Development and validation of MyCommunication-Adults, a self-report communicative participation measure.

Background: People with communication problems experience challenges in participation. Optimizing communicative participation for this population is an important outcome of speech and language therapy. Participation experiences are best assessed from the patient's perspective, using a patient-reported outcome measure (PROM).

Acceptability and potential benefit of a self-compassion intervention for people living with amyotrophic lateral sclerosis: a mixed methods pilot study.

This proof-of-concept study aimed to explore the acceptability and potential benefit of a self-guided online self-compassion intervention to aid resilient coping and reduce emotional distress among patients and caregivers living with ALS. A single-arm pilot study was conducted in 20 adults living with ALS either as a patient or as a caregiver. Acceptability was examined using questionnaires ( = 20) and semi-structured interviews ( = 9).

Improving Movement Behavior in People after Stroke with the RISE Intervention: A Randomized Multiple Baseline Study.

High amounts of sedentary behavior increase the risk of cardiovascular disease. This study aimed to determine the preliminary effectiveness and feasibility of the RISE intervention to support community-dwelling people with stroke, who are highly sedentary, to reduce and interrupt sedentary time. Additionally, the added value of including participatory support was determined.

Gender differences in participation one year after stroke: exploring biopsychosocial predictors for women and men.

Background: Women appear to have a higher risk for long term restrictions in participation than men. This gender difference is poorly understood, as solely biomedical factors have been examined to date.

Objectives: The aims of this study are (1) to map gender differences in participation outcome one year after stroke, and (2) to identify demographic, stroke-related, or psychological predictors of participation for women and men separately.

Neuropsychological functioning after COVID-19: minor differences between individuals with and without persistent complaints after SARS-CoV-2 infection.

It is unclear how self-reported severe fatigue and difficulty concentrating after SARS-CoV-2 infection relate to objective neuropsychological functioning. The study aimed to compare neuropsychological functioning between individuals with and without these persistent subjective complaints. : Individuals with and without persistent severe fatigue (Checklist Individual Strength (CIS) fatigue ≥ 35) and difficulty concentrating (CIS concentration ≥ 18) at least 3 months after SARS-CoV-2 infection were included.

Use and experienced effectiveness of non-pharmacological treatments for chronic spinal cord injury related pain in The Netherlands: A cross-sectional survey.

Context/objective: Chronic pain is a common secondary condition in spinal cord injury (SCI). Pharmacological interventions to reduce pain are associated with side effects. The reported effects of non-pharmacological treatments are unclear.

Development and content validity of the cognition in daily life scale (CDL).

Cognitive impairment can negatively influence daily functioning. Current cognitive measures are essential for diagnosing cognitive impairment, but findings on these tests do not always represent the level of cognitive functioning in daily life. Therefore, this study aimed to design a structured measurement instrument to observe and rate the impact of cognitive impairment in daily life, named the (CDL).

Predicting Recovery of Independent Walking After Stroke: A Systematic Review.

Patients recovering from a stroke experience reduced participation, especially when they are limited in daily activities involving walking. Understanding the recovery of independent walking, can be used by clinicians in the decision-making process during rehabilitation, resulting in more personalized stroke rehabilitation. Therefore, it is necessary to gain insight in predicting the recovery of independent walking in patients after stroke.

Factors related to high-risk movement behaviour in people with stroke who are highly sedentary and inactive.

Purpose: To identify Capabilities, Opportunities, and Motivational factors influencing movement behaviour throughout the day in people with stroke who are highly sedentary and inactive to enable intervention development.

Methods: A qualitative study was conducted using semistructured interviews with people with stroke. The interview guide was based on the Capabilities, Opportunities, and Motivation Behavioural model.

Scanxiety and quality of life around follow-up imaging in patients with unruptured intracranial aneurysms: a prospective cohort study.

Objectives: Patients with an unruptured intracranial aneurysm (UIA) may experience scanxiety around follow-up imaging. We studied the prevalence and temporal pattern of scanxiety, and compared quality of life (QoL) outcomes in patients with and without scanxiety.

Methods: We performed a prospective cohort study in a tertiary referral center in the Netherlands between October 2021 and November 2022.

A Biopsychosocial Approach to Persistent Post-COVID-19 Fatigue and Cognitive Complaints: Results of the Prospective Multicenter NeNeSCo Study.

Objective: To evaluate whether psychological and social factors complement biomedical factors in understanding post-COVID-19 fatigue and cognitive complaints. Additionally, to incorporate objective (neuro-cognitive) and subjective (patient-reported) variables in identifying factors related to post-COVID-19 fatigue and cognitive complaints.

Design: Prospective, multicenter cohort study.

What, how and when do families communicate about ALS? A qualitative exploration of parents' and children's perceptions.

: In families with a parent diagnosed with amyotrophic lateral sclerosis (ALS), children's adaptation depends among others on how their parents communicate with them about the disease and its trajectory. The aim of this study was to explore parents' and children's perceptions of ALS-related family communication. : A qualitative analysis using a conventional content analysis approach was applied to interview data previously collected from 21 parents (8 with ALS) and 15 children (age 13-23 years) about their experiences living with ALS.

