Item Banks for Measuring the Effect of Blood Pressure Dysregulation on Health-Related Quality of Life in Persons With Spinal Cord Injury.

OBJECTIVE: To report on the development and calibration of the new Blood Pressure Dysregulation Measurement System (BPD-MS) item banks that assess the effect of BPD on health-related quality of life (HRQOL) and the daily activities of Veterans and non-Veterans with spinal cord injury (SCI). DESIGN: Cross-sectional survey study. SETTING: Two Veteran Affairs medical centers and a SCI model system site. PARTICIPANTS: 454 respondents with SCI (n=262 American Veterans and n=192 non-Veterans; N=454). INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: The BPD-MS item banks. RESULTS: BPD item pools were developed and refined using literature reviews, qualitative data from focus groups, and cognitive debriefing of persons with SCI and professional caregivers. The item banks then underwent expert review, reading level assessment, and translatability review prior to field testing. The items pools consisted of 180 unique questions (items). Exploratory and confirmatory factor analyses, item response theory modeling, and differential item function investigations resulted in item banks that included a total of 150 items: 75 describing the effect of autonomic dysreflexia on HRQOL, 55 describing the effect of low blood pressure (LBP) on HRQOL, and 20 describing the effect of LBP on daily activities. In addition, 10-item short forms were constructed based on item response theory-derived item information values and the clinical relevance of item content. CONCLUSIONS: The new BPD-MS item banks and corresponding 10-item short forms were developed using established rigorous measurement development standards, which represents the first BPD-specific patient-reported outcomes measurement system unique for use in the SCI population.

Applying a Bookmarking Approach to Setting Clinically Relevant Interpretive Standards for the Spinal Cord Injury-Functional Index/Capacity Basic Mobility and Self-Care Item Bank Scores.

OBJECTIVES: To develop clinically relevant interpretive standards for the Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) Basic Mobility and Self-Care item bank scores. DESIGN: Modified "bookmarking" standard-setting methodology, including 2 stakeholder consensus meetings with individuals with spinal cord injury (SCI) and SCI clinicians, respectively, and a final, combined (consumers and clinicians) "convergence" meeting. SETTING: Two SCI Model System centers in the United States. PARTICIPANTS: Fourteen adults who work with individuals with traumatic SCI and 14 clinicians who work with individuals with SCI. MAIN OUTCOME MEASURES: Placement of bookmarks between vignettes based on SCI-FI Basic Mobility and Self-Care T scores. Bookmarks were placed between vignettes representing "No Problems," "Mild Problems," "Moderate Problems," and "Severe Problems" for each item bank. RESULTS: Each consensus group resulted in a single set of scoring cut points for the SCI-FI/C Basic Mobility and Self-Care item banks. The cut points were similar but not identical between the consumer and clinician groups, necessitating a final convergence meeting. For SCI-FI/C Basic Mobility, the convergence group agreed on cut scores of 61.25 (no problems/mild problems), 51.25 (mild problems/moderate problems), and 41.25 (moderate problems/severe problems). For SCI-FI/C Self-Care, the convergence group agreed on cut scores of 56.25 (no/mild), 51.25 (mild/moderate), and 38.75 (moderate/severe). CONCLUSIONS: The results of this study provide straightforward interpretive guidelines for SCI researchers and clinicians using the SCI-FI/C Basic Mobility and Self-Care instruments. These results are appropriate for the full bank, computer adaptive test, and short-form versions of the SCI-FI/C Basic Mobility and Self-Care item banks.

Validation of the Spinal Cord Injury-Functional Index for Use in Community-Dwelling Individuals With SCI.

