J.M.A. Visser-Meily

• MD, PhD
• Head of Department at University Medical Center Utrecht

Development of RISE, a blended behavioral intervention to support people to reduce and interrupt their sedentary behavior.

Background: Several Patient Reported Outcome Measurements (PROMs) can be used to quantify participation in rehabilitation patients, yet there is limited comparative research on their content and psychometric properties to make an informed decision between them. Objective: To compare the content and several psychometric properties of the Restrict...

Purpose: The aims of this study were to explore (1) the considerations of people with spinal cord injury (SCI) in choosing to use non-pharmacological treatments (N-PTs) for neuropathic pain (NP), (2) which factors influence their decision and who is involved in this choice. Materials and methods: Eleven individuals with SCI and NP were interview...

Background Patient Reported Outcomes Measures (PROMs) are being used increasingly to measure health problems in stroke clinical practice. However, the implementation of these PROMs in routine stroke care is still in its infancy. To understand the value of PROMs used in ischemic stroke care, we explored the patients’ experience with PROMs and with t...

Purpose: Sensory hypersensitivity is a frequently reported complaint after acquired brain injury (ABI). This study explores patients' perceptions of sensory hypersensitivity following ABI and its impact on everyday life. Materials and methods: Semi-structured interviews were conducted with 18 patients with ABI (stroke, brain tumour, TBI) who rep...

Wanneer een ouder de diagnose amyotrofische laterale sclerose (ALS), progressieve spinale musculaire atrofie (PSMA) of primaire laterale sclerose (PLS) (hierna samen aangeduid met ALS) krijgt, heeft dit een grote impact op het ouderschap en gezinsleven. Ouders hebben behoefte om hier over te praten, maar ook om advies te krijgen hoe zij hun kindere...

Background To improve the care for patients with motor neuron disease an e-health innovation for continuous monitoring of disease progression and patients’ well-being (ALS H&C) was implemented in 10 multidisciplinary rehabilitation settings. The first aim was to evaluate the implementation of ALS H&C by assessing several implementation outcomes, te...

(1) Background: This study aimed to investigate two-year societal costs and generic health-related quality of life (QoL) using a bottom-up approach for the Restore4Stroke Cohort. (2) Methods: Adult post-stroke patients were recruited from stroke units throughout the Netherlands. The societal costs were calculated for healthcare and non-healthcare c...

Purpose: To develop and explore underlying dimensions of the Self-Regulation Assessment (SeRA) and psychometric features of potential components. Further, to identify associations between the SeRA and disability-management self-efficacy, type of diagnosis, and type of rehabilitation. Materials and methods: Based on a previously developed model o...

Purpose: Cognitive impairments frequently occur in children and adolescents with acquired brain injury (ABI), causing significant disabilities in daily life. Current paper-and-pencil neuropsychological tests do not capture the complexity of daily life activities, often failing to objectify subtle cognitive impairments. Virtual Reality (VR) simulat...

Many stroke patients and partners suffer from anxiety, depression, and low life satisfaction. Psychological factors such as coping style and self-efficacy can be protective factors within individuals. The close relationship between stroke patients and partners suggests that there may be interdependence in psychological functioning. The aim of this...

Purpose Self-regulation refers to self-management and self-control, with or without disability. Outcomes of rehabilitation with respect to self-regulation are unclear. This study aims to identify elements of self-regulation that former patients consider important in the context of medical rehabilitation. Materials and methods Qualitative explorati...

As we become familiar with an environment through navigation and map study, spatial information is encoded into a mental representation of space. It is currently unclear to what degree mental representations of space are determined by the perspective in which spatial information is acquired. The overlapping model of spatial knowledge argues that sp...

In adults with neuromuscular conditions illness perceptions show a strong relation with QoL. For young patients, illness perceptions are shaped through interaction with their parents. A shared perception between child and parent may benefit the child’s QoL. This study investigated agreement in illness perceptions of children with Spinal Muscular At...

The ability to travel independently is a vital part of an autonomous life. It is important to investigate to what degree people with acquired brain injuries (ABI) suffer from navigation impairments. The aim of this study was to investigate the prevalence and characteristics of objective and subjective navigation impairments in the population of ABI...

Objectives To determine differences in participation problems between diagnostic groups and to examine diagnosis as a determinant of participation with and without statistically accounting for confounders. Design Secondary analyses of data from eight studies (total 1,735 participants). Setting Community, the Netherlands Participants Diagnostic-g...

Background In the absence of a cure for amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease, treatment consists of symptomatic management by a multidisciplinary healthcare team and is mainly aimed at optimizing patients’ quality of life. Because the course of the disease is often erratic and varies between patients, it is i...