The Effects of a Blended Care Intervention in Partners of Patients With Acquired Brain Injury - Results of the CARE4Carer Randomized Controlled Trial.

Objective: To assess effects of the CARE4Carer blended care intervention on caregiver mastery and psychosocial functioning compared with usual care in partners of patients with acquired brain injury (ABI).

Design: Multicenter randomized controlled trial.

Setting: Nine sites for rehabilitation medicine.

Control in the absence of choice: A qualitative study on decision-making about gastrostomy in people with amyotrophic lateral sclerosis, caregivers, and healthcare professionals.

Background: Gastrostomy is recommended in amyotrophic lateral sclerosis for long-term nutritional support, however, people with amyotrophic lateral sclerosis and healthcare professionals perceive decision-making as complex.

Method: To explore their perspectives on decision-making regarding gastrostomy, we used semi-structured interviews with people with amyotrophic lateral sclerosis, who had made a decision, and their caregivers; healthcare professionals were interviewed separately. Interviews were transcribed and analyzed thematically.

Portable fixed dynamometry enables home-based, reliable assessment of muscle strength in patients with amyotrophic lateral sclerosis: a pilot study.

Objective: To determine the feasibility, reliability, and sensitivity of remotely monitoring muscle strength loss of knee extensors using a novel portable fixed dynamometer (PFD) in patients with amyotrophic lateral sclerosis (ALS).

Methods: We conducted a pilot study with a newly developed device to measure knee extension strength. Patients performed unsupervised PFD measurements, biweekly, for 6 months at home.

Neurobiological basis and risk factors of persistent fatigue and concentration problems after COVID-19: study protocol for a prospective case-control study (VeCosCO).

Introduction: The risk factors for persistent fatigue and cognitive complaints after infection with SARS-CoV-2 and the underlying pathophysiology are largely unknown. Both clinical factors and cognitive-behavioural factors have been suggested to play a role in the perpetuation of complaints. A neurobiological aetiology, such as neuroinflammation, could be the underlying pathophysiological mechanism for persisting complaints.

Frequency of euthanasia, factors associated with end-of-life practices, and quality of end-of-life care in patients with amyotrophic lateral sclerosis in the Netherlands: a population-based cohort study.

Background: Amyotrophic lateral sclerosis is a progressive and lethal neurodegenerative disease that is at the forefront of debates on regulation of assisted dying. Since 2002, when euthanasia was legally regulated in the Netherlands, the frequency of this end-of-life practice has increased substantially from 1·7% of all deaths in 1990 and 2005 to 4·5% in 2015. We aimed to investigate whether the frequency of euthanasia in patients with amyotrophic lateral sclerosis had similarly increased since 2002, and to assess the factors associated with end-of-life practices and the quality of end-of-life care in patients with this disease.

Continuous Theta-Burst Stimulation of the Contralesional Primary Motor Cortex for Promotion of Upper Limb Recovery After Stroke: A Randomized Controlled Trial.

Background: Despite improvements in acute stroke therapies and rehabilitation strategies, many stroke patients are left with long-term upper limb motor impairment. We assessed whether an inhibitory repetitive transcranial magnetic stimulation treatment paradigm started within 3 weeks after stroke onset promotes upper limb motor recovery.

Methods: We performed a single-center randomized, sham-controlled clinical trial.

Development of a Rasch-Built Amyotrophic Lateral Sclerosis Impairment Multidomain Scale to Measure Disease Progression in ALS.

Background And Objectives: Current scales used in amyotrophic lateral sclerosis (ALS) attempt to summarize different functional domains or "dimensions" into 1 overall score, which may not accurately characterize the individual patient's disease severity or prognosis. The use of composite score risks declaring treatments ineffective if not all dimensions of ALS disease progression are affected equally. We aimed to develop the ALS Impairment Multidomain Scale (AIMS) to comprehensively characterize disease progression and increase the likelihood of identifying effective treatments.

Further development in measuring communicative participation: identifying items to extend the applicability of the communicative participation item bank.

Background: The ability to communicate is a prerequisite for participation in today's society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was developed in 2006. Since then, several new PROMs have been developed to measure communication and the impact of communication disorders on participation.

Interventions for improving psychosocial well-being after stroke: A systematic review.

Background: Up to one third of all stroke patients suffer from one or more psychosocial impairments. Recognition and treatment of these impairments are essential in improving psychosocial well-being after stroke. Although nurses are ideally positioned to address psychosocial well-being, they often feel insecure about providing the needed psychosocial care.

Participation in daily life activities at two months after stroke predicts long-term health-related quality of life.

Background: After stroke, many patients experience problems with participation in daily activities. Improving participation is the main goal in stroke rehabilitation. However, the longitudinal relationship between participation and health-related quality of life (HRQoL) remains unclear.

Neurological and (neuro)psychological sequelae in intensive care and general ward COVID-19 survivors.

Background And Purpose: Coronavirus disease 2019 (COVID-19) affects the brain, leading to long-term complaints. Studies combining brain abnormalities with objective and subjective consequences are lacking. Long-term structural brain abnormalities, neurological and (neuro)psychological consequences in COVID-19 patients admitted to the intensive care unit (ICU) or general ward were investigated.