Spinal Cord Injury Quality Of Life Research Articles

Exoskeletal-Assisted Walking in Veterans With Paralysis: A Randomized Clinical Trial.

Robotic exoskeletons leverage technology that assists people with spinal cord injury (SCI) to walk. The efficacy of home and community exoskeletal use has not been studied in a randomized clinical trial (RCT). To examine whether use of a wheelchair plus an exoskeleton compared with use of only a wheelchair led to clinically meaningful net improvements in patient-reported outcomes for mental and physical health. This RCT of veterans with SCI was conducted at 15 Veterans Affairs medical centers in the US from September 6, 2016, to September 27, 2021. Data analysis was performed from March 10, 2022, to June 20, 2024. Participants were randomized (1:1) to standard of care (SOC) wheelchair use or SOC plus at-will use of a US Food and Drug Administration (FDA)-cleared exoskeletal-assisted walking (EAW) device for 4 months in the home and community. Two primary outcomes were studied: 4.0-point or greater improvement in the mental component summary score on the Veterans RAND 36-Item Health Survey (MCS/VR-36) and 10% improvement in the total T score of the Spinal Cord Injury-Quality of Life (SCI-QOL) physical and medical health domain and reported as the proportion who achieved clinically meaningful changes. The primary outcomes were measured at baseline, post randomization after advanced EAW training sessions, and at 2 months and 4 months (primary end point) in the intervention period. Device usage, reasons for not using, and adverse events were collected. A total of 161 veterans with SCI were randomized to the EAW (n = 78) or SOC (n = 83) group; 151 (94%) were male, the median age was 47 (IQR, 35-56) years, and median time since SCI was 7.3 (IQR, 0.5 to 46.5) years. The difference in proportion of successes between the EAW and SOC groups on the MCS/VR-36 (12 of 78 [15.4%] vs 14 of 83 [16.9%]; relative risk, 0.91; 95% CI, 0.45-1.85) and SCI-QOL physical and medical health domain (10 of 78 [12.8%] vs 11 of 83 [13.3%]; relative risk, 0.97; 95% CI, 0.44-2.15) was not statistically different. Device use was lower than expected (mean [SD] distance, 1.53 [0.02] miles per month), primarily due to the FDA-mandated companion being unavailable 43.9% of the time (177 of 403 instances). Two EAW-related foot fractures and 9 unrelated fractures (mostly during wheelchair transfers) were reported. In this RCT of veterans with SCI, the lack of improved outcomes with EAW device use may have been related to the relatively low device usage. Solutions for companion requirements and user-friendly technological adaptations should be considered for improved personal use of these devices. ClinicalTrials.gov Identifier: NCT02658656.

Reciprocal association between pain and quality of life after newly acquired spinal cord injury.

Pain is highly prevalent in spinal cord injury (SCI) and a key determinant of quality of life (QoL). This is the first study to examine reciprocal associations between pain and QoL in patients undergoing their first inpatient rehabilitation after SCI. Longitudinal data, with three measurement time points (1month and 3months after SCI onset, and at discharge from inpatient rehabilitation) from the Inception Cohort of the Swiss Spinal Cord Injury Cohort Study. Participants were 381 individuals aged ≥ 16years with a newly diagnosed traumatic or non-traumatic SCI. 75.1% were male and the average age was 53.2years. Random intercept cross-lagged panel models were conducted to examine the reciprocal association between pain intensity and QoL, as measured with the International SCI QoL Basic Data Set three individual items (satisfaction with life, physical health, and psychological health) and total score (mean of the three individual items). Both item and total QoL scores increased over time. 1month: 5.3 (SD = 2.7), 3months: 5.9 (SD = 2.3), discharge: 6.6 (SD = 2.0). Participants reported relatively low levels of pain intensity that remained stable over the course of inpatient rehabilitation. 1month: 2.7 (SD = 2.3), 3months: 2.6 (SD = 2.4), discharge: 2.7 (SD = 2.5). There were no significant cross-lagged associations between QoL and pain intensity across time. Results indicate that pain intensity does not predict changes in QoL during first rehabilitation, and vice versa. Associations between pain intensity and QoL reported by previous studies may be attributable to individual characteristics and timely events that simultaneously influence pain and QoL.