Secundaire preventie na een beroerte is essentieel. Juist mensen die een beroerte hebben gehad hebben een grotere kans op vroegtijdig overlijden, op het krijgen van een nieuw cardiovasculair event, maar ook op functionele achteruitgang. Bewegen kan hierbij een belangrijke preventieve rol spelen.

Background Ischemic stroke patients with a good outcome in terms of motor functioning and communication are likely to be discharged home without further rehabilitation. A significant number of these patients experience cognitive and emotional problems resulting in lower quality of life and decreased participation in society. This paper presents the...

Purpose (1) To explore the course of participation from two months up to four years after stroke, and (2) to examine if adaptive and maladaptive psychological factors and mood measured at two months after stroke are determinants of the course of participation during this period. Materials and methods Prospective cohort study in which 369 individua...

Review of the literature and semi-structured interviews. To explore the possible use of topical analgesics for the treatment of neuropathic pain (NP) in spinal cord injury (SCI). Institute for Neuropathic Pain, Soest, The Netherlands. A review was performed of studies on topical analgesics for SCI-related NP published up to May 2019. In addition, e...

A variety of approaches are currently used to explore the relationship between cognitive functioning and participation after stroke. We aimed to gain insight into the preferred approach to measure cognitive functioning when exploring the association between cognitive functioning and participation in the long term after stroke. In this inception coh...

Objective: To evaluate whether a blended (face-to-face and online) psychosocial support program for caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy (PMA), aimed at enhancing feeling of control over caregiving, reduces psychological distress. Methods: A randomized controlled trial using a wait-list co...

Background and purpose The aim of this study is to investigate changes in movement behaviors, sedentary behavior and physical activity, and to identify potential movement behavior trajectory subgroups within the first two months after discharge from the hospital to the home setting in first-time stroke patients. Methods A total of 140 participants...

Purpose: Youth with physical disabilities have lower psychosocial health and attention compared to their typically developing peers. Recent research has shown positive associations between sports participation and these outcomes. The purpose of the current study was to explore whether a school-based sports program affects psychosocial health and a...

Objective: To investigate participation restrictions and satisfaction with participation in partners of patients with stroke. Design: Cross-sectional study. Setting: Five rehabilitation centers and three hospitals in the Netherlands. Participants: A consecutive sample of 54 partners of patients with stroke. The patients were participating in a mult...

Objective: To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals. Methods: Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messag...

ALS guidelines recommend monitoring hypoventilation symptoms in order to detect reduced respiratory function in patients with MND. Currently little is known about the relationship between hypoventilation symptoms and reduced respiratory function. We aimed to determine which symptoms of hypoventilation are best at detecting reduced respiratory funct...

Background Cerebral ischaemia is thought to be an important determinant of cognitive outcome after aneurysmal subarachnoid haemorrhage (aSAH), but the exact relationship is unclear. We studied the effect of ischaemic brain lesions during clinical course on cognitive outcome 2 months after aSAH. Methods We studied 74 consecutive patients admitted t...

Background: It is questionable whether postures that are regarded as sedentary behavior in able-bodied persons evoke comparable physiological responses in adults with stroke or cerebral palsy (CP). This study aimed to compare metabolic demand and muscle activity in healthy controls, adults with stroke, and adults with CP during sedentary behavior...

Proximal spinal muscular atrophy (SMA) causes severe physical limitations but also has a major impact on the lives of parents. The aim of this study was to investigate participation and mental well-being (burden, emotional distress and satisfaction with participation) of parents of home-living patients with SMA. Caregiver burden was assessed with t...

This poster is about a study on the feasibility of and patients’ experiences with the tailored eHealth ALS care process: "ALS Home-monitoring and Coaching".

Data S1. Measures of cognition.

Data S2. Distribution of cognitive scores.

This presentation is about a study on the feasibility of and patients’ experiences with the tailored eHealth ALS care process: "ALS Home-monitoring and Coaching".

Purpose: To investigate the effects of high-intensity interval training (HIT) on physical fitness and cardiometabolic health in youth with physical disabilities. Methods: For this quasi-experimental study 70 participants were recruited from schools for special education and divided into runners and users of wheelchairs. HIT was performed for 8 w...

Introduction/Background Stroke patients often report navigation problems (29%). Navigation impairments have a profound impact on the quality of life, as patients experience spatial anxiety, limited mobility, and reduced autonomy. Yet, no standardized rehabilitation training is currently available. The aim of this study is to develop a rehabilitatio...

