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. This study aims to examine the self-reported presence and type of pain, and the use, effectiveness and side effects of non-pharmacological treatments for pain. DESIGN: Cross-sectional survey regarding SCI-related pain and non-pharmacological treatments. SETTING: Community, the Netherlands. PARTICIPANTS: Outpatients with SCI from two rehabilitation centers. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Self-reported presence and type of pain, use, effectiveness and side effects of non-pharmacological treatments. RESULTS: A total of 371 patients (41.5%) returned the questionnaire. Median time since onset of SCI was 7 years. Pain following SCI was reported by 262 patients (70.6%). Neuropathic pain was reported most often (74.4%), followed by musculoskeletal pain (51.5%). Of patients with pain, 204 (77.9%) reported past or current use of non-pharmacological treatments. Non-pharmacological treatments used most were physiotherapy (67.6%), physical exercise (44.7%) and massage (22.5%). Of patients using non-pharmacological treatments, 152 patients (74.5%) reported the effect of their treatment. Most treatments for which the effect was reported, were described as moderately effective. Most side effects were reported for cannabis. CONCLUSION: Patients with SCI experiencing pain often use non-pharmacological treatments. Most treatments were described as moderately effective. Research on specific non-pharmacological treatments and different types of pain separately is needed to further determine the effectiveness of non-pharmacological treatments.

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 cognition in daily life scale for persons with cognitive problems (CDL). In this paper we describe the development, expected usability, and psychometric properties (content and face validity) of the instrument. The CDL was established through three consecutive development phases: (1) item selection, (2) item categorization and comparison, and (3) item revision and manual construction. Subsequently, a panel of eleven international experts rated the relevance of the selected items and provided comments on the expected usability and face validity. Content validity was estimated with the content validity index, based on which four items were removed. The experts' comments led to minor adjustments of the manual, domains, and formulation of the maintained items. The final instrument consists of 65 items describing behaviour that relies on cognitive functions within six domains. Future research should focus on evaluating the construct validity and reliability of the CDL.

Prevalence and trajectories of neuropsychological post-COVID-19 symptoms in initially hospitalized patients.

OBJECTIVE: To investigate the prevalence and trajectories of post-COVID-19 neuropsychological symptoms. DESIGN: Prospective longitudinal multicentre cohort study. SUBJECTS: A total of 205 patients initially hospitalized with SARS-CoV-2 (COVID-19). METHODS: Validated questionnaires were administered at 9 months (T1) and 15 months (T2) post-hospital discharge to assess fatigue, cognitive complaints, insomnia, anxiety, depression, and post-traumatic stress symptoms. RESULTS: Analyses included 184 out of 205 patients. Approximately 50% experienced high cognitive complaints at T1 and T2, while severe fatigue affected 52.5% at T1 and 55.6% at T2. Clinically relevant insomnia scores were observed in 25% of patients at both time-points. Clinically relevant anxiety scores were present in 18.3% at T1 and 16.7% at T2, depression in 15.0% at T1 and 18.9% at T2, and PTSD in 12.4% at T1 and 11.8% at T2. Most symptoms remained stable, with 59.2% of patients experiencing at least 1 persistent symptom. In addition, 31.5% of patients developed delayed-onset symptoms. CONCLUSION: Post-COVID-19 cognitive complaints and fatigue are highly prevalent and often persist. A subgroup develops delayed symptoms. Emotional distress is limited. Screening can help identify most patients experiencing long-term problems. Future research should determine risk factors for persistent and delayed onset symptoms.

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

ABSTRACT: 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. This systematic review provided an overview of current evidence about prognostic models and its performance to predict recovery of independent walking after stroke. Therefore, MEDLINE, CINAHL, and Embase were searched for all relevant studies in English and Dutch. Descriptive statistics, study methods, and model performance were extracted and divided into two categories: subacute phase and chronic phase. This resulted in 16 articles that fulfilled all the search criteria, which included 30 prognostic models. Six prognostic models showed an excellent performance (area under the curve value and/or overall accuracy ≥0.90). The model of Smith et al. (2017) showed highest overall accuracy (100%) in predicting independent walking in the subacute phase after stroke ( Neurorehabil Neural Repair 2017;31(10-11):955-64.). Recovery of independent walking can be predicted in the subacute and chronic phase after stroke. However, proper external validation and the applicability in clinical practice of identified prognostic models are still lacking.

