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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.

Objective Explore trajectories of functional recovery that occur during the first two years after spinal cord injury (SCI). Design Observational cohort study. Setting Eight SCI Model System sites. Participants 479 adults with SCI completed four 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 following baseline assessment. 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 six 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 six months. Finally, for individuals with tetraplegia, trajectories of Fine Motor Function/C scores followed two 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 with regard to rates of recovery. Conclusions Trajectories of functional recovery followed a small number of change patterns, though variation around these patterns emerged. During the first two 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 two years and beyond.

Objective To establish responsiveness of 3 Spinal Cord Injury – Functional Index/Capacity (SCI-FI/C) item banks in the first year following SCI. Design Longitudinal patient-reported outcomes assessment replicated through secondary analysis of an independent data set. Setting 8 SCI Model Systems rehabilitation hospitals in the US. Participants Study 1 participants included 184 adults with recent (≤4 months) traumatic SCI and 221 community-dwelling adults (>1 year post injury). Study 2 participants were 418 individuals with recent SCI (≤4 months). 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), as 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 recent SCI sample 1 year after baseline measurement. Study 2 also compared the SCI-FI/C measures’ responsiveness to that of the Self Report 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 Report 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 Conclusion 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.

Unemployment is common for persons with disabilities but little is known about the different reasons why people with disabilities may not be seeking employment. This study identified the reasons that people living with disabilities in the United States report for not seeking employment, from the 2015 Kessler Foundation National Employment and Disability Survey (KFNEDS), and categorization of reasons by demographic, socioeconomic, and disability characteristics. We conducted a content analysis of responses to an open-ended question on the KFNEDS. The analytic sample ( n = 1,254) consisted of adults (ages 18–64) living with disabilities who self-identified as either unemployed or not seeking employment. Team coding used a hybrid inductive/deductive approach to identify nine meaningful reasons why people with disabilities may not seek employment. Overall, medical conditions, functional limitations, or their disability were more likely to be reported as reasons for not seeking work, rather than situational reasons associated with workplace engagement, such as “lack of job opportunities.” Bivariate comparisons of codes across demographic, socioeconomic, and disability characteristics noted variability in reasons reported by respondents by sex, race/ethnicity, age, household income, and disability. These findings provide an understanding of diverse reasons for not seeking employment, which can inform programs and policies that promote labor force participation of people with disabilities.

People with disabilities encounter significant barriers in health care and report that healthcare providers often lack an understanding in caring for them. Currently, there is limited disability awareness training in medical school curricula. This mixed-methods pilot study examined the effects of integrating a short wheelchair immersion program in a physical medicine and rehabilitation clerkship, versus the clerkship alone, on attitudes toward people with disabilities, comfort in treating people with disabilities, knowledge of wheelchair etiquette, and understanding of wheelchair-associated challenges. The standard training group underwent the physical medicine and rehabilitation clerkship, consisting of a 2-wk clinical rotation and didactic program. The intervention group additionally underwent a newly developed 1-hr wheelchair program where they simulated mobility and some activities of daily living as a "wheelchair user" and "caregiver." Quantitative analysis demonstrated that all students who completed the clerkship had significantly improved attitudes toward and comfort in treating people with disabilities, knowledge of wheelchair etiquette, and understanding of wheelchair-associated challenges, whereas students in the wheelchair immersion program had a greater change in understanding wheelchair-associated challenges. Qualitative analysis revealed that the intervention resulted in positive attitudinal changes. These findings suggest that integrating a brief wheelchair immersion program with a physical medicine and rehabilitation clerkship may enhance disability awareness training in medical school curricula.

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.

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.