Psychometric Properties of the Spinal Cord Injury-Quality of Life (SCI-QOL) Resilience Short Form in a Sample With Spinal Cord Injury

ObjectiveTo explore the psychometric properties (eg, data distribution characteristics, convergent or discriminant validity, internal consistency reliability) of the Spinal Cord Injury-Quality of Life measurement system (SCI-QOL) Resilience 8-item short form (SF) in comparison to the criterion standard resilience measure, Connor Davidson Resilience Scale (CD-RISC) in a sample of individuals with spinal cord injury (SCI). DesignDescriptive statistics were calculated to examine variable data distribution characteristics. Correlation analyses were conducted for convergent and discriminant validity. Reliability statistics were calculated for resilience and other validity measures. SettingGeneral community. ParticipantsIndividuals with SCI (N=202; 51.5% male, 48% female). InterventionsNot applicable. Main Outcome MeasuresPatient-Reported Outcomes Measurement Information System measures (depression, anxiety, ability to participate in social roles and activities, pain intensity, fatigue, sleep disturbance), SCI-QOL short forms (SF) (resilience, positive affect and well-being, mobility), CD-RISC, National Institutes of Health Toolbox for Assessment of Neurological and Behavioral Function - perceived stress (NIH Toolbox-perceived stress), and the Satisfaction with Life Scale were administered. ResultsThe mean and SD for the SCI-QOL Resilience SF (mean=48.60; SD=8.20) approximated the normative mean (mean=50, SD=10). The SCI-QOL Resilience SF scores were essentially normally distributed though somewhat kurtotic, with skew=-0.17 and excess kurtosis=1.4; internal consistency reliability was good (Cronbach's alpha=0.89). Convergent validity was supported by significant moderate correlations in expected directions between the SCI-QOL Resilience SF and measures of CD-RISC resilience, depressive symptoms, anxiety, social participation, positive affect and well-being, stress, and satisfaction with life. Discriminant validity was supported by small non-significant correlations between the SCI-QOL Resilience SF and age, sex, injury level, time since injury, pain intensity, mobility, sleep disturbance, and fatigue. ConclusionThe SCI-QOL Resilience SF demonstrated good convergent and discriminant validity. Our study showed that the SCI-QOL Resilience SF is a psychometrically valid tool that can reliably estimate levels of resilience in the SCI population.

Resilience as an Independent Predictor of Bowel Related Quality of Life After Spinal Cord Injury.

Bowel dysfunction remains a prominent priority in the rehabilitation of patients with spinal cord injuries (SCIs). However, our understanding of the factors that influence bowel-related quality of life (QoL) in this population remains limited. This study aimed to investigate the potential role of resilience, defined as an individual's capacity to cope with and adapt to adversity, as a predictor of bowel-related QoL among the patients with SCI. A cohort of adult patients with SCI who received bowel and bladder care at an outpatient clinic within a large rehabilitation hospital was identified through a prospectively collected database. Resilience was measured using the Spinal Cord Injury-Quality of Life (SCI-QOL) Resilience Short Form, whereas bowel QoL was assessed using the Irritable Bowel Syndrome-Quality of Life (IBS-QoL) questionnaire. Univariate and multivariate regression analyses were employed to identify predictors of bowel-related QoL. The examined variables included age, gender, level and completeness of injury, time since injury, hand function, resilience, and the severity of bowel dysfunction as measured using the Neurogenic Bowel Dysfunction Score (NBDS). A total of 73 patients participated in this study, with a mean age of 44.01 ± 13.43 years and comprising mostly men (n = 57, 78%). The results revealed a significant correlation between resilience scores and the total score of IBS-QoL (ρ = -0.47, p < 0.0001). The multivariate analysis demonstrated that both resilience and the severity of bowel dysfunction were significant independent predictors of bowel-related QoL, with resilience demonstrating a stronger association. Overall, this study elucidates the importance of resilience in shaping patients' perceptions of their bowel health within the SCI population. In addition to the more expected determinants of bowel-related QoL, such as the severity of bowel dysfunction, resilience emerged as a notable factor. Accordingly, integrating interventions that enhance resilience within bowel rehabilitation programs may yield improvements in patients' perceived bowel health beyond the benefits achievable through bowel function enhancement alone.