Objective To investigate the effects of a school-based once-a-week sports program on physical fitness, physical activity, and cardiometabolic health in children and adolescents with a physical disability.Methods This controlled clinical trial included 71 children and adolescents from four schools for special education [mean age 13.7 (2.9) years, ra...

Background: In recent decades, improving fitness has become an important goal in rehabilitation medicine in children and adolescents with cerebral palsy (CP). Aims: To compare body mass index (BMI), performance-related fitness, and cardiorespiratory fitness of children with CP measured in 2014 with a comparable sample from 2004. Methods and pro...

Post-stroke navigation complaints are frequent (about 30%) and intervention is possible, but there is no assessment instrument to identify patients with navigation complaints. We therefore studied the clinical validity of the Wayfinding Questionnaire (WQ) in a cross-sectional study with 158 chronic stroke patients and 131 healthy controls. Patients...

Introduction: Visual neglect is a frequent disorder following stroke and is often diagnosed by neuropsychological assessment. However, paper-and-pencil tasks have low predictive value as they lack sensitivity to capture neglect in complex, dynamic situations, such as activities of daily living. Aims of the current study were to assess the feasibil...

Background Evidence supporting the effectiveness of aerobic training, specific for fatigue, in severely fatigued patients with multiple sclerosis (MS) is lacking. Objective To estimate the effectiveness of aerobic training on MS-related fatigue and societal participation in ambulant patients with severe MS-related fatigue. Methods Patients (N = 9...

Background The evidence on the associations of cardiorespiratory fitness, body adiposity and sports participation with arterial stiffness in children and adolescents with chronic diseases or physical disabilities is limited. Methods Altogether 140 children and adolescents with chronic diseases or physical disabilities participated in this cross-se...

Visuo-spatial neglect can occur after both right and left hemisphere damage. It is generally accepted that left-sided neglect is more severe than right-sided neglect with respect to the lateralized attention deficit. In the current study, comparisons were made between left-sided and right-sided neglect with respect to frequency, severity, and regio...

Tijdschrift voor Neuropsychologie Naast conventionele cognitieve tests kunnen dynamische cognitieve tests van toegevoegde waarde zijn bij het bepalen van de cognitieve leermogelijkheden van patiënten met niet-aangeboren hersenletsel (NAH). Een dynamische testprocedure evalueert het effect van een kortdurende training op de cognitieve testprestatie...

Purpose: To identify trajectories of physical and psychosocial health-related quality of life (HRQoL) from two months to one-year post stroke and to determine the factors that are associated with trajectory membership. Method: Multicenter prospective cohort study in which 351 stroke patients were followed up at 2, 6, and 12 months post stroke. Late...

Background: Individuals with spinal cord injury (SCI) have an increased risk of developing urological complications. Therefore, long-Term routine urological surveillance is recommended. Objective: To describe urological surveillance in individuals with longterm SCI and to determine factors associated with urologic ultrasonography (UU) outcome. Meth...

Neglect komt voor bij 30-50% van de patiënten in de subacute fase na een beroerte. Patiënten met neglect verwaarlozen één lichaamshelft of een deel van de ruimte om zich heen. Behandeling van neglect is belangrijk, omdat patiënten met neglect slechter herstellen en minder zelfstandig zijn dan patiënten zonder neglect. Momenteel wordt visuele scanni...

This poster regards returning to work after mild and moderate stroke. It was presented during a two-minute pitch at the yearly symposium of the Stroke Knowledge Network of the Netherlands.

Objectives: To describe the prevalence of secondary health conditions among persons with long-term spinal cord injury, and the relationship between these secondary health conditions and quality of life. Design: Multicentre, cross-sectional study. Subjects: Individuals (n = 282) with traumatic or non-traumatic spinal cord injury for ≥ 10 years,...

Binnen de kinderrevalidatie zijn cerebrale parese (CP) en niet-aangeboren hersenletsel (NAH) de meest voorkomende doelgroepen. In de huidige cognitieve diagnostiek en behandeling wordt gebruikgemaakt van statische methoden die moeilijk generaliseerbaar zijn naar het dynamische dagelijks leven. Een veelbelovende techniek die de mogelijkheid biedt ee...

Thuiswonende CVA-patiënten zullen vooral steun krijgen van hun partners. Vroege identificatie van partners die risico lopen op psychosociale klachten (symptomen van depressie en angst, overbelasting of afgenomen levenstevredenheid) is belangrijk, zodat de zorg daarop afgestemd kan worden. Uit het ReStoRe4Strokecohort werden 215 koppels tijdens ziek...

