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BackgroundNeuralgic amyotrophy (NA) is an acute inflammation of nerves within the brachial plexus territory leading to severe pain and multifocal paresis resulting in >60% of patients having residual complaints and functional limitations correlated with scapular dyskinesia. Our primary aim was to compare the effects of multidisciplinary rehabilitation (MR), focused on motor relearning to improve scapular dyskinesia and self-management strategies for reducing pain and fatigue, with usual care (UC) on shoulder, arm and hand functional capability in patients with NA.MethodsIn a non-blinded randomised controlled trial (RCT), patients with NA (aged≥18 years, scapular dyskinesia, >8 weeks after onset) were randomised to either an MR or an UC group. MR consisted of a diagnostic multidisciplinary consultation and eight sessions of physical and occupational therapy. Primary outcome was functional capability of the shoulder, arm and hand assessed with the Shoulder Rating Questionnaire–Dutch Language Version (SRQ-DLV).ResultsWe included 47 patients with NA; due to drop-out, there were 22 participants in MR and 15 in UC for primary analysis. The mean group difference adjusted for sex, age and SRQ-DLV baseline score was 8.60 (95%CI: 0.26 to 16.94, p=0.044). The proportion attaining a minimal clinically relevant SRQ-DLV improvement (≥12) was larger for the MR group (59%) than the UC group (33%) with a number needed to treat of 4.ConclusionThis RCT shows that an MR programme focused on motor relearning to improve scapular dyskinesia, combined with self-management strategies for reducing pain and fatigue, shows more beneficial effects on shoulder, arm and hand functional capability than UC in patients with NA.Trial registration numberNCT03441347.

Contains fulltext : 294518.pdf (Publisher’s version ) (Open Access) AIM: To study long-term disease course for females with early-onset dystrophinopathy, including common (female) symptoms, challenges in social participation, the need for care, and current healthcare management to support guideline development. METHOD: Twelve females with early-onset dystrophinopathy were followed for a median period of more than 17 years (range 1-36). RESULTS: One patient died owing to end-stage cardiac failure. Cardiac abnormalities were observed in three of the remaining 11 participants. Respiratory function was reduced in seven of 10 participants. Fatigue, myalgia, lower back pain, and arthralgia were reported in more than six of the participants. Functional status varied from exercise intolerance to wheelchair dependency. Most or all of the 10 participants reported restrictions in participation in work (n = 10), household duties (n = 10), sports (n = 9), and education (n = 8). Only a few participants received followed-up pulmonary (n = 2) or rehabilitation (n = 3) care. INTERPRETATION: Females with early-onset dystrophinopathy experience a wide range of impairments, comorbidities, limitations in activities, and restrictions in social participation. The whole spectrum should be acknowledged in the healthcare setting. Neuromuscular and cardiac follow-up are indispensable. Additional respiratory assessment and rehabilitation care are expected to improve health status and support daily activities and participation. WHAT THIS PAPER ADDS: No standard diagnostic procedures seem to exist for female patients suspected for dystrophinopathy. Female participants with early-onset dystrophinopathy experienced a broad scope of burdening symptoms, such as fatigue, myalgia, lower back pain, and arthralgia. None of participants worked full time, all felt restricted in paid work, and most felt restricted in education. Most participants showed decreased lung function, while only one was symptomatic. Availability of rehabilitation care may improve support for daily activities and participation for females with early-onset dystrophinopathy. 01 augustus 2023

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

This study focuses on the functional and psychosocial consequences of facial weakness of patients with facioscapulohumeral muscular dystrophy (FSHD) and how they manage their daily lives. We conducted a qualitative study. Sixteen FSHD patients with varying degrees of facial weakness were interviewed using a semi-structured interview guide. Data were analyzed using the constant comparison approach based on the Straussian Grounded Theory. Reduced facial expression affected different aspects of a participant’s life, which is reinforced by fatigue. Particularly the younger participants described the confrontation with reduced facial expression as upsetting. The unpredictability of the progression of facial weakness makes many participants insecure and concerned. They generally tend to avoid discussing facial weakness with loved ones as well as with strangers. Patients would like the expert teams to shed more light on effective skill training and psychosocial support, especially for the younger patient group. A multidisciplinary approach is needed in addition to programs focusing on the individual aspects of facial weakness. As the experienced psychosocial effect is not commonly equal to the objective degree of facial weakness, we recommend a tailored approach. Finally, these programs should point out the importance of the patient’s own ingenuity.Implications for RehabilitationFacial weakness affects both activities and social participation in patients with facioscapulohumeral muscular dystrophy (FSHD), which is reinforced by fatigue.Many participants try to stay down to earth and focus on their ability to self-manage their obstacles regarding facial weakness.Thus, future treatment programs should have a multidisciplinary approach and should point out the importance of the patient’s own ingenuity. Facial weakness affects both activities and social participation in patients with facioscapulohumeral muscular dystrophy (FSHD), which is reinforced by fatigue. Many participants try to stay down to earth and focus on their ability to self-manage their obstacles regarding facial weakness. Thus, future treatment programs should have a multidisciplinary approach and should point out the importance of the patient’s own ingenuity.