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. We sent questionnaires to patients ≥ 18 years old undergoing UIA follow-up imaging 4 weeks before (T1), immediately after (T2), and 6 weeks after the scan (T3) to assess health-related QoL (HRQoL) and emotional functioning. At T3, we also assessed scanxiety with a purpose-designed questionnaire. We compared differences in QoL outcomes between respondents with and without scanxiety using mixed models. RESULTS: Of 158 eligible patients, 106 (67%) participated (mean age 61 years ± 11 [standard deviation], 84 women). Sixty of the 91 respondents (66%) who completed the purpose-designed questionnaire experienced scanxiety. Of the 49 respondents who experienced scanxiety after the scan, it resolved in 22 (45%) within a day after receiving the radiology report. HRQoL did not differ between respondents with or without scanxiety. Emotional functioning was worse for respondents with scanxiety (mean Hospital Anxiety and Depression Scale sum score difference at T1, 3.6 [95% CI, 0.9-6.3]; T2, 4.1 [95% CI, 1.5-6.8]; and T3, 4.0 [95% CI, 1.5-6.5]). CONCLUSIONS: Two-thirds of the respondents experienced scanxiety around follow-up imaging, which often resolved within a day after receiving results. Patients with scanxiety had similar HRQoL but worse emotional functioning compared to patients without scanxiety. The time between the scan and receiving the results should be minimized to decrease the duration of scanxiety. CLINICAL RELEVANCE STATEMENT: We showed that scanxiety is common in UIA patients, and negatively associated with emotional functioning. Since scanxiety often disappears immediately after receiving the radiology report, it should be communicated to the patient as early as possible to alleviate patients' distress. KEY POINTS: • Many patients with an unruptured intracranial aneurysm experience emotional distress around follow-up imaging, termed "scanxiety." • Patients with scanxiety had worse emotional functioning compared to patients without scanxiety. • Scanxiety often resolved within a day after receiving the radiology report.

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. RESULTS: Eleven interviews were conducted. Participants reported a lack of knowledge regarding healthy movement behaviour patterns, a lack of insight into their own movement behaviour, and some physical and cognitive limitations to engage in certain physical activities. Several social and environmental elements affecting movement behaviours were mentioned, their impact on movement behaviour varied among participants. Movement behaviour was mostly driven by habits and daily routine, without conscious regulation. CONCLUSION: Our findings show that people with stroke are unaware of their own movement behaviour or of the consequences of these behaviours on health. Movement behaviour is, for the most part, based on daily routine and personal habits. This indicates the need for a behaviour change intervention. Such interventions will need to include providing information about healthy movement behaviour, feedback on individual's movement behaviour and individualized support, taking into account the social and environmental context and personal capabilities.

There is a need to provide insight and feedback regarding individuals' movement behaviour and information about healthy movement behaviour to enable people with stroke who are highly sedentary and inactive to improve their movement behaviour.Movement behaviour is, for the most part, based on daily routine and personal habits.People need individualised support, and personal capabilities, the social and environmental context need to be taken into account to support sustainable movement behaviour change.These findings can be used in clinical practise and to inform intervention development to support movement behaviour change in people after stroke who are highly sedentary and inactive.

