Challenges to the Standardization of Trauma Data Collection in Burn,Traumatic Brain Injury,Spinal Cord Injury,and Other Trauma Populations: A Call for Common Data Elements for Acute and Longitudinal Trauma Databases

Objective

Common data elements (CDEs) promote data sharing, standardization, and uniform data collection, which facilitate meta-analyses and comparisons of studies. Currently, there is no set of CDEs for all trauma populations, but their creation would allow researchers to leverage existing databases to maximize research on trauma outcomes. The purpose of this study is to assess the extent of common data collection among 5 trauma databases.

Towards the Development of Clinical Measures for Spinal Cord Injury Based on the International Classification of Functioning,Disability and Health With Rasch Analyses

Objectives

To determine whether the International Classification of Functioning, Disability and Health (ICF) categories relevant to spinal cord injury (SCI) can be integrated in clinical measures and to obtain insights to guide their future operationalization. Specific aims are to find out whether the ICF categories relevant to SCI fit a Rasch model taking into consideration the dimensionality found in previous investigations, local item dependencies, or differential item functioning.

Design

All second-level ICF categories collected in the Development of ICF Core Sets for SCI project in specialized centers within 15 countries from 2006 through 2008.

Setting

Secondary data analysis.

Participants

Adults (N=1048) with SCI from the early postacute and long-term living context.

Interventions

Not applicable.

Main Outcome Measures

Two unidimensional Rasch analyses: one for the ICF categories from body functions and body structures components and another for the ICF categories from the activities and participation component.

Results

Results support good reliability and targeting of the ICF categories in both dimensions. In each dimension, few ICF categories were subject to misfit. Local item dependency was observed between ICF categories of the same chapters. Group effects for age and sex were observed only to a small extent.

Conclusions

The validity of ICF categories to develop measures of functioning in SCI for clinical practice and research is to some extent supported. Model adjustments were suggested to further improve their operationalization and psychometrics.     

Determining the Most Robust Dimensional Structure of Categories from the International Classification of Functioning,Disability and Health Across Subgroups of Persons With Spinal Cord Injury to Build the Basis for Future Clinical Measures

Objective

To determine the most robust dimensional structure of the International Classification of Functioning, Disability and Health (ICF) categories relevant to spinal cord injury (SCI) across subgroups of lesion level, health care context, sex, age, and resources of the country.

Design

A multidimensional between-item response Rasch model was used. The choice of the dimensions was conceptually driven using the ICF components from the functioning chapters and splits of the activity and participation component described in the ICF.

Setting

Secondary analysis of data from an international, cross-sectional, multicentric study for the Development of ICF Core Sets for Spinal Cord Injury.

Participants

Persons with SCI (N=1048) from the early postacute and long-term living context from 14 middle/low- and high-resource countries.

Interventions

Not applicable.

Main Outcome Measure

Ratings of categories of the ICF relevant for SCI were analyzed.

Results

Five models were tested on the complete sample and 5 subgroups. The overall reliability of all models and reliability within dimensions of the unidimensional and 2-dimensional models were good to excellent. The ICF categories spread well along the disability scale. The model fit improvement from the unidimensional to the 2-dimensional and from the 2-dimensional to the 3-dimensional model was significant in all groups (P<.0001). The improvement, however, from a unidimensional to a 2-dimensional structure was markedly better than from a 2-dimensional to a 3-dimensional one.

Conclusions

We propose that a 2-dimensional structure separating body functions and body structures from the activity and participation categories should serve as a basis for developing clinical measures in SCI in the future.     

Health Conditions: Effect on Function,Health-Related Quality of Life,and Life Satisfaction After Traumatic Spinal Cord Injury. A Prospective Observational Registry Cohort Study

Objective

To analyze relations among injury, demographic, and environmental factors on function, health-related quality of life (HRQoL), and life satisfaction in individuals with traumatic spinal cord injury (SCI).

Describing Functioning in People Living With Spinal Cord Injury in Switzerland: A Graphical Modeling Approach

Objective

To describe functioning in people living with spinal cord injuries (SCI) in Switzerland.