OBJECTIVE: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index (SCI-FI) instruments in a community-dwelling sample. DESIGN: Cross-sectional study. SETTING: Community setting. PARTICIPANTS: Individuals (N=269) recruited from 6 SCI Model Systems sites. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Participants completed computer adaptive test and short form versions of 4 SCI-FI/Capacity (C) banks (ie, Ambulation, Basic Mobility, Fine Motor, Self-Care) and 1 SCI-FI/Assistive Technology (AT) bank (Wheelchair Mobility) at baseline and after 2 weeks. The Self-Report Functional Measure (SRFM) and the clinician-rated motor FIM were used to evaluate evidence of convergent validity. RESULTS: Pearson correlations, intraclass correlation coefficients, minimal detectable change, and Bland-Altman plots supported the test-retest reliability of the SCI-FI instruments. Correlations were large with the SRFM (.69-.89) and moderate-to-large for the FIM instrument (.44-.64), supporting convergent validity. Known-groups validity was demonstrated by a significant main effect of injury level on all instruments and a main effect of injury completeness on the SCI-FI/C instruments. A ceiling effect was detected for individuals with incomplete paraplegia on the Fine Motor/C and Self-Care/C Short Forms. CONCLUSION: Findings support the test-retest reliability, convergent validity, and known-groups validity of the SCI-FI/C instruments and the SCI-FI/AT Wheelchair Mobility instruments for use by community-dwelling individuals.

Factors Influencing Incidence of Wheelchair Repairs and Consequences Among Individuals with Spinal Cord Injury.

OBJECTIVE: To investigate the frequency and consequences of wheelchair repairs, looking at the relationship to usage, components, out-of-pocket costs, number of days affecting the user, and factors associated with the need for repairs or consequences. DESIGN: Survey, cross-sectional. SETTING: Nine spinal cord injury (SCI) Model Systems centers. PARTICIPANTS: Wheelchair users with SCI (N=533). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Cost and incidence of wheelchair repairs and consequences and wheelchair usage within the past 6 months. RESULTS: A total of 310 participants (56%) reported repairs, 127 (42%) of whom experienced at least 1 adverse consequence lasting a median of 5 days (interquartile range [IQR], 2-17.3 days). Repair rates were highest for the seating system, electronics, and tires. Participants were most often stranded at home or forced to use a backup chair. Median out-of-pocket costs were $150 (IQR, $50-$620). Active users, based on type of mobility and terrain, experienced more repairs and consequences than less active users. Repairs were more common among those who were Black (odds ratio [OR], 2.42) or power wheelchair (PWC) users (OR, 1.84), whereas consequences were more common among those who were Black (OR, 2.27), PWC (OR, 2.08) or power assist users (OR, 2.76), and those who had public insurance (OR, 1.70). CONCLUSIONS: Wheelchair repairs continue to affect more than 50% of wheelchair users with significant financial and personal cost. High repair rates limited participation inside and outside of the home. Consequences lasted longer than 2 weeks for many and may be minimized by a working backup chair. Disparities exist based on participant and wheelchair factors; repairs and adverse consequences appear to hit those most vulnerable with the least financial resources. Costs may be a barrier to repair completion for some individuals. This ongoing problem of high repair rates and their associated effects requires action such as higher standards, access to quicker service, and better training of users on wheelchair maintenance and repair.

Physical Function Recovery Trajectories After Spinal Cord Injury.

