Measures used to assess impact of providing care among informal caregivers of persons with stroke, spinal cord injury, or amputation:a systematic review

Purpose: (1) To identify measures used to evaluate the impact of caregiving among caregivers of persons with stroke, spinal cord injury, and amputation; and (2) to systematically evaluate their clinimetric properties reported in validation studies. Materials and methods: Two separate systematic reviews (Embase, PsycINFO, CINAHL, Pubmed/Medline) were conducted. COSMIN guidelines were used to assess clinimetric properties and methodological quality of studies. Results: (1) 154 studies published between 2008 and May 2019 were included, in which 48 measures were used, mostly describing negative impact. Thirty measures were used only once and not further described. (2) In general, structural validity, internal consistency, and hypothesis testing were often investigated. Reliability, cross-cultural and criterion validity to a lesser extent, and scale development and content validity were rarely described. Tests of measurement error and responsiveness were exceptional. Most supporting evidence was found for the Zarit Burden Interview Short Form, Caregiver Burden Scale and Positive Aspects of Caregiving Questionnaire. Conclusions: There is a wide variety of impact of caregiving measures. The present study provided a detailed overview of what is known about clinimetric characteristics of 18 different measures repeatedly used in research. The overview provides clinicians a guidance of appropriate measure selection. PROSPERO registration: CRD4201809479

Dynamic assessment of visual neglect: The Mobility Assessment Course as a diagnostic tool

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 feasibility of the Mobility Assessment Course (MAC), a visual search multitask, to assess neglect, and its relation with existing neglect tasks. Method: Stroke patients admitted for inpatient rehabilitation and healthy controls were tested with the MAC in different corridors. Participants had to move through a corridor, finding and reporting 24 targets attached to the walls. In addition, the shape cancellation, line bisection, and Catherine Bergego Scale (CBS) were used in order to compare the MAC with existing diagnostic tools for neglect. Results: Administering the MAC was feasible, as 112 of 113 patients completed the MAC with a median duration of 4.09 min. Depending on the corridor where the assessment took place, in 88.5–93.3% of assessments all targets were visible. The number of omissions (total and contralesional) and the asymmetry score (contralesional–ipsilesional omissions) on the MAC as well as collisions and corrections, were higher for patients with neglect than for those without neglect. Depending on the neglect task used, 4.0–18.6% of patients without neglect on neuropsychological tasks or the CBS showed neglect on the MAC. Vice versa, 17.2–29.3% of patients who showed neglect at neuropsychological assessment or the CBS did not do so on the MAC. Finally, a moderate to strong positive relation was seen between neglect at neuropsychological assessment, the CBS, and the MAC. Conclusions: The MAC is an ecological task in which both quantitative and qualitative data on neglect can be collected. In order to assess the presence of neglect and neglect severity in a dynamic way, the MAC could be administered in conjunction with neuropsychological assessment

Validity of the Utrecht scale for evaluation of rehabilitation-participation restrictions scale in a hospital-based stroke population 3 months after stroke

Background:The Utrecht Scale for Evaluation of Rehabilitation-Participation Restrictions scale (USER-P-R) is a promising patient-reported outcome measure, but has currently not been validated in a hospital-based stroke population. Objective:To examine psychometric properties of the USER-P-R in a hospital-based stroke population 3 months after stroke onset. Methods:Cross-sectional study including 359 individuals with stroke recruited through 6 Dutch hospitals. The USER-P-R, EuroQol 5-dimensional 5-level questionnaire (EQ-5D-5 L), Patient Reported Outcomes Measurement Information System 10-Question Global Health Short Form (PROMIS-10), modified Rankin Scale (mRS) and two items on perceived decrease in health and activities post-stroke were administered in a telephone interview 3 months after stroke. The internal consistency, distribution, floor/ceiling effects, convergent validity and discriminant ability of the USER-P-R were calculated. Results:Of all participants, 96.9% were living at home and 50.9% experienced no or minimal disabilities (mRS 0-1). The USER-P-R showed high internal consistency (alpha = 0.90) and a non-normal left-skewed distribution with a ceiling effect (21.4% maximum scores). A substantial proportion of participants with minimal disabilities (mRS 1) experienced restrictions on USER-P-R items (range 11.9-48.5%). The USER-P-R correlated strongly with the EQ-5D-5 L, PROMIS-10 and mRS. The USER-P-R showed excellent discriminant ability in more severely affected individuals with stroke, whereas its discriminant ability in less affected individuals was moderate. Conclusions:The USER-P-R shows good measurement properties and provides additional patient-reported information, proving its usefulness as an instrument to evaluate participation after 3 months in a hospital-based stroke population