MP52-04 PATIENT'S EXPERIENCE AND SATISFACTION WITH INTRAVESICAL GENTAMICIN IRRIGATIONS

You have accessJournal of UrologyCME1 Apr 2023MP52-04 PATIENT'S EXPERIENCE AND SATISFACTION WITH INTRAVESICAL GENTAMICIN IRRIGATIONS Patricia Maymi-Castrodad, Connie Pines, Martin Forchhmeimer, Denise Tate, and Anne Cameron Patricia Maymi-CastrodadPatricia Maymi-Castrodad More articles by this author , Connie PinesConnie Pines More articles by this author , Martin ForchhmeimerMartin Forchhmeimer More articles by this author , Denise TateDenise Tate More articles by this author , and Anne CameronAnne Cameron More articles by this author View All Author Informationhttps://doi.org/10.1097/JU.0000000000003300.04AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Gentamicin bladder instillations have been shown to decrease urinary tract infections (UTI) in patients with neurogenic lower urinary tract dysfunction (NLUTD) on intermittent self-catheterization (ISC). Even with proven clinical efficacy of gentamicin irrigation, patient’s experience has not been studied. We aim to assess patient’s experience and satisfaction with intravesical gentamicin irrigations in patient with NGLUTD with refractory recurrent urinary tract infections. METHODS: An interview study of patients who tried gentamicin bladder instillations either presently or in the past. Eligibility was patients with NGLUTD performing CIC and recurrent UTIs (3 culture proven UTI in a year requiring antibiotics). We conducted interviews focusing on patient’s UTI history, bladder health, use of gentamycin, and validated questionnaire Neurogenic Bladder Symptom Scale (NBSS), Spinal Cord Injury Quality of Life (SCI-QOL) Bladder complications, management difficulties, and Patient- Reported Outcome Measurement (PROMIS) Global Health Scale. RESULTS: 36 patients met the inclusion criteria; 56.4% were male and 92.3% White, median age of 61 years (range 33-77). Etiology of NGLUTD were Spinal Cord Injury (71.8%), Spina Bifida (5.1%), Multiple Sclerosis (10.3%), and Transverse Myelitis (2.6%). Only 5.6% had undergone bladder surgery. 77.8% reported still doing gentamicin flushes, with 78.6% very satisfied with the experience. The median number of documented UTI prior to starting irrigations was 3 (range 2-6.5) and the number of documented UTI during the 12 months after was 0 (range 0-1). Reasons for stopping irrigations included difficulty conducting the flushes (12.5%), insurance or other financial reasons (25.0%) or recurrent UTIs (62.5%). The NBSS showed 63.9% of participants when experiencing UTIs can be treated at home with antibiotics and 22.2% required hospital admission. The SCI-QOL showed 83.3% of patient are not limited in their daily activities as a result of their UTIs. The PROMIS showed 44.4 % would rate their QOL as good, 25.0% as very good, and 11.1% as Excellent. CONCLUSIONS: Gentamycin instillations reduce the incidence of UTI in NGLUTD patients performing CIC. Participants reported satisfaction and good QoL when not having UTIs with the use of intravesical gentamicin instillations. Education on technique for the installations and insurance or financial coverage in this population may improve patient’s compliance to maintain reduce risk of UTI. Source of Funding: National Institute of Independent Living and Disability Research © 2023 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 209Issue Supplement 4April 2023Page: e703 Advertisement Copyright & Permissions© 2023 by American Urological Association Education and Research, Inc.MetricsAuthor Information Patricia Maymi-Castrodad More articles by this author Connie Pines More articles by this author Martin Forchhmeimer More articles by this author Denise Tate More articles by this author Anne Cameron More articles by this author Expand All Advertisement PDF downloadLoading ...

Association between Acceptance and Commitment Therapy (ACT) processes and depressive symptoms and pain interference in persons with spinal cord injury (SCI).

