Prevalence and Determinants of Pain in Spinal Cord Injury During Initial Inpatient Rehabilitation:Data From the Dutch Spinal Cord Injury Database

Objective: To describe the prevalence and characteristics of spinal cord injury (SCI)-related pain during initial inpatient rehabilitation and to investigate relationships with demographic and lesion characteristics. Design: Cohort during inpatient rehabilitation. Setting: Eight specialized SCI rehabilitation centers in the Netherlands. Participants: Patients with newly acquired SCI admitted for inpatient rehabilitation between November 2013 and August 2019 (N=1432). Interventions: Not applicable. Main Outcome Measures: Presence of pain at admission and discharge. Logistic regression analyses were used to study the prevalence of pain related to sex, age, etiology, completeness, and level of injury. Results: Data from 1432 patients were available. Of these patients 64.6% were male, mean age was 56.8 years, 59.9% had a nontraumatic SCI, 63.9% were classified as American Spinal Cord Injury Association Impairment Scale (AIS) D and 56.5% had paraplegia. Prevalence of pain was 61.2% at admission (40.6% nociceptive pain [NocP], 30.2% neuropathic pain [NeuP], 5.4% other pain) and 51.5% at discharge (26.0% NocP, 31.4% NeuP, 5.7% other pain). Having NocP at admission was associated with traumatic SCI. AIS B had a lower risk of NocP than AIS D at admission. Having NocP at discharge was associated with female sex and traumatic SCI. AIS C had a lower risk of NocP at discharge than AIS D. Having NeuP at admission was associated with female sex. Having NeuP at discharge was associated with female sex, age younger than 65 years vs age older than 75 years and tetraplegia. Conclusions: SCI-related pain is highly prevalent during inpatient rehabilitation. Prevalence of NocP decreased during inpatient rehabilitation, and prevalence of NeuP stayed the same. Different patient and lesion characteristics were related to the presence of SCI-related pain. Healthcare professionals should be aware of these differences in screening patients on presence and development of pain during inpatient rehabilitation

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

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 Medicine</p

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

Does upper limb strength play a prominent role in health-related quality of life in stroke patients discharged from inpatient rehabilitation?

Background: Impairments in arm function are a common problem in stroke survivors and have a large impact on health-related quality of life (HRQoL). Little is known about the longitudinal relationship between recovery of upper limb strength and changes in HRQoL. Objectives: This study aimed to determine to what extent changes in HRQoL are related to changes in upper limb strength after discharge from inpatient rehabilitation. Methods: 250 patients from an RCT were assessed at discharge from inpatient rehabilitation (baseline) and at 12 weeks post-discharge (follow-up). The Stroke Impact Scale was used to measure HRQoL, and the Motricity Index Arm was used to measure upper limb strength. Hierarchical regression analysis was performed to determine the predictive value of upper limb strength on HRQoL, relative to demographic and clinical characteristics. Regression analysis was used to determine the relation between upper limb strength improvement and HRQoL improvement. Results: Upper limb strength at baseline was a major predictor of HRQoL at follow-up, after accounting for demographic and clinical characteristics ( p < .05). Improvement in HRQoL was positively related to improvement in upper limb strength ( F(1, 240) = 18.351, p <.0005). Conclusions: These findings highlight the importance of upper limb strength in HRQoL, as HRQoL is associated with improvement in upper limb strength recovery. Better monitoring of recovery and treatment of upper limb strength during the outpatient rehabilitation period and beyond, i.e. outside the typical time-window of recovery in the first 3 months post-stroke, might contribute to higher quality of life for stroke survivors

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

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1-8 years) with CP.Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.Results: In total, sixteen themes were identified across the three domains. Within the families' Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.Conclusions: Parents face numerous challenges caring for their child's sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.IMPLICATIONS FOR REHABILITATIONThe heavy burden placed on families by sleep problems in children with cerebral palsy warrants acknowledgement in paediatric healthcare.Sleep should be routinely addressed by clinicians during health assessments using a family-centered, and multidisciplinary approach.Healthcare professionals ought to adopt a proactive, understanding, and non-judgmental attitude when addressing sleep problems.Future research should focus on developing sleep intervention strategies that take into account the diverse parental concerns and needs unique to each family situation

Participation and autonomy in the first 10 months after diagnosis of ALS:a longitudinal study

Introduction: More insight is needed into participation in daily activities and autonomy among patients with amyotrophic lateral sclerosis (ALS). Aims of this study were (1) to describe the course of participation restrictions and autonomy in participation during the first 10 months after diagnosis; (2) to study the influence of the rate of ALS progression on the course of participation. Methods: Secondary analysis of data from the longitudinal multicenter FACTS-2-ALS study. Self-report questionnaires were administered at inclusion (T0; n = 71), at 4 months (T1), 7 months (T2), 10 months (T3) after inclusion. Median duration of follow-up was 10.0 months. Participation restrictions were assessed using the sum of the Mobility Range and Social Behavior subscales of the Sickness Impact profile-68 (SIPSOC). Autonomy in participation was assessed using the Impact on Participation and Autonomy (IPA) Questionnaire. Fast disease progression was defined as an increase of 1.1 points per month or more on the ALS Functional Rating Scale. Results: Patients reported participation restrictions in all subscales while having mild physical limitations. There was a decrease of participation over time (restrictions and autonomy). This decrease was greatest in patients with fast disease progression. Disease progression negatively influenced movement-related participation more than social interaction domains. Rate of disease progression was more strongly related to SIPSOC scores compared to IPA scores. Discussion: Preserving participation may be an important determinant of quality of care for patients with ALS. Rate of progression of the disease should be taken into account as it was found to be significantly associated with the level of participation