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. SETTING: Six Dutch hospitals. PARTICIPANTS: 205 initially hospitalized (March-June 2020), confirmed patients with SARS-CoV-2, aged ≥18 years, physically able to visit the hospital, without prior cognitive deficit, magnetic resonance imaging (MRI) contraindication, or severe neurologic damage post-hospital discharge (N=205). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Nine months post-hospital discharge, a 3T MRI scan and cognitive testing were performed and patients completed questionnaires. Medical data were retrieved from medical dossiers. Hierarchical regression analyses were performed on fatigue severity (Fatigue Severity Scale; FSS) and cognitive complaints (Cognitive Consequences after Intensive Care Admission; CLC-IC; dichotomized into CLC-high/low). Variable blocks: (1) Demographic and premorbid factors (sex, age, education, comorbidities), (2) Illness severity (ICU/general ward, PROMIS physical functioning [PROMIS-PF]), (3) Neuro-cognitive factors (self-reported neurological symptoms, MRI abnormalities, cognitive performance), (4) Psychological and social factors (Hospital Anxiety and Depression Scale [HADS], Utrecht Coping List, Social Support List), and (5) Fatigue or cognitive complaints. RESULTS: The final models explained 60% (FSS) and 48% (CLC-IC) variance, with most blocks (except neuro-cognitive factors for FSS) significantly contributing. Psychological and social factors accounted for 5% (FSS) and 11% (CLC-IC) unique variance. Higher FSS scores were associated with younger age (P=.01), lower PROMIS-PF (P<.001), higher HADS-Depression (P=.03), and CLC-high (P=.04). Greater odds of CLC-high were observed in individuals perceiving more social support (OR=1.07, P<.05). CONCLUSIONS: Results show that psychological and social factors add to biomedical factors in explaining persistent post-COVID-19 fatigue and cognitive complaints. Objective neuro-cognitive factors were not associated with symptoms. Findings highlight the importance of multidomain treatment, including psychosocial care, which may not target biologically-rooted symptoms directly but may reduce associated distress.

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. OBJECTIVES: This study aimed to examine (1) the predictive value of participation at two months on long-term HRQoL and (2) the longitudinal relationship between participation and HRQoL. METHODS: In this multicenter, prospective cohort study, patients were assessed at two and 12 months after stroke. Participation was measured with the Restriction subscale of the Utrecht Scale for Evaluation of Rehabilitation - Participation. HRQoL was assessed with the three-level version of the EuroQoL five dimensions questionnaire index score. RESULTS: This study included 291 patients. Mean age was 66.6 ± 12.4 years, 64.3% were male and mean National Institutes of Health Stroke Scale (NIHSS) was 2.5 ± 2.9. Multivariable linear regression, adjusted for demographic characteristics, stroke characteristics, physical and cognitive impairment, showed that a higher level of participation at two months correlated with a higher HRQoL at one year (B = .004; 95% CI =.002-.005). Patients whose participation improved had a greater increase in HRQoL, compared to patients without improvement (0.080 ± .21 versus -.054 ± .21; p < .001). CONCLUSIONS: The level of participation at two months post-stroke predicts HRQoL at one year. Improvement in participation during the first year after stroke is associated with improvement in HRQoL. We recommend including the assessment of participation in daily activities at follow-up visits.

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

Objectives: 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. Methods: 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. Results: Three themes emerged from the interviews: communication topics, styles and timing. Communication topics include facts about disease and prognosis, feelings, care and equipment, and the end. Although most parents perceived the familial communication style concerning ALS as open, the interviews revealed that both parents and children sometimes avoid interactions about ALS, because they do not know what to say or how to open the dialogue, are afraid to burden other family members, or are unwilling to discuss. Communication timing is directed by changes in the disease trajectory and/or questions of children. A family-level analysis showed that ALS-related family communication is sometimes perceived differently by parents and children. Conclusions: The study provides a better understanding of what, how and when parents and children in families living with ALS communicate about the disease. Most families opened the dialogue about ALS yet encountered challenges which may hamper good familial communication. Through addressing those challenges, healthcare professionals may facilitate better communication and adaptation in families with a parent 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. PARTICIPANTS: 120 partners of outpatients with ABI were randomly allocated to blended care (N=59) or usual care (N=61). INTERVENTION: The blended care intervention (20 weeks) was aimed at improving caregiving skills and consisted of 9 online sessions, combined with 2 face-to-face consultations with a social worker. MAIN OUTCOME MEASURES: Mastery was assessed with the Caregiver Mastery Scale, secondary outcome measures were caregiver strain (Caregiver Strain Index), family functioning (Family Assessment Device), anxiety and depression (Hospital Anxiety and Depression Scale), burden (self-rated), and quality of life (CarerQol). Assessments were performed at baseline, 24, and 40 weeks. RESULTS: The adjusted mean difference in caregiver mastery between intervention and control group at week 24 was 1.31 (SD3.48, 95% confidence interval (CI) -0.12 to 2.74, P=.072) and at week 40 was 1.31 (SD3.69, 95% CI -0.26 to 2.88, P=.100). In the per protocol analysis, the adjusted mean difference in caregiver mastery at week 24 was 1.53 (SD3.38, 95% CI 0.10 to 2.96, P=.036) and at week 40 was 1.57 (SD3.63, 95% CI 0.01 to 3.14, P=.049). Regarding secondary outcomes, caregiver strain was lower in the intervention group in the per protocol analysis at week 40. Family functioning was higher in the intervention group in week 24, whereas anxiety was lower at both timepoints. CONCLUSIONS: In the subset of participants who were able to complete the intervention, caregiver mastery and psychosocial functioning improved. Future work should focus on improving adherence as this will optimize beneficial effects of blended care.

