Measuring psychological trauma after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Psychological Trauma item bank and short form

ObjectiveTo describe the development and psychometric properties of the SCI-QOL Psychological Trauma item bank and short form.DesignUsing a mixed-methods design, we developed and tested a Psychological Trauma item bank with patient and provider focus groups, cognitive interviews, and item response theory based analytic approaches, including tests of model fit, differential item functioning (DIF) and precision.SettingWe tested a 31-item pool at several medical institutions across the United States, including the University of Michigan, Kessler Foundation, Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital and the James J. Peters/Bronx Veterans Administration hospital.ParticipantsA total of 716 individuals with SCI completed the trauma itemsResultsThe 31 items fit a unidimensional model (CFI=0.952; RMSEA=0.061) and demonstrated good precision (theta range between 0.6 and 2.5). Nine items demonstrated negligible DIF with little impact on score estimates. The final calibrated item bank contains 19 itemsConclusionThe SCI-QOL Psychological Trauma item bank is a psychometrically robust measurement tool from which a short form and a computer adaptive test (CAT) version are available.     

Measuring stigma after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Stigma item bank and short form

ObjectiveTo develop a calibrated item bank and computer adaptive test (CAT) to assess the effects of stigma on health-related quality of life in individuals with spinal cord injury (SCI).DesignGrounded-theory based qualitative item development methods, large-scale item calibration field testing, confirmatory factor analysis, and item response theory (IRT)-based psychometric analyses.SettingFive SCI Model System centers and one Department of Veterans Affairs medical center in the United States.ParticipantsAdults with traumatic SCI.ResultsA sample of 611 individuals with traumatic SCI completed 30 items assessing SCI-related stigma. After 7 items were iteratively removed, factor analyses confirmed a unidimensional pool of items. Graded Response Model IRT analyses were used to estimate slopes and thresholds for the final 23 items.ConclusionsThe SCI-QOL Stigma item bank is unique not only in the assessment of SCI-related stigma but also in the inclusion of individuals with SCI in all phases of its development. Use of confirmatory factor analytic and IRT methods provide flexibility and precision of measurement. The item bank may be administered as a CAT or as a 10-item fixed-length short form and can be used for research and clinical applications.     

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.ResultsIndividuals 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.     

Measuring anxiety after spinal cord injury: Development and psychometric characteristics of the SCI-QOL Anxiety item bank and linkage with GAD-7

ObjectiveTo develop a calibrated item bank and computer adaptive test to assess anxiety symptoms in individuals with spinal cord injury (SCI), transform scores to the Patient Reported Outcomes Measurement Information System (PROMIS) metric, and create a statistical linkage with the Generalized Anxiety Disorder (GAD)-7, a widely used anxiety measure.DesignGrounded-theory based qualitative item development methods; large-scale item calibration field testing; confirmatory factor analysis; graded response model item response theory analyses; statistical linking techniques to transform scores to a PROMIS metric; and linkage with the GAD-7.SettingFive SCI Model System centers and one Department of Veterans Affairs medical center in the United States.ParticipantsAdults with traumatic SCI.ResultsSeven hundred sixteen individuals with traumatic SCI completed 38 items assessing anxiety, 17 of which were PROMIS items. After 13 items (including 2 PROMIS items) were removed, factor analyses confirmed unidimensionality. Item response theory analyses were used to estimate slopes and thresholds for the final 25 items (15 from PROMIS). The observed Pearson correlation between the SCI-QOL Anxiety and GAD-7 scores was 0.67.ConclusionsThe SCI-QOL Anxiety item bank demonstrates excellent psychometric properties and is available as a computer adaptive test or short form for research and clinical applications. SCI-QOL Anxiety scores have been transformed to the PROMIS metric and we provide a method to link SCI-QOL Anxiety scores with those of the GAD-7.     

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.     

