Development and assessment of a community follow-up questionnaire for the Rick Hansen spinal cord injury registry.

To develop a comprehensive community follow-up questionnaire for participants enrolled in the Rick Hansen Spinal Cord Injury Registry (RHSCIR). Development and preliminary assessment of measurement properties (reliability and validity) of instruments used during a community follow-up and aligned with the International Classification of Functioning, Disability and Health (ICF). General community setting. People with spinal cord injury (N=50) living in the community. Not applicable. A comprehensive follow-up questionnaire, referred to as the RHSCIR Community Follow-up Questionnaire Version 2.0 (CFQ-V2.0), includes 8 instruments. Four new instruments were developed, 2 existing instruments were modified, and 2 previously published instruments were included. Intra- and interrater reliability statistics (Gwet's AC1) support the measurement properties of the new and modified instruments. Correlations between new and existing instruments and between groups based on the severity of injury support the construct validity of the secondary complications and person-perceived participation instruments. The RHSCIR CFQ-V2.0 is a comprehensive community follow-up questionnaire that aligns to the ICF. Initial study results suggest that it covers all relevant aspects of community living, and the measurement properties are promising.

Noreau L ，Cobb J ，Bélanger LM ，Dvorak MF ，Leblond J ，Noonan VK ... -  《-》

Comparison of the Utrecht Scale for Evaluation of Rehabilitation-Participation with the ICF Measure of Participation and Activities Screener and the WHO Disability Assessment Schedule II in persons with spinal cord injury.

To validate the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation) in persons with spinal cord injury (SCI) using 2 International Classification of Functioning, Disability and Health (ICF)-based instruments: the ICF Measure of Participation and Activities-Screener (IMPACT-S) and the World Health Organization Disability Assessment Schedule II (WHODAS II). Validation study. Score distributions, internal consistency, and concurrent and discriminant validity were evaluated. The community. Convenience sample of persons (N=157) with long-term SCI living in The Netherlands. Not applicable. USER-Participation, IMPACT-S, and WHODAS II. No instruments showed floor effects, and 3 out of 6 WHODAS II domains showed ceiling effects. Most scores showed adequate internal consistency (α≥.70), except for the USER-Participation frequency scale (.51) and 2 WHODAS II domains (.58-.60). Spearman correlation coefficients between the segregate USER-Participation scales were <.60 (range, .39-.46), showing that they cover separate aspects of participation. Concurrent validity of the USER-Participation was shown because >75% (83.3%) of the 24 hypotheses (Spearman correlation coefficients above or below .60) with the other measurement instruments were confirmed. Concurrent validity between the IMPACT-S and WHODAS II was not shown (53.8% of 13 hypotheses confirmed). All scores except 4 WHODAS II domains showed significant differences in participation between persons with paraplegia and tetraplegia. The USER-Participation showed generally satisfactory psychometric properties in Dutch persons with long-term SCI living in the community. The IMPACT-S showed the best psychometric properties, and the WHODAS II showed less favorable results. Future research on the USER-Participation should focus on validation in other languages and different diagnostic groups.

van der Zee CH ，Post MW ，Brinkhof MW ，Wagenaar RC ... -  《-》

The Rick Hansen Spinal Cord Injury Registry (RHSCIR): a national patient-registry.

Noonan VK ，Kwon BK ，Soril L ，Fehlings MG ，Hurlbert RJ ，Townson A ，Johnson M ，Dvorak MF ，RHSCIR Network ... -  《-》

A simplified clinical prediction rule for prognosticating independent walking after spinal cord injury: a prospective study from a Canadian multicenter spinal cord injury registry.