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. RESULTS: In 14 cases, 13 people with amyotrophic lateral sclerosis and 12 caregivers were interviewed; and in 10 of these cases, 5 healthcare professionals. Participants described decision-making on gastrostomy as a continuous process of weighing (future) clinical need against their values and beliefs in coming to a decision to accept or reject gastrostomy, or to postpone decision-making, while being supported by loved ones and healthcare professionals. Participants described gastrostomy as inevitable, but retained agency through control over the timing of decision-making. They said physical necessity, experiences of loss and identity, and expectations about gastrostomy placement were important factors in decision-making. Decision-making was described as a family affair, with caregivers supporting patient choice. healthcare professionals supported people with amyotrophic lateral sclerosis during the decision-making process and respected their autonomy and values. People with amyotrophic lateral sclerosis stressed the importance of adequate information on the procedure and the benefits. CONCLUSION: People with amyotrophic lateral sclerosis feel in control of decision-making on gastrostomy if they are able to make their own choice at their own pace, supported by loved ones and healthcare professionals. Person-centered decision-making on gastrostomy requires early information exchange and repeated discussions with people with amyotrophic lateral sclerosis and their caregivers, incorporating their values and respecting patient choice.

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.To unravel factors associated with persisting complaints, VeCosCO will compare individuals with and without persistent fatigue and cognitive complaints >3 months after infection with SARS-CoV-2. The study consists of two work packages. The first work package aims to (1) investigate the relation between persisting complaints and neuropsychological functioning; (2) determine risk factors and at-risk phenotypes for the development of persistent fatigue and cognitive complaints, including the presence of postexertional malaise and (3) describe consequences of persistent complaints on quality of life, healthcare consumption and physical functioning. The second work package aims to (1) determine the presence of neuroinflammation with [18F]DPA-714 whole-body positron emission tomography (PET) scans in patients with persisting complaints and (2) explore the relationship between (neuro)inflammation and brain structure and functioning measured with MRI. METHODS AND ANALYSIS: This is a prospective case-control study in participants with and without persistent fatigue and cognitive complaints, >3 months after laboratory-confirmed SARS-CoV-2 infection. Participants will be mainly included from existing COVID-19 cohorts in the Netherlands covering the full spectrum of COVID-19 acute disease severity. Primary outcomes are neuropsychological functioning, postexertional malaise, neuroinflammation measured using [18F]DPA-714 PET, and brain functioning and structure using (f)MRI. ETHICS AND DISSEMINATION: Work package 1 (NL79575.018.21) and 2 (NL77033.029.21) were approved by the medical ethical review board of the Amsterdam University Medical Centers (The Netherlands). Informed consent is required prior to participation in the study. Results of this study will be submitted for publication in peer-reviewed journals and shared with the key population.