What Does It Take to Search Organized? The Cognitive Correlates of Search Organization During Cancellation After Stroke

AbstractObjectives: Stroke could lead to deficits in organization of visual search. Cancellation tests are frequently used in standard neuropsychological assessment and appear suitable to measure search organization. The current aim was to evaluate which cognitive functions are associated with cancellation organization measures after stroke. Methods: Stroke patients admitted to inpatient rehabilitation were included in this retrospective study. We performed exploratory factor analyses to explore cognitive domains. A digital shape cancellation test (SC) was administered, and measures of search organization (intersections rate and best r) were computed. The following cognitive functions were measured by neuropsychological testing: neglect (SC, line bisection; LB, Catherine Bergego Scale; CBS, and Balloons Test), visuospatial perception and construction (Rey Complex Figure Test, RCFT), psychomotor speed (Trail Making Test; TMT-A), executive functioning/working memory (TMT-B), spatial planning (Tower Test), rule learning (Brixton Test), short-term auditory memory (Digit Span Forward; DSF), and verbal working memory (Digit Span Backward; DSB). Results: In total, 439 stroke patients were included in our analyses. Four clusters were separated: “Executive functioning” (TMT-A, TMT-B, Brixton Test, and Tower Test), “Verbal memory” (DSF and DSB), “Search organization” (intersections rate and best r), and “Neglect” (CBS, RCFT copy, Balloons Test, SC, and LB). Conclusions: Search organization during cancellation, as measured with intersections rate and best r, seems a distinct cognitive construct compared to existing cognitive domains that are tested during neuropsychological assessment. Administering cancellation tests and analyzing measures of search organization could provide useful additional insights into the visuospatial processes of stroke patients. (JINS, 2018, 24, 424–436)</jats:p

Prediction of Psychological Distress Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others

Objectives: To identify intra- and interpersonal sociodemographic, injury-related, and psychological variables measured at admission of inpatient rehabilitation that predict psychological distress among dyads of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others (ie, individuals close to the individual with a disability, mostly family members) 6 months after discharge. Differences in predictors were investigated for persons with SCI or ABI and their significant others and were compared between diagnoses. Design: Prospective longitudinal study. Setting: Twelve Dutch rehabilitation centers. Participants: Dyads (N= 157) consisting of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. Interventions: Not applicable. Main Outcome Measures: Psychological distress (Hospital Anxiety and Depression Scale). Results: Sociodemographic and injury-related variables were not or were only weakly associated with psychological distress among individuals with SCI or ABI and their significant others 6 months after discharge. Bivariately, higher baseline psychological distress, lower scores on adaptive psychological characteristics (combination of self-efficacy, proactive coping, purpose in life, resilience), and higher scores on maladaptive psychological characteristics (combination of passive coping, neuroticism, appraisals of threat and loss) were related to higher psychological distress, as well as crosswise between individuals with SCI or ABI and their significant others, although less strongly. Combined prediction models showed that psychological distress among persons with SCI or ABI was predicted by education level of their significant other, their own baseline psychological distress, and their own maladaptive psychological characteristics (explained variance, 41.9%). Among significant others, only their own baseline psychological distress predicted psychological distress (explained variance, 40.4%). Results were comparable across diagnoses. Conclusions: Although a dyadic connection was shown, primarily one's own baseline psychological distress and psychological characteristics were important in the prediction of later psychological distress among both individuals with SCI or ABI and their significant others. Screening based on these variables could help to identify persons at risk for psychological distress. (C) 2020 by the American Congress of Rehabilitation Medicin