Measuring grief and loss after spinal cord injury: Development,validation and psychometric characteristics of the SCI-QOL Grief and Loss item bank and short form

ObjectiveTo develop an item response theory (IRT) calibrated Grief and Loss item bank as part of the Spinal Cord Injury – Quality of Life (SCI-QOL) measurement system.DesignA literature review guided framework development of grief/loss. New items were created from focus groups. Items were revised based on expert review and patient feedback and were then field tested. Analyses included confirmatory factor analysis (CFA), graded response IRT modeling and evaluation of differential item functioning (DIF).SettingWe tested a 20-item pool at several rehabilitation centers across the United States, including the University of Michigan, Kessler Foundation, 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 answered the grief and loss questions.ResultsThe final calibrated item bank resulted in 17 retained items. A unidimensional model was observed (CFI = 0.976; RMSEA = 0.078) and measurement precision was good (theta range between −1.48 to 2.48). Ten items were flagged for DIF, however, after examination of effect sizes found this to be negligible with little practical impact on score estimates.ConclusionsThis study indicates that the SCI-QOL Grief and Loss item bank represents a psychometrically robust measurement tool. Short form items are also suggested and computer adaptive tests are available.     

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.     

Development and psychometric characteristics of the SCI-QOL Pressure Ulcers scale and short form

ObjectiveTo develop a self-reported measure of the subjective impact of pressure ulcers on health-related quality of life (HRQOL) in individuals with spinal cord injury (SCI) as part of the SCI quality of life (SCI-QOL) measurement system.DesignGrounded-theory based qualitative item development methods, large-scale item calibration testing, confirmatory factor analysis (CFA), and item response theory-based psychometric analysis.SettingFive SCI Model System centers and one Department of Veterans Affairs medical center in the United States.ParticipantsAdults with traumatic SCI.Results189 individuals with traumatic SCI who experienced a pressure ulcer within the past 7 days completed 30 items related to pressure ulcers. CFA confirmed a unidimensional pool of items. IRT analyses were conducted. A constrained Graded Response Model with a constant slope parameter was used to estimate item thresholds for the 12 retained items.ConclusionsThe 12-item SCI-QOL Pressure Ulcers scale is unique in that it is specifically targeted to individuals with spinal cord injury and at every stage of development has included input from individuals with SCI. Furthermore, use of CFA and IRT methods provide flexibility and precision of measurement. The scale may be administered in its entirety or as a 7-item “short form” and is available for both research and clinical practice.     

Development and psychometric characteristics of the SCI-QOL Bladder Management Difficulties and Bowel Management Difficulties item banks and short forms and the SCI-QOL Bladder Complications scale

ObjectiveTo describe the development and psychometric properties of the Spinal Cord Injury – Quality of Life (SCI-QOL) Bladder Management Difficulties and Bowel Management Difficulties item banks and Bladder Complications scale.DesignUsing a mixed-methods design, a pool of items assessing bladder and bowel-related concerns were developed using focus groups with individuals with spinal cord injury (SCI) and SCI clinicians, cognitive interviews, and item response theory (IRT) analytic approaches, including tests of model fit and differential item functioning.SettingThirty-eight bladder items and 52 bowel items were tested at the University of Michigan, Kessler Foundation Research Center, the Rehabilitation Institute of Chicago, the University of Washington, Craig Hospital, and the James J. Peters VA Medical Center, Bronx, NY.ParticipantsSeven hundred fifty-seven adults with traumatic SCI.ResultsThe final item banks demonstrated unidimensionality (Bladder Management Difficulties CFI = 0.965; RMSEA = 0.093; Bowel Management Difficulties CFI = 0.955; RMSEA = 0.078) and acceptable fit to a graded response IRT model. The final calibrated Bladder Management Difficulties bank includes 15 items, and the final Bowel Management Difficulties item bank consists of 26 items. Additionally, 5 items related to urinary tract infections (UTI) did not fit with the larger Bladder Management Difficulties item bank but performed relatively well independently (CFI = 0.992, RMSEA = 0.050) and were thus retained as a separate scale.ConclusionThe SCI-QOL Bladder Management Difficulties and Bowel Management Difficulties item banks are psychometrically robust and are available as computer adaptive tests or short forms. The SCI-QOL Bladder Complications scale is a brief, fixed-length outcomes instrument for individuals with a UTI.     