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. We evaluated feasibility using adherence and a device-specific questionnaire. Reliability was assessed by (1) comparing unsupervised and supervised measurements to identify systematic bias, and (2) comparing consecutive unsupervised measurements to determine test-retest reliability expressed as intraclass correlation coefficient (ICC) and standard error of measurement (SEM). Sensitivity to detect longitudinal change was described using linear mixed-effects models. RESULTS: We enrolled 18 patients with ALS. Adherence was 86%, where all patients found that the device suitable to measure muscle strength at home; 4 patients (24%) found the measurements burdensome. The correlation between (un)supervised measurements was excellent (Pearson's r 0.97, 95%CI; 0.94 - 0.99) and no systematic bias was present (mean difference 0.13, 95%CI; -2.22 - 2.48, p = 0.91). Unsupervised measurements had excellent test-retest reliability with an average ICC of 0.97 (95%CI: 0.94 - 0.99) and SEM of 5.8% (95%CI: 4.8 - 7.0). Muscle strength declined monthly by 1.9 %predicted points (95%CI; -3.0 to -0.9, p = 0.001). CONCLUSIONS: Using the PFD, it proved feasible to perform knee extension strength measurements at home which were reliable and sensitive for detecting muscle strength loss. Larger studies are warranted to compare the device with conventional outcomes.

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. METHODS: Using data from the Netherlands ALS registry, we did a population-based cohort study of clinicians and informal caregivers of patients with amyotrophic lateral sclerosis to assess factors associated with end-of-life decision making and the quality of end-of-life care. We included individuals who were diagnosed with amyotrophic lateral sclerosis according to the revised El-Escorial criteria, and who died between Jan 1, 2014, and Dec 31, 2016. We calculated the frequency of euthanasia in patients with amyotrophic lateral sclerosis from reports made to euthanasia review committees (ERCs) between 2012 and 2020. Results were compared with clinic-based survey studies conducted in 1994-2005. End-of-life practices were end-of-life decisions by a clinician when hastening of death was considered as the potential, probable, or definite effect comprising euthanasia, physician-assisted suicide, ending of life without explicit request, forgoing life-prolonging treatment, and intensified alleviation of symptoms. FINDINGS: Between Jan 1, 2012, and Dec 31, 2020, 4130 reports of death from amyotrophic lateral sclerosis were made to ERCs, of which 1014 were from euthanasia or physician-assisted suicide (mean frequency 25% [SD 3] per year). Sex and gender data were unavailable from the ERC registry. Of 884 patients with amyotrophic lateral sclerosis who died between Jan 1, 2014, and Dec 31, 2016, their treating clinician was identified for 731 and a caregiver was identified for 741, of whom 356 (49%) and 450 (61%), respectively, agreed to participate in the population-based survey study. According to clinicians, end-of-life practices were chosen by 280 (79%) of 356 patients with amyotrophic lateral sclerosis who died. The frequency of euthanasia in patients with amyotrophic lateral sclerosis in 2014-16 (141 [40%] of 356 deaths in patients with amyotrophic lateral sclerosis) was higher than in 1994-98 (35 [17%] of 203) and 2000-05 (33 [16%] of 209). Median survival of patients with amyotrophic lateral sclerosis from diagnosis was 15·9 months (95% CI 12·6-17·6) for those who chose euthanasia and 16·1 months (13·4-19·1) for those who did not choose euthanasia (hazard ratio 1·07, 95% CI 0·85-1·34; p=0·58). According to caregivers, compared with other end-of-life practices, patients with amyotrophic lateral sclerosis choosing euthanasia commonly reported reasons to hasten death as no chance of improvement (53 [56%] of 94 patients who chose euthanasia vs 28 [39%] of 72 patients who chose other end-of-life practices), loss of dignity (47 [50%] vs 15 [21%]), dependency (34 [36%] vs five [7%]), and fatigue or extreme weakness (41 [44%] vs 14 [20%]). According to caregivers, people with amyotrophic lateral sclerosis-whether they chose euthanasia or did not-were satisfied with the general quality (83 [93%] of 89 patients who chose euthanasia vs 73 [86%] of 85 patients who did not) and availability (85 [97%] of 88 vs 81 [91%] of 90) of end-of-life care. INTERPRETATION: The proportion of patients with amyotrophic lateral sclerosis who chose euthanasia in the Netherlands has increased since 2002. The choice of euthanasia was not associated with disease or patient characteristics, depression or hopelessness, or the availability or quality of end-of-life care. The choice of euthanasia had no effect on overall survival. Future studies could focus on the effect of discussing end-of-life options on quality of life as part of multidisciplinary care throughout the course of the disease, to reduce feelings of loss of autonomy and dignity in patients living with amyotrophic lateral sclerosis. FUNDING: Netherlands ALS Foundation.