Impact of Blood Pressure Dysregulation on Health-Related Quality of Life in Persons With Spinal Cord Injury: Development of a Conceptual Model

Objectives

To identify medically relevant aspects of blood pressure dysregulation (BPD) related to quality of life in individuals with spinal cord injury (SCI), and to propose an integrated conceptual framework based on input from both individuals with SCI and their clinical providers. This framework will serve as a guide for the development of a patient-reported outcome (PRO) measure specifically related to BPD.

Design

Three focus groups with individuals with SCI and 3 groups with SCI providers were analyzed using grounded-theory based qualitative analysis to ascertain how blood pressure impacts health-related quality of life (HRQOL) in individuals with SCI.

Setting

Focus groups were conducted at 2 Veterans Affairs medical centers and a research center.

Participants

Individuals with SCI (n=27) in 3 focus groups and clinical providers (n=25) in 3 focus groups.

Interventions

Not applicable.

Main Outcome Measures

Not applicable.

Results

Qualitative analysis indicated that all focus groups spent the highest percentage of time discussing symptoms of BPD (39%), followed by precipitators/causes of BPD (16%), preventative actions (15%), corrective actions (12%), and the impact that BPD has on social or emotional functioning (8%). While patient/consumer focus groups and provider focus groups raised similar issues, providers spent more time discussing precipitators/causes of BPD and preventative actions (38%) than patient/consumer groups (24%).

Conclusions

These results suggest that BPD uniquely and adversely impacts HRQOL in persons with SCI. While both individuals with SCI and their providers highlighted the relevant symptoms of BPD, the SCI providers offered additional detailed information regarding the precipitators/causes and what can be done to prevent/treat BPD. Further, the results suggest that persons with SCI are aware of how BPD impacts their HRQOL and are able to distinguish between subtle signs and symptoms. These findings exemplify the need for a validated and sensitive clinical measurement tool that can assess the extent to which BPD impacts HRQOL in patients with SCI.     

Spinal Cord Injury Peer Mentorship: Applying Self-Determination Theory to Explain Quality of Life and Participation

Objectives

To investigate the role of spinal cord injury (SCI) peer mentorship on quality of life (QoL)/participation, and test a self-determination theory model that explains the role of SCI peer mentorship on these outcomes.

Incidence,Prevalence, Costs,and Impact on Disability of Common Conditions Requiring Rehabilitation in the United States: Stroke,Spinal Cord Injury,Traumatic Brain Injury,Multiple Sclerosis,Osteoarthritis, Rheumatoid Arthritis,Limb Loss,and Back Pain

Objective

To determine the relative incidence, prevalence, costs, and impact on disability of 8 common conditions treated by rehabilitation professionals.

Data Sources

Comprehensive bibliographic searches using MEDLINE, Google Scholar, and UpToDate, (June, 2013).

Data Extraction

Two review authors independently screened the search results and performed data extraction. Eighty-two articles were identified that had relevant data on the following conditions: Stroke, Spinal Cord Injury, Traumatic Brain Injury, Multiple Sclerosis, Osteoarthritis, Rheumatoid Arthritis, Limb Loss, and Back Pain.

Data Synthesis

Back pain and arthritis (osteoarthritis, rheumatoid arthritis) are the most common and costly conditions we analyzed, affecting more than 100 million individuals and costing greater than $200 billion per year. Traumatic brain injury, while less common than arthritis and back pain, carries enormous per capita direct and indirect costs, mostly because of the young age of those involved and the severe disability that it may cause. Finally, stroke, which is often listed as the most common cause of disability, is likely second to both arthritis and back pain in its impact on functional limitations.

Conclusions

Of the common rehabilitation diagnoses we studied, musculoskeletal conditions such as back pain and arthritis likely have the most impact on the health care system because of their high prevalence and impact on disability.     