OBJECTIVE: To explore trajectories of functional recovery that occur during the first 2 years after spinal cord injury (SCI). DESIGN: Observational cohort study. SETTING: Eight SCI Model System sites. PARTICIPANTS: A total of 479 adults with SCI completed 4 Spinal Cord Injury-Functional Index (SCI-FI) item banks within 4 months of injury and again at 2 weeks, 3, 6, 12, and 24 months after baseline assessment (N=479). INTERVENTION: None. MAIN OUTCOME MEASURES: SCI-FI Basic Mobility/Capacity (C), Fine Motor Function/C, Self-care/C, and Wheelchair Mobility/Assistive Technology (AT) item banks. RESULTS: Growth mixture modeling was used to identify groups with similar trajectory patterns. For the Basic Mobility/C and Wheelchair Mobility/AT domains, models specifying 2 trajectory groups were selected. For both domains, a majority class exhibited average functional levels and gradual improvement, primarily in the first 6 months. A smaller group of individuals made gradual improvements but had greater initial functional limitations. The Self Care/C domain exhibited a similar pattern; however, a third, small class emerged that exhibited substantial improvement in the first 6 months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed 2 patterns, with individuals reporting generally low initial scores and then making either modest or large improvements. In individual growth curve models, injury/demographic factors predicted initial functional levels but less so regarding rates of recovery. CONCLUSIONS: Trajectories of functional recovery followed a small number of change patterns, although variation around these patterns emerged. During the first 2 years after initial hospitalization, SCI-FI scores showed modest improvements; however, substantial improvements were noted for a small number of individuals with severe limitations in fine motor and self-care function. Future studies should further explore the personal, medical, and environmental characteristics that influence functional trajectories during these first 2 years and beyond.

Spinal Cord Injury-Functional Index/Capacity: Responsiveness to Change Over Time.

OBJECTIVE: To establish responsiveness of 3 Spinal Cord Injury-Functional Index/Capacity (SCI-FI/C) item banks in the first year after spinal cord injury (SCI). DESIGN: Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set. SETTING: A total of 8 SCI Model Systems rehabilitation hospitals in the United States. PARTICIPANTS: Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury) (N=405). Study 2 participants were 418 individuals with recent SCI (≤4 months) (N=418). INTERVENTIONS: In study 1, SCI-FI/C computer adaptive tests were presented in a standardized interview format either in person or by phone call at baseline and 6-month follow-up. Responsiveness was examined by comparing 6-month changes in SCI-FI scores within and across samples (recently injured vs community-dwelling) because only the recent injury sample was expected to exhibit change over time. Effect sizes were also computed. In study 2, the study 1 results were cross-validated in a second sample with recent SCI 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures' responsiveness to that of the Self-reported Functional Measure (SRFM) and stratified results by injury diagnosis and completeness. MAIN OUTCOME MEASURES: The SCI-FI Basic Mobility/C, Self-care/C and Fine Motor/C item banks (study 1 and study 2); Self-reported Functional Measure SRFM (study 2 only). RESULTS: In study 1, changes in SCI-FI/C scores between baseline and 6-month follow-up were statistically significant (P<.01) for recently injured individuals. SCI-FI Basic Mobility/C, Self-care/C, and Fine Motor/C item banks demonstrated small to medium effect sizes in the recently injured sample. In the community-dwelling sample, all SCI-FI/C effects were negligible (ie, effect size<0.08). Study 2 results were similar to study 1. As expected, SCI-FI Basic Mobility/C and Self-care/C were responsive to change for all individuals in study 2, whereas the SCI-FI Fine Motor/C was responsive only for individuals with tetraplegia and incomplete paraplegia. The SRFM demonstrated a medium effect size for responsiveness (effect size=0.65). CONCLUSIONS: The SCI-FI Basic Mobility/C and Self-care/C banks demonstrate adequate sensitivity to change at 6 months and 1 year for all individuals with SCI, while the SCI-FI/C Fine Motor item bank is sensitive to change in individuals with tetraplegia or incomplete paraplegia. All SCI-FI/C banks demonstrate stability in a sample not expected to change. Results provide support for the use of these measures for research or clinical use.

Assistive Technology Workplace Accommodation and Employment among Diverse Populations with Disabilities: Does Race/Ethnicity Matter?

The purpose of this study was to examine the relationship between assistive technology workplace accommodation (AT-WA) usage and employment status among racial/ethnic populations with disabilities. Chi-square tests and logistic regression were used to analyze secondary data from the 2015 Kessler Foundation National Employment and Disability Survey (KFNEDS). Results indicated that significantly more consumers who used AT-WA were currently working, and a significantly greater proportion of them were White. Moreover, a significantly lower proportion of those who did not use AT-WA had less expected odds of being currently employed. Specific implications are discussed to inform practices, policy, and/or future research.