Research Objectives To assess therapists’ level of comfort, confidence, and education needs when engaging in patient-centered care in an inpatient cancer rehabilitation program. Design A prospective quality improvement study using a concurrent mixed-method design. Setting An inpatient rehabilitation hospital. Participants Sixty-seven therapists completed surveys and a subsample of 11 therapists participated in two focus groups to provide feedback about their readiness to engage in patient-centered communication in an inpatient cancer rehabilitation program. Interventions Not applicable. Main Outcome Measures Descriptive statistics summarized the therapists’ demographic characteristics, level of comfort, confidence, and education needs. Focus group data was coded using a thematic coding scheme. Coded text was compiled into a rapid analysis matrix. Results Preliminary survey results indicate only 31.1% of therapists reported comfort discussing end-of-life concerns with their cancer patients, and 81.0% of therapists recommended more education on navigating challenging conversations. Common communication themes were noted across cancer patients' length of stay including prognosis discussion, end-of-life, and discharge planning. Therapists also specified communication barriers and facilitators they experienced while engaging in patient-centered conversations with cancer patients and their families during inpatient rehabilitation. Conclusions Similar findings from the survey and focus groups contextualized different barriers and facilitators of patient-centered communication in an inpatient cancer rehabilitation program. When prognosis is clear and understood, the therapy team can successfully plan for the patient's current and future functional status as well as equipment and family training needs. Ongoing education and use of a communication aid, such as a Question Prompt List, can support improved communication in inpatient cancer rehabilitation. Author(s) Disclosures The authors are salaried employees of Kessler Institute for Rehabilitation and Kessler Foundation.

Background An estimated 42,000 people currently living with chronic spinal cord injury (SCI) are veterans. SCI was a common combat-related injury in the World Wars and Vietnam era and now affects more than 11% of military personnel injured in Operation Iraqi Freedom and Operation Enduring Freedom. The Veterans Benefits Administration primarily offers financial compensation for disabilities sustained or re-aggravated during military service, called service-connected disability compensation. With the overwhelming cost of living with an SCI, this monthly financial compensation can provide service-connected veterans and their families with access to additional supportive resources (eg, assistive devices and personal aide) and maintain their quality of life (QOL). Little is known about personal, health, functional, and QOL outcomes associated with service-connected and nonservice-connected status for veterans living with an SCI. Objective The aim of this study is to compare the ways in which Veterans Affairs’ (VA) service-connected and nonservice-connected status may be associated with health and functional outcomes, choice of health care provider, and overall QOL for veterans living with an SCI and their caregivers. Methods This cross-sectional qualitative study will gather data using retrospective chart reviews, semistructured interviews, and focus groups. After obtaining institutional review board (IRB) approval, purposeful sampling techniques will be used to recruit and enroll the following key stakeholders: veterans living with an SCI, family caregivers, and SCI health care providers. Concurrent data collection will take place at 2 sites: Veterans Administration New Jersey Healthcare System and Northern New Jersey Spinal Cord Injury System. Results This study was funded in July 2015. IRB approval was obtained by November 2016 at both sites. Enrollment and data collection for phase 1 to phase 4 are complete. A total of 69 veterans, 18 caregivers, and 19 SCI clinicians enrolled in the study. Data analyses for these phases are underway. In phase 5, the follow-up focus group activities are scheduled. The final results are expected by the end of 2019. Conclusions The factors that contribute to veterans living with SCI seeking and not seeking VA disability compensation benefits are not well understood in rehabilitation research. Triangulation of these data sources will allow us to compare, contrast, and integrate the results, which can be used to develop clinical guidelines, caregiver training, and patient education programs. International Registered Report Identifier (IRRID) DERR1-10.2196/14039

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.