To explore the extent to which Acceptance and Commitment Therapy (ACT) core processes are related to depressive symptoms and pain interference in a sample of individuals with spinal cord injury (SCI). 159 individuals with an SCI completed self-report surveys of 6 core processes of ACT and of 2 quality-of-life indicators (Spinal Cord Injury-Quality of Life [SCI-QOL] Depressive Symptoms and Pain Interference). Hierarchical linear regressions were used to analyze the amount of variance in depressive symptom and pain interference accounted for by ACT as a comprehensive construct and each individual ACT component. Data were collected specifically to examine these research questions. Analyses revealed that ACT as a unified construct accounted for a significant amount of variance in both criterion variables (range ΔR² = .29-.56; all ps < .001). Pursuit of Values and Emotional Acceptance were significant independent predictors of depressive symptoms; Self-as-Context and Emotional Acceptance were significant independent predictors of pain interference. Overall, these results demonstrate that ACT core processes account for moderate to large amounts of the variance in indicators of depressive symptoms and pain interference for individuals who have an SCI. Pursuit of values and acceptance had the greatest associations with depressive symptoms, whereas self as context and acceptance had the greatest associations with reported pain interference. These results highlight the potential for ACT core processes to be targeted in a treatment context. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Factors enabling comorbidities and secondary conditions in older adults with spinal cord injury

Objective: To examine the role of personal, social, and environmental factors predicting comorbidities and secondary conditions among older adults with spinal cord injury (SCI). Design: Cross-sectional study utilizing survey methods were used to collect the data analyzed with two distinct general linear models. Setting: Community-dwelling participants who resided in rural and urban areas. Participants: One hundred and eighty-three (183) participants with SCI ages 45 and over at least five years post injury. Interventions: Not applicable. Measures: Spinal Cord Injury Secondary Conditions Scale (SCI-SCS); Comorbidities Questionnaire; Spinal Cord Injury Functional Index Assistive Technology (SCI-FI/AT) Basic – Mobility; Spinal Cord Injury Quality of Life (SCI-QOL) Satisfaction with Social Roles and Activities Scale (SSRA); Cohen’s Social Network-Social Integration Index, the Medical Outcomes Study (MOS) Social Support Emotional/Informational Support Scale, and the Facilitators and Barriers Survey for Mobility (FABS-Mv2). Questions were also asked from the Behavioral Risk Factor Surveillance System (BRFSS). Results: Common predictors of comorbidities and secondary conditions included age, basic mobility, primary health care payer and parking limitations. An interaction between parking and neurological classification was observed for comorbidities. Neurological classification and employment were significantly associated with comorbidities while for secondary conditions, sex, years since injury, education, satisfaction with social roles and the home environment were critical factors. Conclusions: Our study shows the effects of demographic and injury factors, physical functioning, satisfaction with social roles, access to home environment adaptations and health resources in predicting comorbidities and secondary conditions among older adults with SCI.

Dutch-Flemish translation and cross-cultural adaption of the Spinal Cord Injury-Quality of Life (SCI-QOL) short forms

PurposeA spinal cord injury (SCI) has a large impact on a person’s physical, psychological, and social health. Previous studies focused on physical recovery in patients with SCI and assessed their health-related quality of life (HRQOL) with general questionnaires, which often contain irrelevant questions. The SCI-QOL questionnaire was developed to specifically assess the HRQOL of the SCI population. A comprehensive translation and cross-cultural adaptation are required to use this questionnaire in the Netherlands and Flanders, Belgium.MethodsAll 23 short forms of the SCI-QOL for adults were translated from English into Dutch-Flemish using the Functional Assessment of Chronic Illness Therapy translation methodology, with a cognitive debriefing being performed with 10 patients with SCI and 10 persons from the general population.ResultsThe Dutch-Flemish PROMIS group previously translated 46 of the 207 items in the 23 short forms. Here, we achieved an acceptable translation of the other 161 items. A single Dutch-Flemish translation was obtained for 20 short forms, while separate Dutch and Flemish translations were necessary for the short forms Ambulation, Manual Wheelchair, and Stigma.ConclusionThe Dutch-Flemish translation of the SCI-QOL is now available for clinical and research purposes. Future studies should focus on the psychometric properties of this cross-culturally adapted version.

Greener on the other side? an analysis of the association between residential greenspace and psychological well-being among people living with spinal cord injury in the United States.