A Cross-Sectional Study to Investigate the Effects of Perceived Discrimination in the Health Care Setting on Pain and Depressive Symptoms in Wheelchair Users With Spinal Cord Injury.

OBJECTIVES: In a sample of wheelchair users with spinal cord injury (SCI), the objectives were to investigate which participant characteristics are associated with greater perceived discrimination in the health care setting, and how such discrimination relates to health outcomes of pain and depressive symptoms. DESIGN: Survey, cross-sectional. SETTING: Spinal Cord Injury Model Systems (SCIMS) Center. PARTICIPANTS: Full-time wheelchair users with SCI from 9 SCIMS centers (N=410), with data collected between 2011 and 2016. INTERVENTIONS: N/A. MAIN OUTCOMES: A 7-item questionnaire inquiring about perceived discrimination by hospital staff, self-reported pain severity over the past month using a 0-10 Numeric Rating Scale, and depressive symptoms using the 2-question Patient Health Questionnaire screener. RESULTS: Participants who were black or from the lowest income group were more likely to report experiencing more discrimination than those who were white or from the highest income group, respectively (incidence rate ratio=2.2-2.6, P<.01). Those who reported more perceived discrimination had greater risk of severe pain compared to no pain (relative risk [RR]=1.11; 95% confidence interval [95% CI], 1.01-1.23; P<.05), mild depressive symptoms (RR=1.09; 95% CI, 1.02-1.17; P<.05), and severe depressive symptoms (RR=1.12; 95% CI, 1.04-1.21; P<.05) compared to no symptoms. CONCLUSIONS: Wheelchair users with SCI who were from more disadvantaged groups (black, lower income levels) reported experiencing more discrimination in their health care setting. Furthermore, those who reported more discrimination were more likely to report worse mental and physical health outcomes. Attempts to reduce discrimination in health care settings may lead to better outcomes for people with SCI. These observations were correlational and not causal; a prospective analysis is necessary to prove causation. Future investigations should further explore the effect of discrimination on the many facets of living with an SCI.

Sensitivity of the SCI-FI/AT in Individuals With Traumatic Spinal Cord Injury.

OBJECTIVE: To examine the ability of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) measure to detect change in persons with spinal cord injury (SCI). DESIGN: Multisite longitudinal (12-mo follow-up) study. SETTING: Nine SCI Model Systems programs. PARTICIPANTS: Adults (N=165) with SCI enrolled in the SCI Model Systems database. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: SCI-FI/AT computerized adaptive test (CAT) (Basic Mobility, Self-Care, Fine Motor Function, Wheelchair Mobility, and/or Ambulation domains) completed at discharge from rehabilitation and 12 months after SCI. For each domain, effect size estimates and 95% confidence intervals were calculated for subgroups with paraplegia and tetraplegia. RESULTS: The demographic characteristics of the sample were as follows: 46% (n=76) individuals with paraplegia, 76% (n=125) male participants, 57% (n=94) used a manual wheelchair, 38% (n=63) used a power wheelchair, 30% (n=50) were ambulatory. For individuals with paraplegia, the Basic Mobility, Self-Care, and Ambulation domains of the SCI-FI/AT detected a significantly large amount of change; in contrast, the Fine Motor Function and Wheelchair Mobility domains detected only a small amount of change. For those with tetraplegia, the Basic Mobility, Fine Motor Function, and Self-Care domains detected a small amount of change whereas the Ambulation item domain detected a medium amount of change. The Wheelchair Mobility domain for people with tetraplegia was the only SCI-FI/AT domain that did not detect significant change. CONCLUSIONS: SCI-FI/AT CAT item banks detected an increase in function from discharge to 12 months after SCI. The effect size estimates for the SCI-FI/AT CAT vary by domain and level of lesion. Findings support the use of the SCI-FI/AT CAT in the population with SCI and highlight the importance of multidimensional functional measures.