Feasibility and user-experience of virtual reality in neuropsychological assessment following stroke

Virtual Reality (VR) offers the possibility to assess cognitive functioning in a dynamic environment resembling daily life. In this cross-sectional study, we used two user interfaces, namely non-immersive VR by using a computer monitor (CM) and immersive VR by using a head-mounted display (HMD). We investigated (1) potential differences in feasibility, user-experience, and a potential preference for one user interface over another between stroke patients and healthy controls; (2) potential differences in feasibility, user-experience, and preference between patients referred for inpatient rehabilitation care and patients referred for outpatient rehabilitation care; and (3) potential demographic and clinical characteristics that were related to patients' preference for one user interface over another. Stroke patients (n = 88) and healthy controls (n = 66) performed a VR-task with a CM and HMD. Both user interfaces were feasible to use, irrespective of clinical referral (in- or outpatient rehabilitation care). Patients reported an enhanced feeling of engagement, transportation, flow, and presence, but more negative side effects when tested with a HMD, compared to a CM. The majority of stroke patients had no preference for one user interface over the other, yet younger patients tended to prefer a HMD. VR seems highly feasible in stroke patients

Self-Efficacy Predicts Personal and Family Adjustment Among Persons With Spinal Cord Injury or Acquired Brain Injury and Their Significant Others:A Dyadic Approach

Objectives: To investigate whether the combination of self-efficacy levels of individuals with spinal cord injury (SCI) or acquired brain injury (ABI) and their significant others, measured shortly after the start of inpatient rehabilitation, predict their personal and family adjustment 6 months after inpatient discharge. Design: Prospective longitudinal study. Setting: Twelve Dutch rehabilitation centers. Participants: Volunteer sample consisting of dyads (N=157) of adults with SCI or ABI who were admitted to inpatient rehabilitation and their adult significant others. Interventions: Not applicable. Main Outcome Measures: Self-efficacy (General Competence Scale) and personal and family adjustment (Hospital Anxiety and Depression Scale and McMaster Family Assessment Device General Functioning). Results: In 20 dyads, both individuals with SCI or ABI and their significant others showed low self-efficacy at baseline. In 67 dyads, both showed high self-efficacy. In the low-self-efficacy dyads, 61% of the individuals with SCI or ABI and 50% of the significant others showed symptoms of anxiety 6 months after discharge, vs 23% and 30%, respectively, in the high-self-efficacy dyads. In the low-self-efficacy dyads, 56% of individuals with SCI or ABI and 50% of the significant others reported symptoms of depression, vs 20% and 27%, respectively, in the high-self-efficacy dyads. Problematic family functioning was reported by 53% of the individuals with SCI or ABI and 42% of the significant others in the low-self-efficacy dyads, vs 4% and 12%, respectively, in the high-self-efficacy dyads. Multivariate analysis of variance analyses showed that the combination of levels of self-efficacy of individuals with SCI or ABI and their significant others at the start of inpatient rehabilitation predict personal (V=0.12; F-6,F-302=2.8; P=.010) and family adjustment (V=0.19; F-6,F-252=4.3; P Conclusions: Low-self-efficacy dyads appear to be more at risk for personal and family adjustment problems after discharge. Screening for self-efficacy may help healthcare professionals to identify and support families at risk for long-term adjustment problems. (C) 2020 by the American Congress of Rehabilitation Medicine. Published by Elsevier Inc

Effects of family group conferences among high-risk patients of chronic disability and their significant others:study protocol for a multicentre controlled trial