ObjectiveTo 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.DesignA mixed method study alongside a randomised controlled trial.SettingUniversity hospital, rehabilitation centre and community health centre.Participants29 patients with a neuromuscular disease and chronic fatigue and 13 healthcare professionals participated in this mixed methods study.InterventionMultidisciplinary group programme, called Energetic, consisted of a 4 months intervention with weekly meetings and covered 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.Main measuresQuantitative data were collected by a questionnaire measuring patients’ (n=25, all completed the programme) satisfaction with the perceived results, content and delivery of the programme. Qualitative data were collected by individual and focus group interviews to gain insight in the experiences of patients (n=18), next of kin (n=2) and healthcare professionals (n=13) with facilitators and barriers to programme implementation.ResultsPatients were satisfied with the number and length of the sessions, the different modules and the therapists. Analysis of the interviews led to five themes: (1) the combination of modules makes a complete picture, (2) the programme is physically and mentally intensive, (3) the group setting is valuable, (4) small variations in delivery occur in different settings, (5) therapists are coaches. Suggestions for programme improvement include a combination of face to face and e-health, enhancement of therapists’ skills in guiding group interventions and inclusion of more booster sessions to evaluate and maintain self-management competencies.ConclusionsThe Energetic programme could be implemented in different healthcare settings and group settings, and a combination of modules proved to be a facilitator for improving self-management.Trial registration numberNCT02208687.

Purpose: To develop and evaluate an interdisciplinary group intervention for patients with myotonic dystrophy regarding healthy nutrition, meal preparation, and consumption, called Meet and Eat. Materials and methods: A design-based approach was used, exploring experiences and needs of patients with myotonic dystrophy and their next of kin. This resulted in a 4-week interdisciplinary outpatient group intervention to increase awareness and change behavior. In a mixed-method feasibility study this intervention was evaluated with participants and facilitators. Results: Participants reported on social impact of difficulties with eating and drinking (speaking, swallowing, and social embarrassment) and a variety of complaints affecting meal preparation and consumption. Patients and family members expressed the wish to learn from others. After delivery of the intervention, self-reported outcome measures demonstrated improvement on eating and drinking issues in daily life. The qualitative evaluation showed increased awareness and appreciation of the following design principles: peer support, multidisciplinary approach, active involvement of patient with myotonic dystrophy and their next of kin by using personal goals and motivational interviewing. Conclusion: Participation in Meet and Eat seemed to increase insight in patients’ condition and ways of management. However, a longer self-management life style program is recommended to change behavior.Implications for rehabilitation Patients with myotonic dystrophy experience physical, cognitive and psychosocial problems to manage healthy nutrition, meal preparation, and consumption; This multidisciplinary group intervention Meet and Eat in patients with myotonic dystrophy appears to be feasible and seems to result in increased insight and management strategies; Peer support, multidisciplinary approach, personal goals, and involvement of family were key factors; To change eating and drinking behavior, a 4-week intervention is too short.

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.

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.

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.