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. Patients with ischemic stroke or intracerebral hemorrhage and unilateral upper limb motor impairment were randomized to 10 daily sessions of active or sham continuous theta-burst stimulation (cTBS) of the contralesional primary motor cortex combined with standard upper limb therapy, started within 3 weeks after stroke onset. The primary outcome was the change in the Action Research Arm Test score from baseline (pretreatment) at 3 months after stroke. Secondary outcomes included the score on the modified Rankin Scale at 3 months and the length of stay at the rehabilitation center. Statistical analyses were performed using mixed models for repeated measures. RESULTS: We enrolled 60 patients between April 2017 and February 2021, of whom 29 were randomized to active cTBS and 31 to sham cTBS. One patient randomized to active cTBS withdrew consent before the intervention and was excluded from the analyses. The mean difference in the change in Action Research Arm Test score from baseline at 3 months poststroke was 9.6 points ([95% CI, 1.2-17.9]; P=0.0244) in favor of active cTBS. Active cTBS was associated with better scores on the modified Rankin Scale at 3 months (OR, 0.2 [95% CI, 0.1-0.8]; P=0.0225) and with an 18 days shorter length of stay at the rehabilitation center than sham cTBS ([95% CI, 0.0-36.4]; P=0.0494). There were no serious adverse events. CONCLUSIONS: Ten daily sessions of cTBS of the contralesional primary motor cortex combined with upper limb training, started within 3 weeks after stroke onset, promote recovery of the upper limb, reduce disability and dependence and leads to earlier discharge from the rehabilitation center. REGISTRATION: URL: https://trialsearch.who.int/; Unique identifier: NTR6133.

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. METHODS: The Revised ALS Functional Rating Scale (ALSFRS-R) and a preliminary questionnaire, based on literature review and patient input, were completed online by patients from the Netherlands ALS registry at bimonthly intervals over a period of 12 months. A 2-week test-retest, factor analysis, Rasch analysis, and a signal-to-noise optimization strategy were performed to create a multidomain scale. Reliability, longitudinal decline, and associations with survival were evaluated. The sample size required to detect a 35% reduction in progression rate over 6 or 12 months was assessed for a clinical trial that defines the ALSFRS-R or AIMS subscales as a primary endpoint family. RESULTS: The preliminary questionnaire, consisting of 110 questions, was completed by 367 patients. Three unidimensional subscales were identified, and a multidomain scale was constructed with 7 bulbar, 11 motor, and 5 respiratory questions. Subscales fulfilled Rasch model requirements, with excellent test-retest reliability of 0.91-0.94 and a strong relationship with survival (p < 0.001). Compared with the ALSFRS-R, signal-to-noise ratios were higher as patients declined more uniformly per subscale. Consequently, the estimated sample size reductions achieved with the AIMS compared with those achieved with the ALSFRS-R were 16.3% and 25.9% for 6-month and 12-month clinical trials, respectively. DISCUSSION: We developed the AIMS, consisting of unidimensional bulbar, motor, and respiratory subscales, which may characterize disease severity better than a total score. AIMS subscales have high test-retest reliability, are optimized to measure disease progression, and are strongly related to survival time. The AIMS can be easily administered and may increase the likelihood of identifying effective treatments in ALS clinical trials.

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. Moreover, the CPIB items do not all appear to be relevant to certain populations with communication problems and context of communicative participation is changing rapidly, given the increased use of digital communication forms. The purpose of this study was to identify new PROMs developed since 2006 that aim to measure (aspects of) communication, in order to select items that are suitable for expanding the Communicative Participation Item Bank to make the item bank more widely applicable (e.g., to the hearing-impaired population) and tailored to the current societal context. METHODS: Medline and Embase were used to search for PROMs that aim to measure (aspects of) communication. Each new PROM as well as the CPIB, was evaluated to determine to what extent it contains items that measure communicative participation and to what extent these items capture all communicative participation domains by linking each item to the ICF Activities and Participation domains. RESULTS: This study identified 31 new PROMs, containing 391 items that were labelled as measuring communicative participation. The majority of the 391 items measure aspects of ICF Activities and Participation domain 'communication', followed by the domain 'interpersonal interactions and relationships'. The other ICF Activity and Participation domains were less often addressed. Analysis of the CPIB showed that items do not cover all domains of participation as defined in the ICF, such as the 'major life areas' domain. CONCLUSIONS: We found a potential pool of 391 items measuring communicative participation that could be considered for extending the CPIB. We found items in domains that are already present in the CPIB, but also items that relate to new domains, such as an item on talking with customers or clients for the 'major life areas' domain. Inclusion of new items in other domains would benefit the comprehensiveness of the item bank.

