A5032628472- Amyotrophic Lateral Sclerosis Research
- Neurogenetic and Muscular Disorders Research
- Parkinson's Disease Mechanisms and Treatments
- Family and Disability Support Research
- Musculoskeletal pain and rehabilitation
- Physical Activity and Health
- Behavioral Health and Interventions
- Cerebral Palsy and Movement Disorders
- Cancer survivorship and care
- Diabetes Management and Education
- Stroke Rehabilitation and Recovery
- Family Support in Illness
- Congenital Anomalies and Fetal Surgery
- Microbial infections and disease research
- Acute Ischemic Stroke Management
- Family Caregiving in Mental Illness
- Psychiatric care and mental health services
- Peripheral Neuropathies and Disorders
- Palliative Care and End-of-Life Issues
- Patient-Provider Communication in Healthcare
- Botulinum Toxin and Related Neurological Disorders
- Dialysis and Renal Disease Management
- Cardiac Health and Mental Health
- Hereditary Neurological Disorders
- Chronic Obstructive Pulmonary Disease (COPD) Research
Aarhus University Hospital
2025
De Hoogstraat Revalidatie
2010-2023
University Medical Center Utrecht
2012-2023
Cancer Genomics Centre
2013-2023
VieCuri Medisch Centrum
2023
Zuyderland Medisch Centrum
2023
Maastricht University
2023
Utrecht University
2018-2021
American Physical Therapy Association
2019
Heidelberg University
2018
Objectives In studies involving theoretical constructs, it is important that measures have good content validity and there not contamination of by from other constructs. While reliability construct are routinely reported, to date, has been a satisfactory, transparent, systematic method assessing reporting validity. this paper, we describe methodology discriminant ( DCV ) illustrate its application in three studies. Methods Discriminant involves six steps: definition, item selection, judge...
Objective The Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) is widely applied to assess disease severity and progression in patients with motor neuron (MND). objective of the study inter-rater intra-rater reproducibility, i.e., reliability agreement, a self-administration version ALSFRS-R for use apps, online platforms, clinical care trials. Methods was developed based on both patient expert feedback. To 59 MND filled out were subsequently assessed by three raters....
Maintaining high adherence rates (session attendance and compliance) in exercise programs during breast cancer treatment can be challenging. We aimed to identify predictors an program adjuvant treatment.Ninety-two patients with localized undergoing chemotherapy were randomly assigned 18-week supervised moderate-to-high intensity aerobic resistance program, including two 1-hour sessions/week. Additionally, participants asked physically active for at least 30 minutes/day on three other days....
The Brief Illness Perception Questionnaire (Brief IPQ) is a commonly used questionnaire that aims to assess patients' illness beliefs. There is, however, no direct information on how people interpret and respond this questionnaire, nor the nature extent of problems have when completing it. present study describes patients encounter IPQ.Cross-sectional observational study.A 'think-aloud' method was employed with two samples: 6 attending preoperative exercise programme in secondary care, 11...
Objectives Cognitive and behavioural changes within the spectrum of frontotemporal dementia (FTD) are observed frequently in patients with amyotrophic lateral sclerosis (ALS). Whether these also occur other forms motor neuron disease (MND) is not well studied. We therefore systemically screened a large cohort primary (PLS) progressive muscular atrophy (PMA) for cognitive changes, subsequently compared our findings ALS. Methods Using set screening instruments (Edinburgh Behavioural ALS...
The amyotrophic lateral sclerosis functional rating scale-revised (ALSFRS-R) is a widely used primary outcome measure in (ALS) clinical practice and trials. ALSFRS-R items cannot, however, validly be summed to obtain total score, but constitute domain scores reflecting profile of disease severity. Currently, there are different measurement models for estimating scores. objective the present study is, therefore, derive model that best fits data valid uniform estimation Data from 1556 patients...
Fatigue is a major problem of cancer patients. Thirty percent survivors report serious fatigue three years after finishing treatment. There evidence that physical exercise during treatment reduces fatigue. This may also lead to an improvement quality life. Such findings result in decrease healthcare related expenditures and societal costs due sick leave. However, no studies are known investigated these hypotheses. Therefore, the primary aim our study assess effect on reducing complaints...