Purpose of review: Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects between 1 in 3,000 and 8,000 individuals globally. No evidence-based guideline exists to inform the care of these patients, and most do not have access to multidisciplinary care centers staffed by experienced professionals, creating a clinical care deficit.\ud \ud Recent findings: The Myotonic Dystrophy Foundation (MDF) recruited 66 international clinicians experienced in DM1 patient care to develop consensus-based care recommendations. MDF created a 2-step methodology for the project using elements of the Single Text Procedure and the Nominal Group Technique. The process generated a 4-page Quick Reference Guide and a comprehensive, 55-page document that provides clinical care recommendations for 19 discrete body systems and/or care considerations.\ud \ud Summary: The resulting recommendations are intended to help standardize and elevate care for this patient population and reduce variability in clinical trial and study environments.\ud \ud Described as “one of the more variable diseases found in medicine,” myotonic dystrophy type 1 (DM1) is an autosomal dominant, triplet-repeat expansion disorder that affects somewhere between 1:3,000 and 1:8,000 individuals worldwide.1 There is a modest association between increased repeat expansion and disease severity, as evidenced by the average age of onset and overall morbidity of the condition. An expansion of over 35 repeats typically indicates an unstable and expanding mutation. An expansion of 50 repeats or higher is consistent with a diagnosis of DM1. DM1 is a multisystem and heterogeneous disease characterized by distal weakness, atrophy, and myotonia, as well as symptoms in the heart, brain, gastrointestinal tract, endocrine, and respiratory systems. Symptoms may occur at any age. The severity of the condition varies widely among affected individuals, even among members of the same family.\ud \ud Comprehensive evidence-based guidelines do not currently exist to guide the treatment of DM1 patients. As a result, the international patient community reports varied levels of care and care quality, and difficulty accessing care adequate to manage their symptoms, unless they have access to multidisciplinary neuromuscular clinics.\ud \ud Consensus-based care recommendations can help standardize and improve the quality of care received by DM1 patients and assist clinicians who may not be familiar with the significant variability, range of symptoms, and severity of the disease. Care recommendations can also improve the landscape for clinical trial success by eliminating some of the inconsistencies in patient care to allow more accurate understanding of the benefit of potential therapies.

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.

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.

Objectives Well-coordinated multidisciplinary non-pharmacological care is considered to be a cornerstone in the management of patients with systemic sclerosis. However, it has been discovered that unmet information and health care needs are common in patients with SSc. In addition, referrals by rheumatologists do not always correspond with potential treatment goals as identified by health professionals. The aim of this study was to gain insight into the current referral routine of rheumatologists in SSc patients and to identify and explore factors influencing rheumatologists’ decisions about referral of SSc patients to health professionals. Methods Qualitative semi-structured interviews were held with 13 rheumatologists specializing in SSc management from different hospitals in The Netherlands. Results Our study identified rheumatologists’ beliefs and local policy as influencing factors for referral to health professionals and a clear need for a better referral policy. Furthermore, a lack of knowledge about and low confidence in the competence of other disciplines were identified as barriers for referral to health professionals, which may possibly lead to undertreatment. Conclusion In the opinion of the majority of rheumatologists, adequate referral to health professionals requires an active role for the patient and increased visibility from health professionals.

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.

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(TM)VMI) and the Nine-Hole Peg Test (9-HPT). The WRITIC evaluates in kindergarten children (aged 5-6 years) prewriting skills, the Beeryll(TM)VMI and 9-HPT evaluate visual motor integration and fine-motor coordination, all elements important for handwriting readiness. In kindergarten, 109 children (55 boys; mean age 70 months, SD 4.8 months) were tested with the WRITIC, Beery(TM)VMI and 9-HPT and one year later in first grade (mean age 85 months, SD 4.5 months) with the SOS. A multivariable linear mixed model was used to identify variables that independently predict outcomes in first grade (SOS): baseline scores on WRITIC-TP, Beery(TM)VMI, 9-HPT, 'sustained attention,' gender,'age' and 'intervention' in the intermediate period. The results showed that WRITIC-TP, Beery(TM)VMI, and 9-HPT, 'sustained attention,' gender' and 'intervention' had all predictive value on the handwriting outcome. Thereby WRITIC-TP was the main predictor for outcome of SOS-Quality, and Beery(TM)VMI and 9-HPT were the main predictors of SOS-Speed. This kindergarten assessment of WRITIC-TP, Beery(TM)VMI, and 9-HPT contributes to the detection of children at risk for developing handwriting problems. (C) 2014 Elsevier Ltd. 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.