Background Spinal cord injury (SCI) is a debilitating injury that results in chronic paralysis, impaired functioning, and drastically altered quality of life (QOL). The Department of Veterans Affairs (VA) estimates that approximately 450 newly injured veterans and active-duty members receive rehabilitation at VA’s Spinal Cord Injury/Disorders Centers annually. VA virtual health services use technology and health informatics to provide veterans with better access and more effective care management. The “Triangle of Healthy Caregiving for SCI Veterans” is a patient-centered intervention that incorporates SCI veterans’ caregivers into the VA SCI health care team and extends into the homes of veterans with SCI by using real-time clinical video teleconferencing (CVT). CVT facilitates video-clinic visits, which can include different types of clinical evaluations, therapy (physical/occupational), or psychosocial services. The “Triangle of Healthy Caregiving for SCI Veterans” builds on interactive, interdisciplinary health care relationships that exist between the veterans with SCI, their caregivers, and the VA SCI health care team. SCI veterans’ propensity to multiple secondary complications makes a healthy partnership crucial for the success of keeping better health and functional outcomes as well as quality of life while living in their homes. Objective The goal of the proposed mixed methods project will assess SCI veterans’, their caregivers’, and the VA health care team’s perspectives and experiences in the “Triangle of Healthy Caregiving for SCI Veterans” to determine the benefits, challenges, and outcomes for everyone involved in the intervention. Methods Data collection methods will be implemented over three sequential phases. First, in-depth interviews will be conducted with the telehealth coordinators to systematically document the administrative procedures involved in enrollment of veterans with SCI into the CVT system. Next, structured observation of the CVT enrollment process and logistics of home installation of the CVT system will be conducted to validate the content of the in-depth interviews and highlight any discrepancies observed. Semistructured interviews will be conducted to assess specific elements of the “Triangle of Healthy Caregiving for SCI Veterans” program, their perceived utility, and effectiveness of the CVT system as well as the general impressions of the impact of the intervention on the SCI veterans’ health and function outcomes, caregiver burden, and daily caregiver burden. Finally, the research team will conduct a focus group to evaluate the ways in which the “Triangle of Healthy Caregiving for SCI Veterans” is useful for health care delivery to veterans with SCI and support services to SCI caregivers. Results This proposal was funded in July 2017. It was reviewed and received institutional review board approval in March 2018, and the project was started immediately after, in the same month. As of September 2019, we have completed Phases I and III and have recruited 52 subjects for Phase II. We are beginning the data analysis. The study is projected to be completed in late summer of 2020, and the expected results are to be published in the fall of 2020. Conclusions The findings from this study will highlight the ways in which virtual health care technologies can be used to improve access to SCI specialized care for veterans and provide an estimation of the potential impact on clinical outcomes for veterans with SCI and their caregivers. International Registered Report Identifier (IRRID) DERR1-10.2196/14051

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.

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–Asberg 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. Copyright © 2014 John Wiley & Sons, Ltd.

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.

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.

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–Asberg 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. Copyright © 2014 John Wiley & Sons, Ltd.

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.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.Focus groups were conducted at 2 Veterans Affairs medical centers and a research center.Individuals with SCI (n=27) in 3 focus groups and clinical providers (n=25) in 3 focus groups.Not applicable.Not applicable.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%).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.

Spatial neglect prolongs stroke survivors' recovery to independence. However, little is known about the impact of spatial neglect on caregivers of stroke survivors.To explore the factors associated with burden and stress among informal caregivers of stroke survivors with spatial neglect.Following the previous study of 108 stroke survivors, we reached 24 stroke survivors' caregivers, and 20 caregivers (age: M±SD=56.9±12.7 years; 12 females) completed the study. 10 survivors had symptoms of spatial neglect, and 10 did not (i.e., SN+ or SN-, respectively) at the time when discharged from inpatient rehabilitation, which was 9.3±6.2 months before the present study. Via a semi-structured telephone interview, we assessed caregivers' burden and stress qualitatively and quantitatively.No difference was observed across caregiver groups in cognitive function, depressive mood, or community mobility. In comparison, caregivers of the SN+ group allocated more time to care, controlling for survivors' disability (adjusted effective size d = 1.80). Their self-perceived burden and stress were more severe than the other group (adjusted d = .99). Qualitative analysis indicated caregivers of the SN+ group were more likely to describe economic stressors and undesirable changes in career and vacation planning. While 80% of participants preferred their care recipients to receive additional motor or mobility therapy, caregivers of the SN+ group were more likely to suggest additional therapy for cognitive impairment.This exploratory study suggests that spatial neglect may heighten caregivers' burden and stress levels. Future studies with a large sample size are required.