To What Extent Do Neighborhood Differences Mediate Racial Disparities in Participation After Spinal Cord Injury?

OBJECTIVE: To examine the role of residential neighborhood characteristics in accounting for race disparities in participation among a large sample of community-living adults with chronic spinal cord injury (SCI). DESIGN: Secondary analysis of cross-sectional survey data from the national Spinal Cord Injury Model Systems (SCIMS) database linked with national survey and spatial data. SETTING: SCIMS database participants enrolled at 10 collaborating centers active in follow-up between 2000 and 2014. PARTICIPANTS: The sample consisted of persons with SCI (N=6892) in 5441 Census tracts from 50 states and the District of Columbia. INTERVENTION: Not applicable. MAIN OUTCOME MEASURE: The Craig Handicap Assessment and Reporting Technique was used to measure full participation across 4 domains: physical independence, mobility, occupation, and social integration. RESULTS: Racial minority groups had lower odds of reporting full participation relative to whites across all domains, suggesting that blacks and Hispanics are at risk for poorer community reintegration after SCI. Neighborhood characteristics, notably differences in socioeconomic advantage, reduced race group differences in the odds of full occupational and social integration, suggesting that the race disparities in community reintegration after SCI are partially attributable to variation in the economic characteristics of the places where people live. CONCLUSIONS: This investigation suggests that addressing disadvantage at the neighborhood level may modify gaps in community participation after medical rehabilitation and provides further support for the role of the environment in the experience of disability.

Spinal Cord Injury-Functional Index/Assistive Technology Short Forms.

OBJECTIVES: To evaluate the psychometric properties of the Spinal Cord Injury-Functional Index/Assistive Technology (SCI-FI/AT) short forms (SFs) in the domains of basic mobility, self-care, fine motor function, and ambulation based on internal consistency; correlations between SFs and full item banks, and a 10-item computerized adaptive test (CAT) version; magnitude of ceiling and floor effects; and measurement precision across a broad range of function in a sample of adults with spinal cord injury (SCI). DESIGN: Cross-sectional cohort study. SETTING: Nine national Spinal Cord Injury Model Systems programs. PARTICIPANTS: A sample of adults with traumatic SCI (N=460) stratified by level of injury (paraplegia/tetraplegia), completeness of injury, and time since SCI. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: SCI-FI/AT full item bank, 10-item CAT, and SFs (with separate Self-Care and Fine Motor Function SFs for persons with tetraplegia and paraplegia). RESULTS: The SCI-FI/AT SFs demonstrated very good internal consistency, group-level reliability, and excellent correlations between SFs and scores based on the CAT version and the total item bank. Ceiling and floor effects are acceptable (except for unacceptable ceiling effects for persons with paraplegia on the Self-Care and Fine Motor Function SFs). The test information functions are excellent across a broad range of functioning typical of persons with paraplegia and tetraplegia. CONCLUSIONS: Clinicians and researchers should consider using the SCI-FI/AT SFs to assess functioning with the use of assistive technology when CAT applications are not available.

Differential item functioning due to cognitive status does not impact depressive symptom measures in four heterogeneous samples of older adults.

OBJECTIVE: The objective of this study is to determine whether differential item functioning (DIF) due to cognitive status impacted three depressive symptoms measures commonly used with older adults. METHODS: Differential item functioning in depressive symptoms was assessed among participants (N = 3558) taking part in four longitudinal studies of cognitive aging, using the Geriatric Depression Scale, the Montgomery-Åsberg Depression Rating Scale, and the Center for Epidemiologic Studies Depression Scale. Participants were grouped by cognitive status using a general cognitive performance score derived from each study's neuropsychological battery and linked to a national average using a population-based survey representative of the US population. The Clinical Dementia Rating score was used as an alternate grouping variable in three of the studies. RESULTS: Although statistically significant DIF based on cognitive status was found for some depressive symptom items (e.g., items related to memory complaints, appetite loss, lack of energy, and mood), the effect of item bias on the total score for each scale was negligible. CONCLUSIONS: The depressive symptoms scales in these four studies measured depression in the same way, regardless of cognitive status. This may reduce concerns about using these depression measures in cognitive aging research, as relationships between depression and cognitive decline are unlikely to have been due to item bias, at least in the ways that were measured in the datasets we considered.