The Burden of Traumatic Spinal Cord Injury in the United States: Disability-Adjusted Life Years

Objective

To quantify the burden of traumatic spinal cord injury (SCI) as defined by nonfatal health loss and premature mortality among a large sample of participants over a 44-year period, and estimate the national burden of SCI in the United States for the year 2010.

Construct validity of the items on the Stroke Specific Quality of Life (SS-QOL) questionnaire that evaluate the participation component of the International Classification of Functioning,Disability and Health

Purpose: Analyze the construct validity and internal consistency of the Stroke Specific Quality of Life (SS-QOL) items that address the participation component of the ICF as well as analyze the ceiling and floor effects.

Methods: One hundred subjects were analyzed: 85 community-dwelling and 15 institutionalized individuals. The analysis of construct validity was performed using classic psychometrics: (1) the comparison of known groups (individuals without restriction to participation vs. those with restriction to participation) using the Mann–Whitney test and (2) convergent validity – correlation between the scores on the SS-QOL items that address participation and the subscale scores of measures used to evaluate the similar constructs and concepts [the Short-Form Health Survey (SF-36), Functional Independence Measure (FIM) and grip strength test]. Spearman’s correlation coefficients were calculated for this analysis. Cronbach’s α was used for the analysis of internal consistency and both the ceiling and floor effects were analyzed. The level of significance for all analyses was α?=?0.05.

Results: The a priori hypotheses regarding construct validity were partially demonstrated, as only five of the eight domains exhibited positive moderate to strong correlations (r?>?0.40) with measures that address constructs similar to those addressed on the SS-QOL questionnaire. The items demonstrated adequate internal consistency and are capable of differentiating individuals with and without restriction to participation. The ceiling and floor effects were considered adequate for the total SS-QOL score, but beyond acceptable standards for some domains.

Conclusions: The 26 items of the SS-QOL questionnaire measure a multidimensional construct and therefore do not only address participation. However, the items demonstrated adequate internal consistency and are capable of differentiating individuals with and without restriction to participation.

• Implications for rehabilitation

• The 26 items of the SS-QOL questionnaire demonstrated adequate internal consistency and are capable of differentiating individuals with and without restriction to participation.

• The present findings can guide healthcare professionals regarding the selection of an assessment tool for the evaluation of post-stroke participation.

• The findings can lead to consistent and standardization evaluations, which facilitates comparisons and discussion on functional health and social participation after stroke.

     

Relationship of Fitness and Wheelchair Mobility With Encounters,Avoidances, and Perception of Environmental Barriers Among Manual Wheelchair Users With Spinal Cord Injury

Objective

To assess (1) if fitness and mobility are related to behavior and perception of physical barriers and (2) if behavior and physical barrier perception are related.

National Institutes of Health Toolbox Emotion Battery: Application of Summary Scores to Adults With Spinal Cord Injury,Traumatic Brain Injury,and Stroke

ObjectiveTo examine the validity of factor analytically based summary scores that were developed using the National Institutes of Health Toolbox Emotion Battery (NIHTB-EB); (ie, psychological well-being, social satisfaction, negative affect) normative sample in individuals with neurologic conditions.DesignCross-sectional, observational cohort.SettingCommunity.ParticipantsA total of 1036 English-speaking adults from the National Institutes of Health Toolbox (NIHTB) normative project and 604 community-dwelling adults with neurologic conditions including spinal cord injury (SCI n=209), traumatic brain injury (TBI n=184), and stroke (cerebrovascular accident [CVA] n=211) (N=1640).InterventionNot applicable.Main Outcome MeasuresThe NIHTB-EB.ResultsA series of univariate analyses comparing summary scores across the 4 groups (SCI, TBI, CVA, normative group) were conducted to identify group differences. Base rates (defined as >1 SD toward the problematic direction) were also identified. The normative group demonstrated better emotional functioning characterized by greater social satisfaction and psychological well-being (normative group > SCI, TBI, CVA; P’s <.0001), and less negative affect (normative group < SCI, P=.016; normative group < TBI, P<.001; normative group < CVA; P=.034) compared with each neurologic group. Using base rates to identify problematic emotions for the 3 summary scores, there were higher rates of problematic emotions on all 3 summary scores for the neurologic groups compared with the normative group.ConclusionsThe NIHTB-EB summary scores demonstrate an increased prevalence of problematic emotions among individuals with 3 neurologic conditions, and might be useful for identifying individuals with similar conditions and potentially in need of psychological support.     