Traumatic spinal cord injury (SCI) is a debilitating condition with limited treatment options for neurologic or functional recovery. The ability to predict the prognosis of walking post injury with emerging prediction models could aid in rehabilitation strategies and reintegration into the community. To revalidate an existing clinical prediction model for independent ambulation (van Middendorp et al., 2011) using acute and long-term post-injury follow-up data, and to investigatethe accuracy of a simplified model using prospectively collected data from a Canadian multicenter SCI database, the Rick Hansen Spinal Cord Injury Registry (RHSCIR). Prospective cohort study. The analysis cohort consisted of 278 adult individuals with traumatic SCI enrolled in the RHSCIR for whom complete neurologic examination data and Functional Independence Measure (FIM) outcome data were available. The FIM locomotor score was used to assess independent walking ability (defined as modified or complete independence in walk or combined walk and wheelchair modality) at 1-year follow-up for each participant. A logistic regression (LR) model based on age and four neurologic variables was applied to our cohort of 278 RHSCIR participants. Additionally, a simplified LR model was created. The Hosmer-Lemeshow goodness of fit test was used to check if the predictive model is applicable to our data set. The performance of the model was verified by calculating the area under the receiver operating characteristic curve (AUC). The accuracy of the model was tested using a cross-validation technique. This study was supported by a grant from The Ottawa Hospital Academic Medical Organization ($50,000 over 2 years). The RHSCIR is sponsored by the Rick Hansen Institute and is supported by funding from Health Canada, Western Economic Diversification Canada, and the provincial governments of Alberta, British Columbia, Manitoba, and Ontario. ET and JP report receiving grants from the Rick Hansen Institute (approximately $60,000 and $30,000 per year, respectively). DMR reports receiving remuneration for consulting services provided to Palladian Health, LLC and Pacira Pharmaceuticals, Inc ($20,000-$30,000 annually), although neither relationship presents a potential conflict of interest with the submitted work. KEH received a grant for involvement in the present study from the Government of Canada as part of the Canada Summer Jobs Program ($3,000). JP reports receiving an educational grant from Medtronic Canada outside of the submitted work ($75,000 annually). TM reports receiving educational fellowship support from AO Spine, AO Trauma, and Medtronic; however, none of these relationships are financial in nature. All remaining authors have no conflicts of interest to disclose. The fitted prediction model generated 85% overall classification accuracy, 79% sensitivity, and 90% specificity. The prediction model was able to accurately classify independent walking ability (AUC 0.889, 95% confidence interval [CI] 0.846-0.933, p<.001) compared with the existing prediction model, despite the use of a different outcome measure (FIM vs. Spinal Cord Independence Measure) to qualify walking ability. A simplified, three-variable LR model based on age and two neurologic variables had an overall classification accuracy of 84%, with 76% sensitivity and 90% specificity, demonstrating comparable accuracy with its five-variable prediction model counterpart. The AUC was 0.866 (95% CI 0.816-0.916, p<.01), only marginally less than that of the existing prediction model. A simplified predictive model with similar accuracy to a more complex model for predicting independent walking was created, which improves utility in a clinical setting. Such models will allow clinicians to better predict the prognosis of ambulation in individuals who have sustained a traumatic SCI.

Hicks KE ，Zhao Y ，Fallah N ，Rivers CS ，Noonan VK ，Plashkes T ，Wai EK ，Roffey DM ，Tsai EC ，Paquet J ，Attabib N ，Marion T ，Ahn H ，Phan P ，RHSCIR Network ... -  《-》

Mechanical ventilation, health, and quality of life following spinal cord injury.

To examine differences in perceived quality of life (QOL) at 1 year postinjury between people with tetraplegia who required mechanical ventilation assistance at discharge from rehabilitation and those who did not. Prospective cross-sectional examination of people with spinal cord injury (SCI) drawn from the SCI Model Systems National Database. Community. People with tetraplegia (N=1635) who sustained traumatic SCI between January 1, 1994, and September 30, 2008, who completed a 1-year follow-up interview, including 79 people who required at least some use of a ventilator at discharge from rehabilitation. Not applicable. Satisfaction With Life Scale (SWLS); Craig Handicap Assessment and Reporting Technique (CHART)-Short Form Physical Independence, Mobility, Social Integration, and Occupation subscales; Patient Health Questionnaire-9 (PHQ-9), Medical Outcomes Study 36-Item Short-Form Health Survey self-perceived health status. Significant differences were found between the ventilator-user (VU) group and non-ventilator-user (NVU) group for cause of trauma, proportion with complete injury, neurologic impairment level, and number of rehospitalizations. The NVU group had significantly higher SWLS and CHART Social Integration scores than the VU group after controlling for selected covariates. The NVU group also had more positive perceived health status compared with a year previously and a lower incidence of depression assessed by using the PHQ-9 than the VU group. There were no significant differences between groups for perceived current health status. People in this study who did not require mechanical ventilation at discharge from rehabilitation post-SCI reported generally better health and improved QOL compared with those who required ventilator assistance at 1 year postinjury. Nonetheless, the literature suggests that perceptions of QOL improve as people live in the community for longer periods.

Charlifue S ，Apple D ，Burns SP ，Chen D ，Cuthbert JP ，Donovan WH ，Lammertse DP ，Meade MA ，Pretz CR ... -  《-》