Demographic characteristics do not decrease the utility of depressive symptoms assessments: examining the practical impact of item bias in four heterogeneous samples of older adults.

OBJECTIVE: Previous studies have identified differential item function (DIF) in depressive symptoms measures, but the impact of DIF has been rarely reported. Given the critical importance of depressive symptoms assessment among older adults, we examined whether DIF due to demographic characteristics resulted in salient score changes in commonly used measures. METHODS: Four longitudinal studies of cognitive aging provided a sample size of 3754 older adults and included individuals both with and without a clinical diagnosis of major depression. Each study administered at least one of the following measures: the Center for Epidemiologic Studies Depression scale (20-item ordinal response or 10-item dichotomous response versions), the Geriatric Depression Scale, and the Montgomery-Åsberg Depression Rating Scale. Hybrid logistic regression-item response theory methods were used to examine the presence and impact of DIF due to age, sex, race/ethnicity, and years of education on the depressive symptoms items. RESULTS: Although statistically significant DIF due to demographic factors was present on several items, its cumulative impact on depressive symptoms scores was practically negligible. CONCLUSIONS: The findings support substantive meaningfulness of previously reported demographic differences in depressive symptoms among older adults, showing that these individual differences were unlikely to have resulted from item bias attributable to demographic characteristics we examined.

Development and initial evaluation of the SCI-FI/AT.

OBJECTIVES: To describe the domain structure and calibration of the Spinal Cord Injury Functional Index for samples using Assistive Technology (SCI-FI/AT) and report the initial psychometric properties of each domain. DESIGN: Cross sectional survey followed by computerized adaptive test (CAT) simulations. SETTING: Inpatient and community settings. PARTICIPANTS: A sample of 460 adults with traumatic spinal cord injury (SCI) stratified by level of injury, completeness of injury, and time since injury. INTERVENTIONS: None MAIN OUTCOME MEASURE: SCI-FI/AT RESULTS: Confirmatory factor analysis (CFA) and Item response theory (IRT) analyses identified 4 unidimensional SCI-FI/AT domains: Basic Mobility (41 items) Self-care (71 items), Fine Motor Function (35 items), and Ambulation (29 items). High correlations of full item banks with 10-item simulated CATs indicated high accuracy of each CAT in estimating a person's function, and there was high measurement reliability for the simulated CAT scales compared with the full item bank. SCI-FI/AT item difficulties in the domains of Self-care, Fine Motor Function, and Ambulation were less difficult than the same items in the original SCI-FI item banks. CONCLUSION: With the development of the SCI-FI/AT, clinicians and investigators have available multidimensional assessment scales that evaluate function for users of AT to complement the scales available in the original SCI-FI.

Overview of the Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system.