Background Well-coordinated multidisciplinary non-pharmacological care is considered to be a cornerstone in the management of patients with systemic sclerosis (SSc). However, unmet information and healthcare needs are found to be common in patients with SSc [1]. In addition, referrals by rheumatologists9 do not always correspond with potential treatment goals as identified by health professionals (HP)[2]. Objectives The aim of this study was to gain insight in the perspective of rheumatologists about the referral process of SSc patients to non-pharmacological care and to identify starting points for its optimisation. Methods Semi structured in-depth interviews were held with 13 out of 24 rheumatologists, specialised in SSc management, from different Dutch university and regional medical centres. The qualitative data analysis used an inductive thematic analysis by moving through a process of coding in layers of abstraction and interpretation: familiarization with data, generating initial codes, grouping similar codes in categories, discussing categories, searching for themes among categories, reviewing themes, defining and naming themes, and producing the final report. Results One major theme was identified as influencing decision making: “beliefs” and its three sub themes: a) beliefs about one9s own professional role; b) beliefs about the patients9 ability to take an active role in managing the disease and c) beliefs about the added value of non-pharmacological care. We also found an additional theme reflecting the “needs” of the rheumatologists regarding professional multidisciplinary collaboration (Figure 1). Another remarkable finding to be further explored was the discrepancy we found between the reliance of rheumatologists on established routines with regard to when and to whom to refer and the low confidence in HPs competencies on the other hand. Conclusions The results of our study give insight that rheumatologists base their referral decisions on complex reasoning mindlines and beliefs about their own professional role, the patient9s role and HP competencies. References Willems, L. M., Kwakkenbos, L., Leite, C. C., Thombs, B. D., van den Hoogen, F. J., Maia, A. C., & van den Ende, C. M. (2014). Frequency and impact of disease symptoms experienced by patients with systemic sclerosis from five European countries. Clinical And Experimental Rheumatology, 32(6 Suppl 86), S-88–93. Schouffoer, A., Zirkzee, E., Henquet, S., Caljouw, M., Steup-Beekman, G., Laar, J., & Vlieland, T. (2011). Needs and preferences regarding health care delivery as perceived by patients with systemic sclerosis. Clinical Rheumatology, 30(6), 815–824. doi:10.1007/s10067–010–1645–6. Disclosure of Interest None declared

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.

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. Study Selection: Qualitative studies reporting the views of people poststroke. The search yielded 494 records. Opinion articles, quantitative studies, or those reporting somatic functioning were excluded. Thirty-three studies were included. Data Extraction: Data extraction involved identifying all text presented as "results" or "findings" in the included studies, and importing this into software for the analysis of qualitative data. Data Synthesis: The abstracted text was coded and then subject to a thematic analysis and synthesis, which was discussed and agreed by the research team. Three overarching themes were identified: (1) managing discontinuity is a struggle; (2) regaining roles: to continue or adapt? and (3) context influences management of roles and self. Regaining valued roles and self was an ongoing struggle, and discontinuity and uncertainty were central to the adjustment process after stroke. Conclusions: The thematic synthesis provides new insights into the poststroke experience. Regaining or developing a new self and roles was problematic. Interventions targeted at self-management should be focused on the recognition of this problem and included in rehabilitation, to facilitate adjustment and continuity as far as possible in life poststroke. (C) 2013 by the American Congress of Rehabilitation Medicine

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.

A systematic review was conducted to assess the evidence base of occupational therapy for adults with neuromuscular diseases. A comprehensive search for controlled and uncontrolled studies was performed in the Cochrane, MEDLINE, CINHAL, and EMBASE databases. After screening 3,534 titles and abstracts, six articles were retrieved for more detailed evaluation. Only two studies met all of the predefined criteria and were subjected to methodological assessment. These studies provide indications for the efficacy of hand training in muscle diseases. There is a lack of scientific evidence regarding the question of whether patients with neuromuscular diseases are better capable of participating in meaningful activities and roles through occupational therapy. Recommendations for future research are given.

Item does not contain fulltext 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. RESULTS: 247 publications were screened, of which 16 fulfilled the selection criteria. Most studies used manual muscle testing (MMT) to evaluate UE function and the Brooke Scale to evaluate UE mobility activities. The clinical picture of UE impairments and limitations of UE activities in FSHD and LGMD patients was highly variable. In general, FSHD and LGMD patients experience difficulty elevating their upper extremities and the execution of tasks takes considerably longer time. CONCLUSIONS: The clinical course of UE impairments and activity limitations associated with FSHD and LGMD is difficult to predict due to its high variability. Although measures like MMT and the Brooke Scale are often used, there is a lack of more specific outcome measures to assess UE function and UE capacity and performance in daily life. Measures such as 3D motion analysis and electromyography (EMG) recordings are recommended to provide additional insight in UE function. Questionnaires like the Abilhand are recommended to assess UE capacity and accelerometry to assess UE performance in daily life. IMPLICATIONS FOR REHABILITATION: There is a need for specific outcome measures on the level of UE activity. Both the level of capacity and performance should be assessed. Possible outcome measures include 3D motion analysis to assess UE function, questionnaires like the Abilhand to assess UE capacity and accelerometry to assess performance of UE activities in daily life.