Secondary analysis of cross-sectional data from a multisite survey study. To describe associations between residential greenspace and psychological well-being among adults living with chronic spinal cord injury (SCI). Community. Participants were from the Spinal Cord Injury-Quality of Life (SCI-QOL) Calibration Study (N = 313). Geographic Information Systems (GIS) analysis was used to define five- and half-mile buffer areas around participants' residential addresses to represent community and neighborhood environments, respectively, and to create measures of natural and developed open greenspace. Associations of greenspace measures with two SCI-QOL psychological well-being domains (positive affect and depressive symptoms) were modeled using ordinary least squares (OLS) regression, adjusted for demographic, injury-related, and community socioeconomic characteristics. People living in a community with a moderate amount of natural greenspace reported less positive affect and more depressive symptoms compared to people living in a community with low natural greenspace. At the neighborhood level, a moderate amount of developed open space was associated with less positive affect and more depressive symptoms than a low amount of developed open space. Contrary to expectations, residential greenspace had a negative relationship with psychological well-being in this sample of adults with SCI. Understanding how and why natural spaces are associated with quality of life for people with mobility disabilities can influence public policy and urban planning designs to ensure that residential greenspaces are accessible and beneficial to all.

Psychometric properties of the spinal cord injury-quality of life (SCI-QOL) Resilience item bank in a sample with spinal cord injury and chronic pain.

To describe the psychometric properties (e.g., data distribution characteristics, convergent/discriminant validity, internal consistency reliability, and test administration characteristics) of the spinal cord injury quality of life measurement system (SCI-QOL) Resilience item bank delivered as a computer adaptive test (CAT) in a sample of individuals with chronic pain and spinal cord injury (SCI). Descriptive statistics were calculated to investigate variable data distribution characteristics. Correlation analyses were conducted for convergent and discriminant validity. Item response theory-derived reliability was calculated for the SCI-QOL Resilience CAT. One hundred thirty-three adults with SCI (N = 133; 73.5% male, 26.5% female) were enrolled. Sample mean T score on the SCI-QOL Resilience measure was 48.40, SD = 8.60 (min = 29.4; max = 70.0). The CAT administered between 4 (most common, 41.4% of cases) and 12 (9% of cases) items with the Mean#items = 5.73, SD = 2.45. The SCI-QOL Resilience CAT scores were normally distributed, with very low ceiling (0%) and floor (3%) effects. The SCI-QOL Resilience CAT had a reliability of 0.89, and the mean length of time for respondents to complete the SCI-QOL Resilience CAT was 44.34s. SCI-QOL Resilience CAT validity was supported by significant moderate correlations with pain acceptance, depressive symptoms, pain catastrophizing, positive affect and well-being, and pain interference (convergent validity) and small non-significant correlations with age, sex, injury level, pain intensity, mobility level, and years since injury (discriminant validity). The SCI-QOL Resilience CAT demonstrated good convergent and discriminant validity. The CAT administration characteristics were impressive: With few items (low response burden), the scale achieved good reliability.

The Effect of Exoskeletal-Assisted Walking on Spinal Cord Injury Bowel Function: Results from a Randomized Trial and Comparison to Other Physical Interventions.

Bowel function after spinal cord injury (SCI) is compromised because of a lack of voluntary control and reduction in bowel motility, often leading to incontinence and constipation not easily managed. Physical activity and upright posture may play a role in dealing with these issues. We performed a three-center, randomized, controlled, crossover clinical trial of exoskeletal-assisted walking (EAW) compared to usual activity (UA) in people with chronic SCI. As a secondary outcome measure, the effect of this intervention on bowel function was assessed using a 10-question bowel function survey, the Bristol Stool Form Scale (BSS) and the Spinal Cord Injury Quality of Life (SCI-QOL) Bowel Management Difficulties instrument. Fifty participants completed the study, with bowel data available for 49. The amount of time needed for the bowel program on average was reduced in 24% of the participants after EAW. A trend toward normalization of stool form was noted. There were no significant effects on patient-reported outcomes for bowel function for the SCI-QOL components, although the time since injury may have played a role. Subset analysis suggested that EAW produces a greater positive effect in men than women and may be more effective in motor-complete individuals with respect to stool consistency. EAW, along with other physical interventions previously investigated, may be able to play a previously underappreciated role in assisting with SCI-related bowel dysfunction.