CONTEXT/OBJECTIVE: The Spinal Cord Injury--Quality of Life (SCI-QOL) measurement system was developed to address the shortage of relevant and psychometrically sound patient reported outcome (PRO) measures available for clinical care and research in spinal cord injury (SCI) rehabilitation. Using a computer adaptive testing (CAT) approach, the SCI-QOL builds on the Patient Reported Outcomes Measurement Information System (PROMIS) and the Quality of Life in Neurological Disorders (Neuro-QOL) initiative. This initial manuscript introduces the background and development of the SCI-QOL measurement system. Greater detail is presented in the additional manuscripts of this special issue. DESIGN: Classical and contemporary test development methodologies were employed. Qualitative input was obtained from individuals with SCI and clinicians through interviews, focus groups, and cognitive debriefing. Item pools were field tested in a multi-site sample (n=877) and calibrated using item response theory methods. Initial reliability and validity testing was performed in a new sample of individuals with traumatic SCI (n=245). SETTING: Five Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States. PARTICIPANTS: Adults with traumatic SCI. INTERVENTIONS: n/a OUTCOME MEASURES: n/a RESULTS: The SCI-QOL consists of 19 item banks, including the SCI-Functional Index banks, and 3 fixed-length scales measuring physical, emotional, and social aspects of health-related QOL (HRQOL). CONCLUSION: The SCI-QOL measurement system consists of psychometrically sound measures for individuals with SCI. The manuscripts in this special issue provide evidence of the reliability and initial validity of this measurement system. The SCI-QOL also links to other measures designed for a general medical population.

Longitudinal analysis of hospitalization after spinal cord injury: variation based on race and ethnicity.

OBJECTIVE: To examine the longitudinal effects of race/ethnicity on hospitalization among adults with spinal cord injury (SCI) in the 10-year period after initial injury. DESIGN: Retrospective analysis of postinjury hospitalizations among non-Hispanic white, non-Hispanic African American, and Hispanic adults with SCI. SETTING: Community. Data were extracted from the 2011 National Spinal Cord Injury Model Systems database. PARTICIPANTS: Patients with traumatic SCI (N= 5146; white, 3175; African American, 1396; Hispanic, 575) who received rehabilitation at one of the relevant SCI Model Systems. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Hospitalization, including rate of hospitalization, number of hospitalizations, and number of days hospitalized during the 12 months before the first-, fifth-, and tenth-year follow-up interviews for the SCI Model Systems. RESULTS: Significant differences were found in rates of hospitalization at 1 and 5 years postinjury, with participants from Hispanic backgrounds reporting lower rates than either whites or African Americans. At 10 years postinjury, no differences were noted in the rate of hospitalization between racial/ethnic groups; however, compared with whites (P=.011) and Hispanics (P=.051), African Americans with SCI had 13 and 16 more days of hospitalization, respectively. Compared with the first year postinjury, the rate of hospitalization declined over time among whites, African Americans, and Hispanics; however, for African Americans, the number of days hospitalized increased by 12 days (P=.036) at 10 years versus 5 years postinjury. CONCLUSIONS: Racial/ethnic variation appears to exist in postinjury hospitalization for individuals with SCI, with Hispanics showing the lowest rates of hospitalization at 1 and 5 years postinjury and African Americans having a significantly higher number of days hospitalized at 10 years postinjury. Potential explanations for these variations are discussed, and recommendations are made for potential changes to policy and clinical care.

Racial and ethnic disparities in functioning at discharge and follow-up among patients with motor complete spinal cord injury.

OBJECTIVE: To examine racial and ethnic differences in self-care and mobility outcomes for persons with a motor complete, traumatic spinal cord injury (SCI) at discharge and 1-year follow-up. DESIGN: Retrospective cohort study. SETTING: Sixteen rehabilitation centers contributing to the Spinal Cord Injury Model Systems (SCIMS) database. PARTICIPANTS: Adults with traumatic, motor complete SCI (N=1766; American Spinal Injury Association Impairment Scale grade A or B) enrolled in the SCIMS between 2000 and 2011. Selected cases had complete self-reported data on race and ethnicity (non-Hispanic white, non-Hispanic black, or Hispanic) and motor FIM scores assessed at inpatient rehabilitation admission, discharge, and 1-year follow-up. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Functional outcomes were measured by FIM self-care and mobility scores on a 1 to 7 FIM scale, at discharge and 1-year follow-up. RESULTS: Multiple regression models stratified by neurologic category and adjusted for sociodemographic and injury characteristics assessed racial and ethnic group differences in FIM self-care and mobility change scores at discharge and 1-year follow-up. At discharge, non-Hispanic black participants with tetraplegia and paraplegia had significantly poorer gains in FIM self-care and mobility scores relative to non-Hispanic white and Hispanic participants. At 1-year follow-up, similar FIM self-care and mobility change scores were found across racial and ethnic groups within each neurologic category. CONCLUSIONS: Non-Hispanic white and Hispanic participants had comparatively more improvement in self-care and mobility during inpatient rehabilitation compared with non-Hispanic black participants. At 1-year follow-up, no differences in self-care and mobility outcomes were observed across racial and ethnic groups. Additional research is needed to identify potential modifiable factors that may contribute to racially and ethnically different patterns of functional outcomes observed during inpatient rehabilitation.