Methodology for the development and calibration of the SCI-QOL item banks

ObjectiveTo develop a comprehensive, psychometrically sound, and conceptually grounded patient reported outcomes (PRO) measurement system for individuals with spinal cord injury (SCI).MethodsIndividual interviews (n = 44) and focus groups (n = 65 individuals with SCI and n = 42 SCI clinicians) were used to select key domains for inclusion and to develop PRO items. Verbatim items from other cutting-edge measurement systems (i.e. PROMIS, Neuro-QOL) were included to facilitate linkage and cross-population comparison. Items were field tested in a large sample of individuals with traumatic SCI (n = 877). Dimensionality was assessed with confirmatory factor analysis. Local item dependence and differential item functioning were assessed, and items were calibrated using the item response theory (IRT) graded response model. Finally, computer adaptive tests (CATs) and short forms were administered in a new sample (n = 245) to assess test-retest reliability and stability.ResultsWe developed 14 unidimensional calibrated item banks and 3 calibrated scales across physical, emotional, and social health domains. When combined with the five Spinal Cord Injury – Functional Index physical function banks, the final SCI-QOL system consists of 22 IRT-calibrated item banks/scales. Item banks may be administered as CATs or short forms. Scales may be administered in a fixed-length format only.ConclusionsThe SCI-QOL measurement system provides SCI researchers and clinicians with a comprehensive, relevant and psychometrically robust system for measurement of physical-medical, physical-functional, emotional, and social outcomes. All SCI-QOL instruments are freely available on Assessment Center^SM.     

Retrospective study of functional outcomes and disability after non-ischaemic vascular causes of spinal cord dysfunction

Objective: Describe demographic characteristics, functional outcomes and disability following rehabilitation for non-ischemic vascular spinal cord dysfunction (SCDys).Design: Retrospective, open cohort, case series.Setting: Tertiary rehabilitation unit, Victoria, Australia.Participants: Patients with non-ischemic vascular SCDys admitted over a 21-year-period (01/01/1995–31/12/2015) were identified using International Classification of Diseases codes.Outcome Measures: Demographic characteristics, etiology, neurologic classification, length of stay (LOS), and complications. On admission and discharge, the following were collected: functional independence measure (FIM) motor subscale, details on bowel, bladder, mobility, living arrangement, and support services.Results: 36 patients (female 58%; mean age 69 ± 16 years) were identified. The main causes of non-ischemic vascular SCDys were epidural hematoma (39%), dural arteriovenous fistula (17%), and arteriovenous malformation (11%). 22 cases (61%) were iatrogenic. Most (86%) had incomplete paraplegia. Urinary tract infection was the most common complication (64%). Median LOS in rehabilitation was 68 days. Significant improvement in FIM motor scores was observed from admission (median 25, interquartile range [IQR] 20–38) to discharge (median 69, IQR 38–77) (P < 0.001). On discharge, 4 patients (11%) walked >100 m unaided, 6 (17%) walked >100 m with assistive device, 10 (28%) walked >10 m with assistive device, 15 (41%) were wheelchair dependent and 1 (3%) patient remained non-mobile. 20 patients (56%) were discharged home, 8 (22%) to nursing home, and 8 (22%) transferred to another hospital.Conclusion: Most patients returned home with significantly improved functional outcomes compared to rehabilitation admission, but with the majority having ongoing major disabilities based on FIM motor scores.     

Development and psychometric characteristics of the SCI-QOL Ability to Participate and Satisfaction with Social Roles and Activities item banks and short forms

ObjectiveTo develop a spinal cord injury (SCI)-focused version of PROMIS and Neuro-QOL social domain item banks; evaluate the psychometric properties of items developed for adults with SCI; and report information to facilitate clinical and research use.DesignWe used a mixed-methods design to develop and evaluate Ability to Participate in Social Roles and Activities and Satisfaction with Social Roles and Activities items. Focus groups helped define the constructs; cognitive interviews helped revise items; and confirmatory factor analysis and item response theory methods helped calibrate item banks and evaluate differential item functioning related to demographic and injury characteristics.SettingFive SCI Model System sites and one Veterans Administration medical center.ParticipantsThe calibration sample consisted of 641 individuals; a reliability sample consisted of 245 individuals residing in the community.ResultsA subset of 27 Ability to Participate and 35 Satisfaction items demonstrated good measurement properties and negligible differential item functioning related to demographic and injury characteristics. The SCI-specific measures correlate strongly with the PROMIS and Neuro-QOL versions. Ten item short forms correlate >0.96 with the full banks. Variable-length CATs with a minimum of 4 items, variable-length CATs with a minimum of 8 items, fixed-length CATs of 10 items, and the 10-item short forms demonstrate construct coverage and measurement error that is comparable to the full item bank.ConclusionThe Ability to Participate and Satisfaction with Social Roles and Activities CATs and short forms demonstrate excellent psychometric properties and are suitable for clinical and research applications.     