Quality Of Life In Spinal Cord Injury Patients Before And After Exercise Intervention

More than 1 million people are living with a spinal cord injury (SCI) in the United States alone. Research suggests improvement in daily function as well as biochemical markers in SCI patients who participate in regular exercise. There is limited data on the specific impact of exercise as it pertains to Quality of Life (QOL), complications or general sense of wellbeing. PURPOSE: To obtain objective QOL data using validated SCI questionnaire instruments before and after exercises intervention done at the Claremont Club Perfect Step Program. METHODS: The Claremont Club Perfect Step is a fitness facility that has been providing structured exercise programs for patients with SCI for 10 years. We completed a survey of 41 patients regarding their QOL before and after entering this program. The survey questions were drawn from a validated Spinal Cord Injury—Quality of Life (SCI-QOL) survey. A matched-pair t test was used to compare the 6-month answers to the baseline measures of QOL. RESULTS: Patients with spinal cord injuries who participated in this program reported statistically significant improvements in 83 of 92 survey categories, including improved mental health, reduced complications and fewer or lower doses of medication. With the QOL scores ranging from 1 (lowest) to 5 (highest), the average score increased by 0.72 (18.8%), from 3.82 to 4.54. Measures of mood, energy and confidence significantly improved. Measures of depression reduced. Measures of pain and pain interference on social and work life significantly decreased. Lastly, bladder accidents or disruption of daily life due to bladder incontinence significantly improved. There was also a trend toward reduced urinary tract infections as well as reduced pressure sores or pressure injuries. DISCUSSION/CONCLUSIONS: The depth, breadth, and magnitude in improved QOL scores is impressive. These results indicate that exercise intervention for patients with SCI should be not be the last step, once traditional medical care has been exhausted, but an early intervention to maximize QOL and potentially reduce complications from SCI. Although structured exercise has often fallen outside the scope of traditional medical care for patients who experience SCI, it should be considered a first-line treatment that appears to be relatively safe and highly effective.

Integrating Spinal Cord Injury – Quality of Life instruments into rehabilitation: Implementation science to guide adoption of patient-reported outcome measures

Context/objective: This study describes a development strategy for integrating the Spinal Cord Injury – Quality of Life (SCI-QOL) item banks into inpatient spinal cord injury (SCI) rehabilitation and recommendations for protocol implementation. Design: We adopted an implementation science approach to develop a strategy for adapting and contextualizing SCI-QOL use during SCI rehabilitation. We conducted focus groups and stakeholder meetings with clinical assessment champions to (1) identify barriers and supports to SCI-QOL adoption; (2) reduce barriers and emphasize supports; (3) evaluate and select relevant SCI-QOL domains and item banks; (4) develop administration and reporting guidelines; and (5) identify hospital roles to alert with SCI-QOL results. Setting: A regional inpatient rehabilitation hospital. This study focuses on clinicians providing inpatient rehabilitation to patients with SCI. Participants: Fifty-nine clinicians, including physicians, speech language pathologists, occupational and physical therapists, nurses, and social workers providing care to SCI inpatients. Interventions: N/A. Outcome measures: N/A. Results: Clinicians identified the SCI-QOL domains that were most relevant to inpatient care; when SCI-QOL should be administered; what hospital roles were best suited for administering SCI-QOL; how results should be displayed in the electronic medical record; and which clinical roles needed notification of SCI-QOL results. Conclusions: Clinicians acknowledge the value of patient-reported outcome measures in inpatient SCI rehabilitation, but noted barriers to adoption. Engaging clinicians in the decision-making process for developing an implementation and administration protocol can inform strategies to overcome barriers and emphasize supports.

