 53667.pdf (Publisher’s version ) (Closed access) 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. INTERVENTION: Multidisciplinary assessments consisted of a single consultation by OT, PT and ST each, followed by a multidisciplinary meeting and integrated advice. OUTCOME VARIABLES: Volume (frequency times duration) of therapy, relative over- and underuse of therapy and costs of therapy and intervention. RESULTS: Compared to the multidisciplinary advice, there was 40% underuse of OT among patients with neuromuscular disease. For PT, there was 32% overuse and 22% underuse; for ST, there was neither over- nor underuse. Some 40% of patients received once-only advice regarding ST compared to 27% regarding OT and 19% regarding PT. The costs of the multidisciplinary advice were estimated at euro245 per patient. If fully implemented, our multidisciplinary approach would result in a mean cost savings of euro85.20 per patient. The recommended therapy had, however, been implemented only partially at 6 months follow-up. CONCLUSIONS: Some patients with a neuromuscular disease do not receive any form of allied healthcare, whereas they should. Among patients with neuromuscular disease who do receive some form of allied healthcare, quite a few receive these treatments for too long periods of time. Ways need to be developed to improve implementation of the multidisciplinary advice and to obtain a more favourable balance between its costs and benefits.

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. The PDMS-FM-2 results were compared with scores on the Movement Assessment Battery for Children (M-ABC). In addition, the scores of the children with and without fine motor problems were compared. For the test-retest reliability and the inter-rater reliability, correlation coefficients varied from r = 0.84 to r = 0.99. These results suggest that PDMS-FM-2 has excellent test-retest and inter-rater reliability. Convergent validity with the fine motor section of the M-ABC and discriminant validity have been confirmed. Only 39% of the children in the group with problems in fine motor activities had fine motor problems according to the PDMS-FM-2. This finding seems to indicate that the PDMS-FM-2 may not be sensitive enough for this population.

Purpose: To construct a questionnaire to measure skills in which notably both hands are active, which is suitable for patients with a disease of one or both hands and to research its response stability and possible improvements. Method: Using the Dutch elaboration of the ICIDH and then experts in a Delphi round, the questionnaire was constructed. Thereafter, test-retest and inter-observer reliability was examined. Fifty-four patients with RSD in one upper extremity and a normal contralateral extremity participated in the study, the first twenty to evaluate the construction of the questionnaire and the others to test reliability. Results: The constructed Radboud skills questionnaire was reliable in terms of response stability (median coefficients of variation 2.2% to 6.6%). Correlation's between categories of items were fair to good. Conclusions: A useful questionnaire was constructed to map alterations in the level of disability in patients with a disease of one hand or both hands.