To provide validation of functional ability levels for the Spinal Cord Injury - Functional Index (SCI-FI).Cross-sectional.Inpatient rehabilitation hospital and community settings.A sample of 855 individuals with traumatic spinal cord injury enrolled in 6 rehabilitation centers participating in the National Spinal Cord Injury Model Systems Network.Not Applicable.Spinal Cord Injury-Functional Index (SCI-FI).Cluster analyses identified three distinct groups that represent low, mid-range and high SCI-FI functional ability levels. Comparison of clusters on personal and other injury characteristics suggested some significant differences between groups.These results strongly support the use of SCI-FI functional ability levels to document the perceived functional abilities of persons with SCI. Results of the cluster analysis suggest that the SCI-FI functional ability levels capture function by injury characteristics. Clinical implications regarding tracking functional activity trajectories during follow-up visits are discussed.

Jette AM, Tulsky DS, Ni P, Kisala PA, Slavin MD, Dijkers MP, Heinemann AW, Tate DG, Whiteneck G, Charlifue S, Houlihan B, Williams S, Kirshblum S, Dyson-Hudson T, Zanca J, Fyffe D. Development and initial evaluation of the Spinal Cord Injury-Functional Index. Objectives To describe the calibration of the Spinal Cord Injury-Functional Index (SCI-FI) and report on the initial psychometric evaluation of the SCI-FI scales in each content domain. Design Cross-sectional survey followed by calibration data simulations. Setting Inpatient and community settings. Participants A sample of participants (N=855) with traumatic spinal cord injury (SCI) recruited from 6 SCI Model Systems and stratified by diagnosis, severity, and time since injury. Interventions None. Main Outcome Measure SCI-FI instrument. Results Item response theory analyses confirmed the unidimensionality of 5 SCI-FI scales: basic mobility (54 items), fine motor function (36 items), self-care (90 items), ambulation (39 items), and wheelchair mobility (56 items). All SCI-FI scales revealed strong psychometric properties. High correlations of scores on simulated computer adaptive testing (CAT) with the overall SCI-FI domain scores indicated excellent potential for CAT to accurately characterize functional profiles of adults with SCI. Overall, there was very little loss of measurement reliability or precision using CAT compared with the full item bank; however, there was some loss of reliability and precision at the lower and upper ranges of each scale, corresponding to regions where there were few questions in the item banks. Conclusions Initial evaluation revealed that the SCI-FI achieved considerable breadth of coverage in each content domain and demonstrated acceptable psychometric properties. The use of CAT to administer the SCI-FI will minimize assessment burden, while allowing for the comprehensive assessment of the functional abilities of adults with SCI.

There is considerable variation in rehabilitation outcomes within the population of spinal cord-injured individuals across racial and socioeconomic groups. This suggests that the long-term health following spinal cord injury (SCI) is determined, at least in part, by group differences in exposure to advantages and disadvantages among persons living in the community. This article conceptualizes the nature of vulnerability and how increased vulnerability leads to disparities in SCI outcomes. Demographic, socioeconomic, and geographic determinants of adverse outcomes among vulnerable groups are discussed. Finally, a research model that outlines potential processes that elicit vulnerability following SCI and clinical implications is reviewed.

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.

Most older adults diagnosed with a mental disorder receive treatment in primary care settings that lack personnel skilled in geropsychological diagnosis and treatment. The Ferkauf Older Adult Program of Yeshiva University endeavors to bridge this gap by providing training in geriatric psychology, through coursework and diverse clinical practica, to clinical psychology doctoral students within a large urban professional psychology program. In an innovative effort to provide the most disadvantaged elderly with comprehensive mental health treatment and maximize trainee exposure to an interdisciplinary treatment model, the program also pairs selected doctoral psychology trainees with medical residents to optimize integrated mental health service delivery for primary care elderly. The program has the following core objectives: (1) Infuse the mental health and aging knowledge base into the regular graduate curriculum; (2) Provide interdisciplinary training in geropsychological diagnostic and consultative services within an urban primary care setting; (3) Provide interdisciplinary training in the practice of psychological and neuropsychological evaluation of elderly; (4) Provide training in geropsychological psychotherapeutic intervention, including individual, couples/family, and brief/psycho-educational therapies with outpatient older adults. These objectives are achieved by pooling the resources of a graduate school of psychology, a local public hospital, and an academic medical center to achieve educational and clinical service goals.