Measuring pain phenomena after spinal cord injury: Development and psychometric properties of the SCI-QOL Pain Interference and Pain Behavior assessment tools

Objective: To develop modern patient-reported outcome measures that assess pain interference and pain behavior after spinal cord injury (SCI). Design: Grounded-theory based qualitative item development; large-scale item calibration field-testing; confirmatory factor analyses; graded response model item response theory analyses; statistical linking techniques to transform scores to the Patient Reported Outcome Measurement Information System (PROMIS) metric. Setting: Five SCI Model Systems centers and one Department of Veterans Affairs medical center in the United States. Participants: Adults with traumatic SCI. Interventions: N/A. Outcome Measures: Spinal Cord Injury - Quality of Life (SCI-QOL) Pain Interference item bank, SCI-QOL Pain Interference short form, and SCI-QOL Pain Behavior scale. Results: Seven hundred fifty-seven individuals with traumatic SCI completed 58 items addressing various aspects of pain. Items were then separated by whether they assessed pain interference or pain behavior, and poorly functioning items were removed. Confirmatory factor analyses confirmed that each set of items was unidimensional, and item response theory analyses were used to estimate slopes and thresholds for the items. Ultimately, 7 items (4 from PROMIS) comprised the Pain Behavior scale and 25 items (18 from PROMIS) comprised the Pain Interference item bank. Ten of these 25 items were selected to form the Pain Interference short form. Conclusions: The SCI-QOL Pain Interference item bank and the SCI-QOL Pain Behavior scale demonstrated robust psychometric properties. The Pain Interference item bank is available as a computer adaptive test or short form for research and clinical applications, and scores are transformed to the PROMIS metric.

Good validity of the international spinal cord injury quality of life basic data set.

Cross-sectional validation study. To examine the construct and concurrent validity of the International Spinal Cord Injury (SCI) Quality of Life (QoL) Basic Data Set. Dutch community. People 28-65 years of age, who obtained their SCI between 18 and 35 years of age, were at least 10 years post SCI and were wheelchair users in daily life. MEASURE(S): The International SCI QoL Basic Data Set consists of three single items on satisfaction with life as a whole, physical health and psychological health (0=complete dissatisfaction; 10=complete satisfaction). Reference measures were the Mental Health Inventory-5 and three items of the World Health Organization Quality of Life measure. Data of 261 participants were available. Mean time after SCI was 24.1 years (s.d. 9.1); 90.4% had a traumatic SCI, 81.5% a motor complete SCI and 40% had tetraplegia. Mean age was 47.9 years (s.d. 8.8) and 73.2% were male. Mean scores were 6.9 (s.d. 1.9) for general QoL, 5.8 (s.d. 2.2) for physical health and 7.1 (s.d. 1.9) for psychological health. No floor or ceiling effects were found. Strong inter-correlations (0.48-0.71) were found between the items, and Cronbach's alpha of the scale was good (0.81). Correlations with the reference measures showed the strongest correlations between the WHOQOL general satisfaction item and general QoL (0.64), the WHOQOL health and daily activities items and physical health (0.69 and 0.60) and the Mental Health Inventory-5 and psychological health (0.70). This first validity study of the International SCI QoL Basic Data Set shows that it appears valid for persons with SCI.

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

Context/ObjectiveThe 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.DesignClassical 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).SettingFive Model SCI System centers and one Department of Veterans Affairs Medical Center across the United States.ParticipantsAdults with traumatic SCI.Interventionsn/aOutcome Measuresn/aResultsThe 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).ConclusionThe 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.

Measuring depression after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Depression item bank and linkage with PHQ-9

ObjectiveTo develop a calibrated spinal cord injury-quality of life (SCI-QOL) item bank, computer adaptive test (CAT), and short form to assess depressive symptoms experienced by individuals with SCI, transform scores to the Patient Reported Outcomes Measurement Information System (PROMIS) metric, and create a crosswalk to the Patient Health Questionnaire (PHQ)-9.DesignWe used grounded-theory based qualitative item development methods, large-scale item calibration field testing, confirmatory factor analysis, item response theory (IRT) analyses, and statistical linking techniques to transform scores to a PROMIS metric and to provide a crosswalk with the PHQ-9.SettingFive SCI Model System centers and one Department of Veterans Affairs medical center in the United States.ParticipantsAdults with traumatic SCI.Main Outcome MeasuresSpinal Cord Injury – Quality of Life (SCI-QOL) Depression Item BankResultsIndividuals with SCI were involved in all phases of SCI-QOL development. A sample of 716 individuals with traumatic SCI completed 35 items assessing depression, 18 of which were PROMIS items. After removing 7 non-PROMIS items, factor analyses confirmed a unidimensional pool of items. We used a graded response IRT model to estimate slopes and thresholds for the 28 retained items. The SCI-QOL Depression measure correlated 0.76 with the PHQ-9.ConclusionsThe SCI-QOL Depression item bank provides a reliable and sensitive measure of depressive symptoms with scores reported in terms of general population norms. We provide a crosswalk to the PHQ-9 to facilitate comparisons between measures. The item bank may be administered as a CAT or as a short form and is suitable for research and clinical applications.

The Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system: Development, psychometrics, and item bank calibration

Though spinal cord injury (SCI) was historically regarded as an ailment not to betreated, 1 medical, pharmaceutical, and technological advances in the 20th and 21st centuries have improved acute and long-term SCI rehabilitation outcomes. Consequently, SCI has become an increasingly common cause of long-term disability, with over 250 000 Americans 2,3 and over 85 000 Canadians 4 living with SCI. Traumatic SCI is a catastrophic injury that changes the lives of individuals in a split second. SCI is characterized by a broad and unique set of functional limitations and secondary complications that affect physical (e.g. altered urinary and bowel function, 5–7 pressure ulcers, 8,9 chronic and neuropathic pain) cognitive, 10,11 emotional (e.g. depression, 12,13 anxiety disorders), 14 and social (e.g. unemployment) 15 areas of health and functioning. Individuals who sustain SCI must adjust immediately to a new way of life that is often characterized by significant physical limitations, alterations to basic physiological functions, intense emotions, disruption of social relationships, and barriers to participating in their usual activities – essentially, every possible area of health-related quality of life (HRQOL). Individuals with SCI have described the secondary complications of SCI to be equally or even more troublesome than the primary functional limitationsofSCI,suchastheinabilitytowalk. 16 Furthermore,

Measuring resilience after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Resilience item bank and short form

ObjectiveTo describe the development and psychometric properties of the Spinal Cord Injury - Quality of Life (SCI-QOL) Resilience item bank and short form.DesignUsing a mixed-methods design, we developed and tested a resilience item bank through the use of focus groups with individuals with SCI and clinicians with expertise in SCI, cognitive interviews, and item-response theory based analytic approaches, including tests of model fit and differential item functioning (DIF).SettingWe tested a 32-item pool at several medical institutions across the United States, including the University of Michigan, Kessler Foundation, the Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital and the James J. Peters/Bronx Department of Veterans Affairs medical center.ParticipantsA total of 717 individuals with SCI completed the Resilience items.ResultsA unidimensional model was observed (CFI = 0.968; RMSEA = 0.074) and measurement precision was good (theta range between −3.1 and 0.9). Ten items were flagged for DIF, however, after examination of effect sizes we found this to be negligible with little practical impact on score estimates. The final calibrated item bank resulted in 21 retained items.ConclusionThis study indicates that the SCI-QOL Resilience item bank represents a psychometrically robust measurement tool. Short form items are also suggested and computer adaptive tests are available.

Measuring self-esteem after spinal cord injury: Development, validation and psychometric characteristics of the SCI-QOL Self-esteem item bank and short form

ObjectiveTo describe the development and psychometric properties of the Spinal Cord Injury-Quality of Life (SCI-QOL) Self-esteem item bank.DesignUsing a mixed-methods design, we developed and tested a self-esteem item bank through the use of focus groups with individuals with SCI and clinicians with expertise in SCI, cognitive interviews, and item-response theory- (IRT) based analytic approaches, including tests of model fit, differential item functioning (DIF) and precision.SettingWe tested a pool of 30 items at several medical institutions across the United States, including the University of Michigan, Kessler Foundation, the Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital, and the James J. Peters/Bronx Department of Veterans Affairs hospital.ParticipantsA total of 717 individuals with SCI completed the self-esteem items.ResultsA unidimensional model was observed (CFI = 0.946; RMSEA = 0.087) and measurement precision was good (theta range between −2.7 and 0.7). Eleven items were flagged for DIF; however, effect sizes were negligible with little practical impact on score estimates. The final calibrated item bank resulted in 23 retained items.ConclusionThis study indicates that the SCI-QOL Self-esteem item bank represents a psychometrically robust measurement tool. Short form items are also suggested and computer adaptive tests are available.