A stroke is a clinically defined syndrome of rapidly developing symptoms or signs of focal loss o... more A stroke is a clinically defined syndrome of rapidly developing symptoms or signs of focal loss of cerebral function with no apparent cause other than that of vascular origin. The syndrome varies in severity from recovery in a day to incomplete recovery, severe disability and death (Warlow 1996). Neurological symptoms can vary widely and can result in sensory-motor, cognitive (such as apraxia and agnosia) and psycho-social impairments. Especially the cognitive symptoms are important determinants for functional recovery (Hochstenbach 2000). In the Netherlands, approximately 170 of each 100,000 persons suffer from a stroke each year. Thirty-five percent of the patients are not able to perform self-care activities after one year (Limburg 2000).
Background and Purpose-Occupational therapy (OT) is an important aspect of stroke rehabilitation.... more 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.
Introduction Early evaluation of writing readiness is essential to predict and prevent handwritin... more 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.
disease registry was set up to obtain observational safety and efficacy data on the treatment of ... more disease registry was set up to obtain observational safety and efficacy data on the treatment of LEMS over time. All patients with a confirmed diagnosis of LEMS disease who provided consent were eligible to participate. Besides efficacy and safety measures, the registry collected data on a patient's Quantitative myasthenia gravis (QMG) score, and quality of life using the EuroQol 5DTM (EQ-5D-5L) tool. This analysis examines the relationship between QMG score and the EQ-5D-5L. A quantitative analysis, using descriptive statistics, correlation analysis, and regression analysis was conducted. Currently there are 103 patients enrolled (52% males) with an average duration of participation ranging from newly enrolled up to 63.4 months. Twenty-seven of 103 patients (26%) were diagnosed with an associated carcinoma. The majority of patients (72%) were receiving Firdapse®. Preliminary analysis show there is a significant inverse relationship between QMG and EQ-5D-5L (R =-0.322, 95%CI:-0.408,-0.230, p < 0.0001) which may lead to an improvement in quality of life. All but four domains of the QMG Score were significantly correlated with EQ-5D-5L scores. Further analysis of factors influencing Total QMG and EQ-5D-5L will be presented.
Background: To retard shortening of finger flexors in patients with Duchenne muscular dystrophy (... more 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.
AimTo study long‐term disease course for females with early‐onset dystrophinopathy, including com... more AimTo 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.MethodTwelve females with early‐onset dystrophinopathy were followed for a median period of more than 17 years (range 1–36).ResultsOne 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...
ObjectivesTo report the recovery of patients receiving primary allied healthcare after a COVID-19... more ObjectivesTo report the recovery of patients receiving primary allied healthcare after a COVID-19 infection at a six-month follow-up, and to explore which patient characteristics are associated with the changes in outcomes between the baseline and six-month follow-up.DesignProspective cohort study.SettingAllied healthcare in Dutch primary care.Participants1,452 adult patients recovering from COVID-19 and receiving treatment from one or more primary care allied health professional(s) (i.e., dietitian, exercise therapist, occupational therapist, physical therapist and/or speech and language therapist).ResultsFor participation (USER-P range 0 to 100), estimated mean differences of at least 2.3 points were observed after six months. For HRQoL (EQ-VAS range 0 to 100), the mean increase was 12.31 at six months. Furthermore, significant improvements were found for fatigue (FSS range 1 to 7): the mean decrease was –0.7 at six months. For physical functioning (PROMIS-PF range 13.8 to 61.3), ...
Objective: To report the study protocol and baseline characteristics of a prospective cohort stud... more Objective: To report the study protocol and baseline characteristics of a prospective cohort study to evaluate longitudinal recovery trajectories of patients recovering from COVID-19 who have visited a primary care allied health professional.Design: Prospective cohort study with a mixed-methods approach.Patients: Patients recovering from COVID-19 treated by primary care dietitians, exercise therapists, occupational therapists, physical therapists and/or speech and language therapists in the Netherlands.Methods: The prospective study will measure primary outcome domains: participation, health-related quality of life, fatigue, physical functioning, and costs, at baseline, 3, 6, 9 and 12 months. Interviews, on the patients’ experiences with allied healthcare, will be held with a subsample of patients and allied health professionals.Results: The cohort comprises 1,451 patients (57% female, mean age 49 (standard deviation 13) years). Preliminary results for the study cohort show that 974...
Introduction/AimsAs life expectancy improves for patients with Duchenne muscular dystrophy (DMD),... more Introduction/AimsAs 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.MethodsA 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.ResultsEighty‐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%). Prev...