Quality of Life and Adaptation in People With Spinal Cord Injury: Response Shift Effects From 1 to 5 Years Postinjury

Objective

To investigate response shift effects in spinal cord injury (SCI) over 5 years postinjury.

Transforming a Traumatic Brain Injury Measure of Participation Into a Psychometrically Sound Spinal Cord Injury Participation Measure

ObjectiveTo evaluate the use of Participation Assessment with Recombined Tools–Objective (PART-O) in spinal cord injury (SCI) and compare it with the Craig Handicap Assessment and Reporting Technique–Short Form (CHART-SF).DesignFollow-up survey of inception cohort.SettingCommunity.ParticipantsIndividuals with SCI, rehabilitated at 2 large SCI Model Systems and enrolled in the SCI Model Systems National Database, who were due for routine follow-up (N=468; median age at injury, 29; median time post injury, 5 years).InterventionsNot applicable.Main Outcome MeasuresPART-O and CHART-SF.ResultsUse of Rasch analysis identified an SCI-specific scoring of PART-O that demonstrated unidimensionality (first contrast eigenvalue of 1.76) with no misfitting items or disordered steps in any response categories. Person separation and reliability were 2.00 and .80, respectively. Unlike CHART-SF, PART-O had a relatively normal distribution with no floor or ceiling effects. Test-retest reliability PART-O administered 2-4 weeks apart was 0.97, with a reliable change index of 3.1 points on a 100-point scale. PART-O correlated 0.79 with the sum of 3 CHART-SF domains with similar content. The PART-O scoring was initially validated on a second data set.ConclusionsPART-O can be used successfully to measure participation in a population of people with SCI. A new method of scoring PART-O in SCI provides an initially validated, univariate interval measure of participation with good psychometric properties that has advantages over the CHART-SF legacy measure of participation.     

Mobility Device Quality Affects Participation Outcomes for People With Disabilities: A Structural Equation Modeling Analysis

Objective

To test the effect that indicators of mobility device quality have on participation outcomes in community-dwelling adults with spinal cord injury, traumatic brain injury, and stroke by using structural equation modeling.

Concentration of Costs Among High Utilizers of Health Care Services Over the First 10 Years After Spinal Cord Injury Rehabilitation: A Population-based Study

Objective

The purpose of this study was to (1) categorize individuals into high, medium, and low utilizers of health care services over a 10-year period after the onset of spinal cord injury (SCI) and (2) identify the pattern of causes of hospitalizations and the characteristics associated with high utilization.

Current State of Knowledge on Digital Rectal Stimulation in Individuals With Traumatic and Nontraumatic Spinal Cord Injury: A Scoping Review

ObjectivesTo map and characterize the nature of the evidence on the use of digital rectal stimulation for bowel management in individuals with spinal cord injury (SCI).Data SourcesFive electronic databases were searched (ie, MEDLINE, EMBASE, CINAHL, Cochrane CENTRAL, and Cochrane Incontinence Group) from 1990 to November 2019.Study SelectionArticles that provided information on the use of digital rectal stimulation either alone or in combination with treatments were included. Title and abstract screening was split between 2 reviewers after reaching consensus on the first 100 studies screened. Full-texts were reviewed independently by 2 reviewers. Discrepancies were resolved by a third reviewer.Data ExtractionThe data extraction form was developed by 2 reviewers and piloted. Data were extracted by one reviewer and checked for accuracy by a second reviewer.Data SynthesisA total of 4841 studies were screened, including 425 full text articles; 33 articles were identified. Thirty-two studies focused solely on individuals with SCI and 1 study explored the experiences of caregivers of individuals with SCI. The majority of participants were aged between 30 and 59 years old. Most studies used quantitative methods (n=30, 91%). Fourteen of the studies (42%) were cross-sectional. Within experimental or quasiexperimental designs, digital rectal stimulation was commonly studied as an adjunct to other methods such as suppositories or enemas. Incontinence and defecation time were the most commonly examined outcomes.ConclusionThere were few studies found that focus on digital rectal stimulation. Further studies examining experience, effectiveness, complications, and long-term outcomes are warranted.     