Our objective was to compare the effects of cognitive behavioural therapy (CBT) and usual care (UC) on quality life (QoL) in psychologically distressed patients with ALS their caregivers. We conducted a multicentre randomized controlled trial (RCT). In 16 weeks, patient-carer pairs received five 10 CBT sessions plus or UC alone. Outcome measures were SF-36 Mental Component Summary (MCS), ALSAQ-40 Emotional Functioning (EF), Hospital Anxiety Depression Scale (HADS) Caregiver Strain Index...
To improve care for patients with spinal muscular atrophy (SMA), we assessed the physical and mental quality of life (QoL) in 62 adult SMA.Physical component scores (PCS) (MCS) Short Form-36 Health Survey (SF-36) were obtained. Correlations demographics, disease severity, emotional distress assessed. We used hierarchical multiple regression analysis to identify determinants QoL.PCS lower, MCS higher than healthy reference population. Patients milder SMA types reported lower on several...
Objective: To evaluate whether a blended (face-to-face and online) psychosocial support program for caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) Progressive Muscular Atrophy (PMA), aimed at enhancing feeling control over caregiving, reduces psychological distress. Methods: A randomized controlled trial using wait-list design was conducted. Caregiver-patient dyads were randomly assigned to either the (n = 74) or group 74). The program, based on Acceptance Commitment...
Abstract Background Amyotrophic lateral sclerosis (ALS) is a fatal progressive neurodegenerative disorder affecting motor neurons in the spinal cord, brainstem and cortex, leading to muscle weakness. Muscle weakness may result avoidance of physical activity, which exacerbates disuse cardiovascular deconditioning. The impact grave prognosis depressive symptoms hopelessness. Since there no cure for ALS, optimal treatment based on symptom management preservation quality life (QoL), provided...
Background: Weakness caused by motor neuron degeneration in amyotrophic lateral sclerosis (ALS) may result avoidance of physical activity, resulting deconditioning and reduced health-related quality life (HRQoL). Objective: To study the effectiveness aerobic exercise therapy (AET) on disease-specific generic HRQoL ambulatory patients with ALS. Methods: We conducted a multicenter, assessor-blinded, randomized controlled trial. Using biphasic randomization model, ALS were assigned (1:1) to...
Partners are often the main caregivers in care for patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). Providing during fatal disease course of these is challenging many experience feelings distress. A blended psychosocial support program based on Acceptance Commitment Therapy was developed to partners ALS PMA. The aim this qualitative study gather insight into experiences different components (program evaluation) discover what gained from following...
Abstract Objective The aim of this study was to explore the support needs Dutch informal caregivers patients with amyotrophic lateral sclerosis (ALS). Method Individual semi-structured interviews were conducted 21 ALS patients. Audio-taped transcribed and data analyzed thematically. Result A total four global emerged: “more personal time”, “assistance in applying for resources”, “counseling”, “peer contact”. Despite their needs, are reluctant apply accept support. They saw own as secondary...
ABSTRACT Introduction : In this study we assessed social participation in 62 adults with spinal muscular atrophy (SMA) types 1c–4. Methods The outcome measure used was the Utrecht Scale of Evaluation Rehabilitation–Participation (USER‐P) Frequency, Restrictions, and Satisfaction scores, a hierarchical regression analysis. Results Early‐onset (types 1, 2, 3a) late‐onset 3b 4) SMA patients reported similar frequency satisfaction scores. “Age,” “motor skills,” “pain,” “feelings depression”...
Self-management interventions are considered effective in patients with chronic disease, but trials have shown inconsistent results, and it is unknown which benefit most. Adequate self-management requires behaviour change both health care providers. Therefore, the Activate intervention was developed a focus on nurses. The aims for single behaviour, namely physical activity, primary at risk cardiovascular disease. aim of this study to evaluate effectiveness intervention. A two-arm cluster...