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.

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. Studies with controlled and uncontrolled designs were included. Seven intervention categories were distinguished and separately analyzed. If a quantitative approach (meta-analysis) of data analysis was not appropriate, a qualitative approach (best-evidence synthesis), based on the type of design, methodological quality, and significant findings of outcome and/or process measures, was performed. Results— Thirty-two studies were included in this review, of which 18 were randomized controlled trials. Ten randomized controlled trials had a high methodological quality. For the comprehensive OT intervention, the pooled standardized mean difference for primary activities of daily living (ADL) (0.46; CI, 0.04 to 0.88), extended ADL (0.32; CI, 0.00 to 0.64), and social participation (0.33; CI, 0.03 to 0.62) favored treatment. For the training of skills intervention, some evidence for improvement in primary ADL was found. Insufficient evidence was found to indicate that the provision of splints is effective in decreasing muscle tone. Conclusions— This review identified small but significant effect sizes for the efficacy of comprehensive OT on primary ADL, extended ADL, and social participation. These results correspond to the outcome of a systematic review of intensified rehabilitation for stroke patients. The amount of evidence with respect to specific interventions, however, is limited. More research is needed to enable evidence-based OT for stroke patients.

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.

BackgroundExercise interventions are often incompletely described in reports of clinical trials, hampering evaluation of results and replication and implementation into practice.ObjectiveThe aim of this study was to develop a standardized method for reporting exercise programs in clinical trials: the Consensus on Exercise Reporting Template (CERT).Design and MethodsUsing the EQUATOR Network's methodological framework, 137 exercise experts were invited to participate in a Delphi consensus study. A list of 41 items was identified from a meta-epidemiologic study of 73 systematic reviews of exercise. For each item, participants indicated agreement on an 11-point rating scale. Consensus for item inclusion was defined a priori as greater than 70% agreement of respondents rating an item 7 or above. Three sequential rounds of anonymous online questionnaires and a Delphi workshop were used.ResultsThere were 57 (response rate=42%), 54 (response rate=95%), and 49 (response rate=91%) respondents to rounds 1 through 3, respectively, from 11 countries and a range of disciplines. In round 1, 2 items were excluded; 24 items reached consensus for inclusion (8 items accepted in original format), and 16 items were revised in response to participant suggestions. Of 14 items in round 2, 3 were excluded, 11 reached consensus for inclusion (4 items accepted in original format), and 7 were reworded. Sixteen items were included in round 3, and all items reached greater than 70% consensus for inclusion.LimitationsThe views of included Delphi panelists may differ from those of experts who declined participation and may not fully represent the views of all exercise experts.ConclusionsThe CERT, a 16-item checklist developed by an international panel of exercise experts, is designed to improve the reporting of exercise programs in all evaluative study designs and contains 7 categories: materials, provider, delivery, location, dosage, tailoring, and compliance. The CERT will encourage transparency, improve trial interpretation and replication, and facilitate implementation of effective exercise interventions into practice.

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.

Purpose: A systematic review was conducted to summarize and evaluate the literature on the effectiveness of speech pathology interventions in adults with neuromuscular diseases. Method: Databases searched included the Cochrane Database of Systematic Reviews, the Cochrane Central Register of Controlled Trials, MEDLINE, CINAHL, EMBASE, PsycINFO and PubMed. A total of 1,772 articles were independently screened on title and abstract by 2 reviewers. Results: No randomized controlled trials or clinical controlled trials were found. Four other designs were included. Only one study on oculopharyngeal muscle dystrophy (OPMD) appeared to have sufficient methodological quality. There is evidence indicating that correction of head position in patients with OPMD improves swallowing efficiency (level III evidence). Conclusion: Despite 1,772 studies, there is only evidence of level III regarding the effectiveness of speech pathology interventions in patients with OPMD. Recommendations for future research are given.

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.

Neuralgische amyotrofie (NA) is een aandoening (spontane ontsteking) van het perifere zenuwstelsel, meestal van de plexus brachialis. NA wordt gekenmerkt door een aanval van zeer hevige pijn in de schouder en/of arm, die na uren tot dagen wordt gevolgd door een vlekkige parese** met vaak opvallende atrofie van de betrokken spieren.