INTRODUCTION: Many patients and family members experience a large gap between the protected environment during inpatient medical rehabilitation and life in the community after discharge. They feel insufficiently prepared to cope with the consequences of their disability in daily life. This study protocol describes the design measuring the effectiveness and implementation of family group conferences on the empowerment of patients with a high risk of chronic disability and their significant others. METHODS AND ANALYSIS: A multicentre controlled trial will be carried out in 12 rehabilitation centres in the Netherlands. A total of 328 clinically admitted patients will participate (≥18 years, diagnosed with acquired brain injury, spinal cord injury or leg amputation), and their significant others will be included. During three family group conferences, supported by the social worker, the patient, significant other and their social network will be stimulated in collaboration, to set up participation goals, determine the needed help and make a concrete action plan. Self-reported questionnaires will be collected at baseline, clinical discharge, and 3 months and 6 months following clinical discharge. Empowerment as the primary outcome is operationalised as self-efficacy and participation. Secondary outcome measures are psychological (eg, coping, neuroticism) and environmental (eg, family functioning, social support) factors. This is the first controlled trial evaluating the effectiveness of family group conferences in rehabilitation medicine among adult patients and their significant others, providing us with knowledge in improving rehabilitation care. ETHICS AND DISSEMINATION: This study has been approved by the Medical Ethics Committee of the University Medical Center Utrecht (number 15-617/C). The results will be published in peer-reviewed journals and presented in local, national and international conferences. TRIAL REGISTRATION NUMBER: NTR5742; Pre-results

Pharmacological Treatment of Visuospatial Neglect

Objectives The aims of the current review were (1) to give an overview of human studies investigating pharmacotherapy to ameliorate visuospatial neglect and (2) to evaluate the quality of those studies. Methods A systematic literature search using PubMed, Scopus, and ResearchGate was conducted in regard to studies that evaluated pharmacological interventions aiming to ameliorate poststroke visuospatial neglect. The search was limited in the following features: species (human), adults (≥18 years of age), language (English), and type of neglect (visuospatial). Two independent authors extracted data on study content and effectiveness and evaluated the quality of studies and methods. Results A total of 11 studies were identified. Three studies were considered to be of moderate quality, the others of low quality. Seven studies represented dopaminergic treatment; 3 studies represented cholinergic treatment; and 1 study represented noradrenergic treatment. Three dopaminergic studies showed primarily positive effects of dopaminergic stimulation on visuospatial neglect, whereas three others showed adverse effects. All 3 cholinergic studies found positive effects in some outcome measures concerning visuospatial neglect. Noradrenergic stimulation improved maintenance of attention when exploring space. Conclusions Currently, cholinergic therapy might be the best option for future research. However, we must emphasize the explorative nature and the limited quality of the reviewed studies

Psychological factors after stroke:Are they stable over time?

Objective: Psychological factors influence stroke outcomes, such as participation and quality of life. Although important for clinical practice, not much is known about the temporal stability of these factors. This study explored whether psychological factors are stable post-stroke. Methods: Prospective longitudinal cohort study. The following psychological factors were assessed using self-report questionnaires at 2 months and at 2 years post-stroke: proactive coping, self-efficacy, extraversion, optimism, passive coping, neuroticism and pessimism. Changes over time, associations and dimensions among psychological factors were considered. Results: Data for 324 participants were available. Only passive coping scores showed no change between 2 months and 2 years post-stroke. Participants showed less proactive coping, lower self-efficacy, less extraversion, less optimism, more neuroticism and more pessimism over time. All but one inter-correlation of psychological factors, r = [–0.14; 0.71], and all correlations over time, r = [0.42–0.64], were significant. At both time-points, the psychological factors clustered into an “adaptive psychological factor” (proactive coping, self-efficacy, extraversion) and a “maladaptive psychological factor” (passive coping, neuroticism). Conclusion: Across all psychological factors, changes toward less favourable scores were found. Clinicians should pay attention to adaptive and maladaptive psychological factors among stroke patients during long-term care