Team size in spinal cord injury inpatient rehabilitation and patient participation in therapy sessions: The SCIRehab Project

Context/objective

Rehabilitation teams generally are described as consisting of a single representative of 6–8 disciplines, but research suggests that the number of individuals involved may be much larger. This study aimed to determine the size of teams in spinal cord injury (SCI) rehabilitation, and the effect of team size on patients'' active participation in their treatment sessions.

Design

Prospective observational study.

Setting

Six SCI rehabilitation centers.

Participants

A total of 1376 patients with traumatic SCI admitted for first rehabilitation.

Interventions

Not applicable.

Outcome measures

Number of treatment sessions, by discipline and overall clinician rating of active participation of the patient; Treatment Concentration Index (TCI) calculated as Σp_k² (where p refers to the proportion of treatment sessions delivered by team member k).

Results

The average patient was treated by 39.3 different clinicians. The numbers were especially high for physical therapy (mean: 8.8), occupational therapy (7.2), and nursing (16.1). TCI was 0.08 overall; it varied by discipline. TCI was negatively correlated with length of stay, except for psychology. Participation ratings were minimally affected by the number of sessions the patient and the therapist had worked together.

Conclusions

In SCI rehabilitation, teams are at least as large as suggested by previous research. However, this may not mean lack of familiarity of patient and therapist with one another, or alternatively, the possibly weak therapeutic alliance does not affect the patients'' active participation in their sessions. Further research is needed to determine whether there are negative effects on rehabilitation outcomes.     

不同延续性护理方式对脊髓损伤患者生存质量及康复的影响

目的 :评价家庭访视、电话随访、护理门诊随访三种延续性护理方式对脊髓损伤患者的生存质量和康复的影响。方法:选择在我院治疗的90例脊髓损伤患者,随机分为3组,每组30例,分别采用家庭访视(A组)、电话随访(B组)和护理门诊随访(C组)的方式施以延续性护理,以功能独立性量表、社会交往测定表、社会支持评定量表、生存质量测定量表简表及并发症调查表评价出院12个月后三组患者的生活质量及康复状况。结果:三组患者的年龄、性别比、损伤节段、损伤原因、ASIA分级及干预前的生存质量评分均无统计学差异(P0.05);干预12个月后,三组患者的生存质量评分与干预前比较均有显著性提高(P0.05);A组患者的生存质量评分显著高于B组;A组患者的便秘(10.0%)、尿路感染(6.7%)、肺部感染(0)的发生率和再入院率(19.0%)均低于对照B组(P0.05),压疮发生率(6.7%)低于B组(36.7%)和C组(13.3%)(P0.05)。结论:三种延续性护理方式均可明显提高患者的生存质量,但家庭访视的效果更好,可降低患者再次入院率及并发症。     

脑脊液引流防治胸腹主动脉瘤腔内修复术后脊髓损伤疗效及安全性的系统评价和Meta分析

目的:系统评价应用脑脊液引流术(CSFD)防治胸腹主动脉瘤(TAAA)腔内修复术后脊髓损伤(截瘫、轻瘫)的疗效和安全性。方法:计算机检索多个国内外文献数据库,并辅以手工检索。收集公开发表的关于CSFD防治TAAA腔内修复术后脊髓损伤的随机对照试验(RCT)。采用RevMan 5.3统计软件进行系统评价和Meta分析。结果:共纳入5个RCT,424例患者,其中行CSFD治疗232例(CSFD),未行CSFD治疗192例(对照组)。Meta分析结果显示,CSFD组较对照组脊髓损伤发生率明显低于对照组(OR=0.45,95%CI=0.26～0.76,P=0.003);治疗和随访期末,CSFD组的总病死率低于对照组,但差异无统计学意义(OR=0.67,95%CI=0.31～1.44,P=0.31);CSFD组6例发生CSFD治疗引起的相关并发症,对照组0例发生,但两组并发症发生率差异无统计学意义(OR=4.38,95%CI=0.75～25.49,P=0.10)。结论:CSFD预防和治疗TAAA腔内修复术后脊髓缺血损伤疗效确切,但是证据质量和推荐等级较低。操作风险尚存在一定争议,对于有高度截瘫风险或者是已表现为截瘫的患者,实施CSFD治疗是可取的;而对于发生截瘫风险较低且存在出血等并发症的患者,应充分评估风险-获益比,谨慎操作。