A stroke is a clinically defined syndrome of rapidly developing symptoms or signs of focal loss o... more A stroke is a clinically defined syndrome of rapidly developing symptoms or signs of focal loss of cerebral function with no apparent cause other than that of vascular origin. The syndrome varies in severity from recovery in a day to incomplete recovery, severe disability and death (Warlow 1996). Neurological symptoms can vary widely and can result in sensory-motor, cognitive (such as apraxia and agnosia) and psycho-social impairments. Especially the cognitive symptoms are important determinants for functional recovery (Hochstenbach 2000). In the Netherlands, approximately 170 of each 100,000 persons suffer from a stroke each year. Thirty-five percent of the patients are not able to perform self-care activities after one year (Limburg 2000).
Background and Purpose-Occupational therapy (OT) is an important aspect of stroke rehabilitation.... more 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.
Introduction Early evaluation of writing readiness is essential to predict and prevent handwritin... more 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.
disease registry was set up to obtain observational safety and efficacy data on the treatment of ... more disease registry was set up to obtain observational safety and efficacy data on the treatment of LEMS over time. All patients with a confirmed diagnosis of LEMS disease who provided consent were eligible to participate. Besides efficacy and safety measures, the registry collected data on a patient's Quantitative myasthenia gravis (QMG) score, and quality of life using the EuroQol 5DTM (EQ-5D-5L) tool. This analysis examines the relationship between QMG score and the EQ-5D-5L. A quantitative analysis, using descriptive statistics, correlation analysis, and regression analysis was conducted. Currently there are 103 patients enrolled (52% males) with an average duration of participation ranging from newly enrolled up to 63.4 months. Twenty-seven of 103 patients (26%) were diagnosed with an associated carcinoma. The majority of patients (72%) were receiving Firdapse®. Preliminary analysis show there is a significant inverse relationship between QMG and EQ-5D-5L (R =-0.322, 95%CI:-0.408,-0.230, p < 0.0001) which may lead to an improvement in quality of life. All but four domains of the QMG Score were significantly correlated with EQ-5D-5L scores. Further analysis of factors influencing Total QMG and EQ-5D-5L will be presented.
Background: To retard shortening of finger flexors in patients with Duchenne muscular dystrophy (... more 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.
AimTo study long‐term disease course for females with early‐onset dystrophinopathy, including com... more AimTo 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.MethodTwelve females with early‐onset dystrophinopathy were followed for a median period of more than 17 years (range 1–36).ResultsOne 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...
ObjectivesTo report the recovery of patients receiving primary allied healthcare after a COVID-19... more ObjectivesTo report the recovery of patients receiving primary allied healthcare after a COVID-19 infection at a six-month follow-up, and to explore which patient characteristics are associated with the changes in outcomes between the baseline and six-month follow-up.DesignProspective cohort study.SettingAllied healthcare in Dutch primary care.Participants1,452 adult patients recovering from COVID-19 and receiving treatment from one or more primary care allied health professional(s) (i.e., dietitian, exercise therapist, occupational therapist, physical therapist and/or speech and language therapist).ResultsFor participation (USER-P range 0 to 100), estimated mean differences of at least 2.3 points were observed after six months. For HRQoL (EQ-VAS range 0 to 100), the mean increase was 12.31 at six months. Furthermore, significant improvements were found for fatigue (FSS range 1 to 7): the mean decrease was –0.7 at six months. For physical functioning (PROMIS-PF range 13.8 to 61.3), ...
Objective: To report the study protocol and baseline characteristics of a prospective cohort stud... more Objective: To report the study protocol and baseline characteristics of a prospective cohort study to evaluate longitudinal recovery trajectories of patients recovering from COVID-19 who have visited a primary care allied health professional.Design: Prospective cohort study with a mixed-methods approach.Patients: Patients recovering from COVID-19 treated by primary care dietitians, exercise therapists, occupational therapists, physical therapists and/or speech and language therapists in the Netherlands.Methods: The prospective study will measure primary outcome domains: participation, health-related quality of life, fatigue, physical functioning, and costs, at baseline, 3, 6, 9 and 12 months. Interviews, on the patients’ experiences with allied healthcare, will be held with a subsample of patients and allied health professionals.Results: The cohort comprises 1,451 patients (57% female, mean age 49 (standard deviation 13) years). Preliminary results for the study cohort show that 974...
Introduction/AimsAs life expectancy improves for patients with Duchenne muscular dystrophy (DMD),... more Introduction/AimsAs 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.MethodsA 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.ResultsEighty‐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%). Prev...
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