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. Therefore, we expect that providing nurses with better knowledge to deliver this care could lead to an improvement in psychosocial well-being after stroke. Currently it is not known which interventions are effective and what aspects of these interventions are most effective to improve psychosocial well-being after stroke. OBJECTIVE: To identify potentially effective interventions - and intervention components - which can be delivered by nurses to improve patients' psychosocial well-being after stroke. METHODS: A systematic review and data synthesis of randomized controlled trials and quasi experimental studies was conducted. Papers were included according to the following criteria: 1) before-after design, 2) all types of stroke patients, 3) interventions that can be delivered by nurses, 4) the primary outcome(s) were psychosocial. PubMed, Embase, PsychInfo, CINAHL and Cochrane library were searched (August 2019-April 2022). Articles were selected based on title, abstract, full text and quality. Quality was assessed by using Joanna Briggs Institute checklists and a standardized data extraction form developed by Joanna Brigss Institute was used to extract the data. RESULTS: In total 60 studies were included, of which 52 randomized controlled trials, three non-randomized controlled trials, four quasi-experimental studies, and one randomized cross-over study. Nineteen studies had a clear psychosocial content, twenty-nine a partly psychosocial content, and twelve no psychosocial content. Thirty-nine interventions that showed positive effects on psychosocial well-being after stroke were identified. Effective intervention topics were found to be mood, recovery, coping, emotions, consequences/problems after stroke, values and needs, risk factors and secondary prevention, self-management, and medication management. Active information and physical exercise were identified as effective methods of delivery. DISCUSSION: The results suggest that interventions to improve psychosocial well-being should include the intervention topics and methods of delivery that were identified as effective. Since effectiveness of the intervention can depend on the interaction of intervention components, these interactions should be studied. Nurses and patients should be involved in the development of such interventions to ensure it can be used by nurses and will help improve patients' psychosocial well-being. FUNDING AND REGISTRATION: This study was supported by the Taskforce for Applied Research SIA (RAAK.PUB04.010). This review was not registered.

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. The aim was to create a multidisciplinary view on the impact of severe COVID-19 on functioning and to compare long-term consequences between ICU and general ward patients. METHODS: This multicentre prospective cohort study assessed brain abnormalities (3 T magnetic resonance imaging), cognitive dysfunction (neuropsychological test battery), neurological symptoms, cognitive complaints, emotional distress and wellbeing (self-report questionnaires) in ICU and general ward (non-ICU) survivors. RESULTS: In al, 101 ICU and 104 non-ICU patients participated 8-10 months post-hospital discharge. Significantly more ICU patients exhibited cerebral microbleeds (61% vs. 32%, p < 0.001) and had higher numbers of microbleeds (p < 0.001). No group differences were found in cognitive dysfunction, neurological symptoms, cognitive complaints, emotional distress or wellbeing. The number of microbleeds did not predict cognitive dysfunction. In the complete sample, cognitive screening suggested cognitive dysfunction in 41%, and standard neuropsychological testing showed cognitive dysfunction in 12%; 62% reported ≥3 cognitive complaints. Clinically relevant scores of depression, anxiety and post-traumatic stress were found in 15%, 19% and 12%, respectively; 28% experienced insomnia and 51% severe fatigue. CONCLUSION: Coronavirus disease 2019 ICU survivors had a higher prevalence for microbleeds but not for cognitive dysfunction compared to general ward survivors. Self-reported symptoms exceeded cognitive dysfunction. Cognitive complaints, neurological symptoms and severe fatigue were frequently reported in both groups, fitting the post-COVID-19 syndrome.