Objective The authors compared the prevalence of major depressive disorder (MDD) and the prescription rates of antidepressant medication, by race, among frail, older homecare patients. Methods A random sample of 56 black and 458 white newly admitted homecare patients age 65 and over was assessed for MDD with structured interviews and medical records, and antidepressant prescription rates were tallied. Results The prevalence of MDD did not differ significantly across racial groups. Only 16.7% of black patients and 32.0% of white patients were prescribed antidepressant medication. Conclusions Prevalence of MDD was similar among black and white elderly homecare patients. In both groups, depression is undertreated and contributes to the burden of this frail, older patient group.

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.Retrospective cohort study.Sixteen rehabilitation centers contributing to the Spinal Cord Injury Model Systems (SCIMS) database.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.Not applicable.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.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.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.

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.

Extremely obese women are less likely than nonobese women to receive breast and cervical cancer screening examinations. Reasons for this disparity are unclear and may stem from patient and/or physician barriers. This sequential mixed-methods study used individual in-depth interviews of 15 family physicians followed by a mail survey of 255 family physicians (53% response rate) to understand the barriers they faced in performing cancer screening examinations in extremely obese women. Barriers fell into three main areas: (i) difficulty doing pelvic and breast exams; (ii) inadequate equipment; and (iii) challenges overcoming patient barriers and refusal. This led some physicians to avoid performing breast and pelvic examinations on extremely obese women. Having more knowledge about specific examination techniques was associated with less difficulty in palpating lumps on breast and pelvic examinations (P < 0.005). Physicians perceived that embarrassment, aversion to undressing, and avoidance of discussions related to their weight were the most frequent barriers extremely obese women had with getting physical examinations. Educating and/or motivating patients and addressing fears were strategies used most frequently when patients refused mammograms or Pap smears. Interventions focusing on physician barriers, such as educating them on specific examination techniques, obtaining adequate equipment and supplies, and providing resources to assist physicians in dealing with patient barriers and refusal, may be fruitful in increasing cancer screening rates in extremely obese patients. Future research studies testing the effectiveness of these strategies are needed to improve cancer outcomes in this high-risk population.

Objectives: This qualitative study examined underserved black males' perspectives about prostate and colorectal cancer screening. Methods: Black male residents of Newark, NJ, ≥ 18 years of age, were recruited to participate in focus groups. Two groups were conducted with a total of 24 participants. Transcripts were analyzed using an immersion/crystallization approach. Results: Three major themes were identified, while men reflected on their experiences with prostate and colorectal cancer screening: 1) motivation for seeking screening; 2) fear associated with screenings; and 3) healthcare system barriers (e.g., patient-doctor relationships, insurance and mistrust of healthcare professionals). Participants also gave recommendations on how to increase preventive screening. Discussion: Fear and past experiences with healthcare serve as motivators and demotivators of preventive screening behavior. Interventions that address motivation and fear are recommended to increase preventive screening among this population.

The purpose of this pilot study was to explore the approaches to depression care preferred by older home-care patients and examine characteristics associated with those preferences. Twenty-eight long-term home-care patients, ages 62 to 95, were interviewed. Patients ranked their depression care preferences and provided rationale for their responses. Results indicated prayer was preferred by the highest percentage of patients (50%). Comparing patients with and without depression experience, prayer was preferred by the latter group. The results highlight the importance of addressing patient preferences during care planning to improve participation in geriatric depression care management.