Brain Injury Functional Outcome Measure (BI-FOM): A Single Instrument Capturing the Range of Recovery in Moderate-Severe Traumatic Brain Injury

ObjectiveTo develop a measure of global functioning after moderate-severe TBI with similar measurement precision but a longer measurement range than the FIM.DesignPhase 1: retrospective analysis of 5 data sets containing FIM, Disability Rating Scale, and other assessment items to identify candidate items for extending the measurement range of the FIM; Phase 2: prospective administration of 49 candidate items from phase 1, with Rasch analysis to identify a unidimensional scale with an extended range.SettingSix TBI Model System rehabilitation hospitals.ParticipantsIndividuals (N=184) with moderate-severe injury recruited during inpatient rehabilitation or at 1-year telephone follow-up.InterventionsParticipants were administered the 49 assessment items in person or via telephone.Main Outcome MeasuresItem response theory parameters: item monotonicity, infit/outfit statistics, and Factor 1 variance.ResultsAfter collapsing misordered rating categories and removing misfitting items, we derived the Brain Injury Functional Outcome Measure (BI-FOM), a 31-item assessment instrument with high reliability, greatly extended measurement range, and improved unidimensionality compared with the FIM.ConclusionsThe BI-FOM improves global measurement of function after moderate-severe brain injury. Its high precision, relative lack of floor and ceiling effects, and feasibility for telephone follow-up, if replicated in an independent sample, are substantial advantages.     

Comprehensive ADL Outcome Measurement after Stroke: Rasch Validation of the Lucerne ICF-Based Multidisciplinary Observation Scale (LIMOS)

ObjectiveTo establish Rasch validation of the Lucerne International Classification of Functioning, Disability and Health (ICF)-based Multidisciplinary Observation Scale (LIMOS) in stroke. LIMOS measures the level of assistance in daily life activities related to motor function, communication, cognition, and domestic life. Rasch Measurement Theory (RMT) transforms an ordinal scale into an interval scale and thus the Rasch-based LIMOS scale captures a more accurate improvement of functional outcomes via Rasch-transformed scores.DesignCross-sectional study design.SettingNeurorehabilitation center, Luzerne, Switzerland.ParticipantsWe recruited participants with stroke (N=407; age=63.2±16.0y; n=157 women) through consecutive sampling.InterventionsNot applicable.Main Outcome MeasuresParticipants were assessed with LIMOS at admission and discharge of rehabilitation. We used RMT to evaluate overall model fit, response dependency, floor and ceiling effect, reliability, and differential item functioning (DIF) for sex, age, type, and time of stroke on the 4 LIMOS subscales using the Rasch Unidimensional Measurement Model (RUMM) 2030 program.ResultsThe Rasch-based LIMOS subscales fit the Rasch model after reducing and rescoring items: motor (from 20 to 18 items), communication (5 items), cognition (from 15 to 13 items), and domestic life (5 items). There was no floor or ceiling effect. Some artificial DIF was identified. Scoring at discharge was dependent on the scoring responses at admission, which means that without applying a correction factor to the discharge scores, there was an underestimation of change in scores between admission and discharge, ranging from 0.24 to 0.97 logits (10.79%-49.24%) on the different subscales.ConclusionsThe Rasch-based LIMOS scale is recommended to measure functional outcome in people with acute or chronic stages of ischemic or hemorrhagic stroke.     

Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors

ObjectiveTo describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland.DesignCross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation.SettingCommunity.ParticipantsSwiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549).InterventionsNot applicable.Main Outcome MeasureThe USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social).ResultsFrequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education.ConclusionsThis study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.