Objective To systematically identify and appraise evidence on associations between psychological factors (moods, beliefs, personality) and Health-related QoL (HRQoL) and/or global QoL in patients with Amyotrophic Lateral Sclerosis (ALS). Methods A systematic review was conducted in several online databases (PsycINFO, EMBASE, PubMed and CINAHL) up...

Background: Symptoms of anxiety and depression are present in almost half of the patients who survive an aneurysmal subarachnoid hemorrhage (aSAH), but the long-term course is unknown. Aim: To study the longitudinal course and predictors of symptoms of anxiety and depression after aSAH. Methods: Patients visiting our outpatient clinic 3 months...

Background: Most survivors of an aneurysmal subarachnoid hemorrhage (aSAH) are ADL-independent, but they often experience restrictions in (social) activities and, therefore, cannot regain their pre-morbid level of participation. Objective: In this study, participation restrictions and participation satisfaction experienced after aSAH were assess...

Purpose: To study relationships between fatigue and objective and subjective cognitive functioning, mood and comorbidity in the long term after perimesencephalic subarachnoid haemorrhage (PM-SAH). Methods: Cross-sectional study. Objective cognitive functioning was measured with: Trail Making Test; Symbol Substitution; D2; Verbal and Semantic Flu...

Objectives to (1) assess real-time patterns of fatigue; (2) assess the association between a real-time fatigue score (RTFS) and three commonly used questionnaires (Checklist Individual Strength[CIS], fatigue subscale; Modified Fatigue Impact Scale[MFIS]; and Fatigue Severity Scale[FSS]); and (3) establish factors that confound the association betwe...

Purpose: To describe the prevalence of hypertension and associated risk factors in people with long-term spinal cord injury (SCI) and to compare the prevalence of high blood pressure and/or the use of antihypertensive drugs with the prevalence in the Dutch general population. Method: Multicentre cross-sectional study (N = 282). Hypertension was...

Aim: To describe the course of parents' perceptions of the family centredness of rehabilitation services provided to their children with cerebral palsy (CP) before and after the transition from preschool to school-based services. Background: Parents of 59 children with CP aged 2.5 to 4.5 years filled in the 56-item Measure of Processes of Care (...

Introduction: To improve care for patients with spinal muscular atrophy (SMA), we assessed the physical and mental quality of life (QoL) in 62 adult patients with SMA. Methods: Physical component scores (PCS) and mental component scores (MCS) of the Short Form-36 Health Survey (SF-36) were obtained. Correlations with demographics, disease severi...

Objectives: (a) To determine levels of and factors explaining partners' burden, anxiety and depressive symptoms at two months post-stroke, (b) to predict partners' burden, anxiety and depressive symptoms at one year post-stroke based on patient and partner characteristics available at two months post-stroke. Methods: Prospective cohort study. Pa...

Background: Acquired Brain Injury (ABI) frequently results in cognitive impairment causing significant disabilities in daily life. It is therefore a critical target for cognitive rehabilitation. Currently, Virtual Reality (VR) is one of the most popular technological advances. Due to its highly controllable and dynamic nature, VR offers many new op...

The aim of this systematic review was to integrate and assess evidence for the effectiveness of multisensory stimulation (i.e., stimulating at least two of the following sensory systems: visual, auditory, and somatosensory) as a possible rehabilitation method after stroke. Evidence was considered with a focus on low-level, perceptual (visual, audit...

Cancellation tasks are widely used for diagnosis of lateralized attentional deficits in stroke patients. A disorganized fashion of target cancellation has been hypothesized to reflect disturbed spatial exploration. In the current study we aimed to examine which lesion locations result in disorganized visual search during cancellation tasks, in orde...

Prism adaptation (PA) is a widely used intervention for (visuo-)spatial neglect. PA-induced improvements can be assessed by visual search tasks. It remains unclear which outcome measures are the most sensitive for the effects of PA in neglect. In this review, we aimed to evaluate PA effects on visual search measures. A systematic literature search...

Objective: The notion of distinguishable processing mechanisms for spatial and spatiotemporal information has largely been neglected in the context of navigation. Only a recent neuropsychological case study has provided initial evidence for the idea that these elements can be differentiated at a functional level. The aim of the current study was t...

Objective: To estimate the relative contribution of psychological factors next to socio-demographic and premorbid/stroke-related factors to the risk of developing symptoms of depression and anxiety after stroke. Design: Multicenter longitudinal cohort study. Setting: Patients after stroke from 6 general hospitals. Participants: 331 patients...

Background and objective: Favorable prognosis of the upper limb depends on preservation or return of voluntary finger extension (FE) early after stroke. The present study aimed to determine the effects of modified constraint-induced movement therapy (mCIMT) and electromyography-triggered neuromuscular stimulation (EMG-NMS) on upper limb capacity e...