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.

Multiphase Veteran Engagement to Develop a Spinal Cord Injury Employment Survey.

BACKGROUND: Spinal cord injury is a condition that adversely impacts employment and economic stability. The Kessler Foundation National Employment and Disability Survey (KFNEDS) was developed to understand the experience of striving to work among persons with disabilities. However, this survey was not intended to capture the employment experiences of veterans living with spinal cord injury. The aim of this study was to engage veterans living with a spinal cord injury to adapt the KFNEDS for veterans living with this specific disability. OBJECTIVES: Describe the process and outcomes of actively engaging veterans living with spinal cord injury in the revision of the KFNEDS. METHODS: In this multiphase qualitative study, we used an iterative veteran-centered approach to engage veterans living with an SCI in all project phases. We consulted with a Veterans' hospital's Veteran Engagement Group and convened a study-specific Community Action Board to engage in a collaborative partnership with the research team. We recruited 17 veterans living with a spinal cord injury, employed or looking for employment since their spinal cord injury, to participate in focus groups and cognitive interviews that informed the adaptation of the KFNEDS-VS. RESULTS: A provisional version of the KFNEDS-VS included 37 survey questions in the following sections: Disability Screen, Employment Screen, Disability, Employment Overall, Looking for Work, At Work, and Workplace Accommodations and Supports. Revisions included wording changes for clarity, veteran and spinal cord injury-specific content that was missing from the questions or response options, and removal of irrelevant questions. CONCLUSIONS: Engaging veterans in multiple phases of the study lead to the development of a relevant survey that captures the lived experience of veterans seeking, obtaining, and maintaining employment following spinal cord injury.

Spinal cord injury-functional index: item banks to measure physical functioning in individuals with spinal cord injury.

OBJECTIVES: To develop a comprehensive set of patient-reported items to assess multiple aspects of physical functioning relevant to the lives of people with spinal cord injury (SCI), and to evaluate the underlying structure of physical functioning. DESIGN: Cross-sectional. SETTING: Inpatient and community. PARTICIPANTS: Item pools of physical functioning were developed, refined, and field tested in a large sample of individuals (N=855) with traumatic SCI stratified by diagnosis, severity, and time since injury. INTERVENTIONS: None. MAIN OUTCOME MEASURE: Spinal Cord Injury-Functional Index (SCI-FI) measurement system. RESULTS: Confirmatory factor analysis (CFA) indicated that a 5-factor model, including basic mobility, ambulation, wheelchair mobility, self-care, and fine motor function, had the best model fit and was most closely aligned conceptually with feedback received from individuals with SCI and SCI clinicians. When just the items making up basic mobility were tested in CFA, the fit statistics indicated strong support for a unidimensional model. Similar results were demonstrated for each of the other 4 factors, indicating unidimensional models. CONCLUSIONS: Though unidimensional or 2-factor (mobility and upper extremity) models of physical functioning make up outcomes measures in the general population, the underlying structure of physical function in SCI is more complex. A 5-factor solution allows for comprehensive assessment of key domain areas of physical functioning. These results informed the structure and development of the SCI-FI measurement system of physical functioning.