An article by the International Consortium of Health Outcomes Measurement, with the title 'An international standard set of patientcentered outcome measures after stroke', was published recently in the journal Stroke. In this article we reflect on this paper and its significance for the Netherlands. The authors report on an international consensus...

- Neglect occurs in 30-50% of patients in the subacute phase post-stroke. Patients with neglect ignore one side of their body or one part of the space around them. - Treatment of neglect is important, as patients with neglect recover more slowly and are less independent compared to patients without neglect.- Visual scanning training is currently re...

Objectives: An increasing number of studies have presented evidence that various patient groups with acquired brain injury suffer from navigation problems in daily life. This skill is, however, scarcely addressed in current clinical neuropsychological practice and suitable diagnostic instruments are lacking. Real-world navigation tests are limited...

Objective: To identify determinants for discharge destination of older (≥ 70 years) and younger (< 70 years) acute stroke patients. Design: Multicentre prospective cohort. Patients: A total of 395 patients, within 7 days of clinically evaluated stroke, were included from 6 hospital stroke units. Methods: The main outcome measure was discharg...

Objective To investigate whether the self-management intervention was implemented as intended. Additionally, we studied involvement in and satisfaction with the intervention among patients, their partners and therapists. Design Mixed method, prospective study. Setting Outpatient facilities of hospitals/rehabilitation centres. Participants Stroke...

Background: In typically developing children, participation in sports has been proven to be positively correlated to both physical and psychosocial health outcomes. In children and adolescents with a physical disability or chronic disease participation in both recreational and competitive sports is often reduced, while for this population an activ...

The aims of this longitudinal study were: (1) to assess associations between neuropsychological factors and health-related quality of life (HRQoL) and participation three months after discharge from inpatient acquired brain injury (ABI) rehabilitation; and (2) to determine the best neuropsychological predictor of HRQoL and participation after contr...

Background: Little information is available about the course of quality of life (QoL) post stroke and how dependency on activities of daily living (ADL) influences this course. The aim of this study was therefore to describe the course of QoL from 2 months up to 2 years post stroke and to study the influence of ADL dependency in the first week pos...

Aim: To examine the efficacy of child-focused, context-focused, and regular care approaches, delivered in a rehabilitation setting by physical or occupational therapists to preschool children with cerebral palsy (CP), in optimizing the child's self-care and mobility capabilities. Method: A multicentre randomized controlled trial clustered at the...

Objectives To assess and explore over 1 year poststroke (1) the societal costs, (2) changes in costs and quality of life (QoL) and (3) the relation between costs and QoL. Design The current study is a burden of disease study focusing on the cost-of-illness (in Euros) and QoL (in utilities) after stroke. Setting Adult patients with stroke were recru...

Objectives: To describe bladder-emptying methods used by people with long-term spinal cord injury (SCI) and to determine usage differences in relation to time since injury, sex, lesion level and completeness of lesion. Furthermore, to evaluate the relationship between bladder-emptying methods and the impact of neurogenic lower urinary tract dysfun...

Background: Children and adolescents with a chronic disease or physical disability have lower fitness levels compared to their non-disabled peers. Low physical fitness is associated with reduced physical activity, increased cardiovascular diseases, and lower levels of both cognitive and psychosocial functioning. Moreover, children and adolescents...

Objective: To objectively measure and calculate the energy expended by people with stroke during near sedentary behaviors (lying, supported and unsupported sitting, standing, wheelchair propulsion and walking), under controlled laboratory conditions, and compare these values to the energy expenditure of 1.5 Metabolic Equivalent of Task (METs) with...

Objective: To investigate the effectiveness of a self-management intervention aimed at proactive coping for stroke patients and partners, compared with an education intervention. Design: Multicentre randomized controlled trial. Participants: The study included 113 stroke patients (mean age 57.0 years (standard deviation (SD) 9.0), mean 18.8 mo...

The aim of this study was to investigate which psychological factors are related to post-stroke subjective cognitive complaints, taking into account the influence of demographic and stroke-related characteristics, cognitive deficits and emotional problems. In this cross-sectional study, 350 patients were assessed at 2 months post-stroke, using the...

Our objective was to compare the effects of cognitive behavioural therapy (CBT) and usual care (UC) on quality of life (QoL) in psychologically distressed patients with ALS and their caregivers. We conducted a multicentre randomized controlled trial (RCT). In 16 weeks, patient-carer pairs received five to 10 CBT sessions plus usual care (UC) or UC...