Standardization of Data for Clinical Use and Research in Spinal Cord Injury

Increased survival after spinal cord injury (SCI) worldwide has enhanced the need for quality data that can be compared and shared between centers, countries, as well as across research studies, to better understand how best to prevent and treat SCI. Such data should be standardized and be able to be uniformly collected at any SCI center or within any SCI study. Standardization will make it possible to collect information from larger SCI populations for multi-center research studies. With this aim, the international SCI community has obtained consensus regarding the best available data and measures for use in SCI clinical practice and research. Reporting of SCI data is likewise standardized. Data elements are continuously updated and developed using an open and transparent process. There are ongoing internal, as well as external review processes, where all interested parties are encouraged to participate. The purpose of this review paper is to provide an overview of the initiatives to standardize data including the International Spinal Cord Society’s International SCI Data Sets and the National Institutes of Health, National Institute of Neurological Disorders and Stroke Common Data Elements Project within SCI and discuss future opportunities

COMPARING THE VALIDITY OF FIVE PARTICIPATION INSTRUMENTS IN PERSONS WITH SPINAL CONDITIONS

Objective: To evaluate and compare the construct validity of 5 participation instruments developed using the International Classification of Functioning, Disability and Health (ICF). Methods: A total of 545 subjects diagnosed and treated for a spinal condition at an acute hospital were followed-up and consented to complete a questionnaire. Subjects completed 5 participation instruments (Impact on Participation and Autonomy (IPA), Keele Assessment of Participation (KAP), Participation Measure-Post Acute Care (PM-PAC), Participation Objective Participation Subjective (POPS), World Health Organization Disability Assessment Schedule II (WHODAS II)). In addition, each subject completed a health status instrument and a quality of life instrument. The dimensionality, convergent/discriminant validity and known-group validity of the participation instruments were assessed. Results: A confirmatory factor analysis of the facture structure for the IPA and PM-PAC demonstrated adequate model fit. For convergent/discriminant validity, correlations were generally higher among similar domains of the WHODAS II, IPA, KAP and PM-PAC, and as expected the lowest correlations were observed with the objective domains of the POPS. Most instruments demonstrated known-group validity. Conclusion: Differences in the construct validity evidence of the POPS compared with the other 4 instruments were noted. To date, there is no gold standard for measuring participation, and clinicians and researchers should consider the type of information required prior to selecting an instrument

Enabling knowledge translation: implementation of a web-based tool for independent walking prediction after traumatic spinal cord injury

IntroductionSeveral clinical prediction rules (CPRs) have been published, but few are easily accessible or convenient for clinicians to use in practice. We aimed to develop, implement, and describe the process of building a web-based CPR for predicting independent walking 1-year after a traumatic spinal cord injury (TSCI).MethodsUsing the published and validated CPR, a front-end web application called “Ambulation” was built using HyperText Markup Language (HTML), Cascading Style Sheets (CSS), and JavaScript. A survey was created using QualtricsXM Software to gather insights on the application's usability and user experience. Website activity was monitored using Google Analytics. Ambulation was developed with a core team of seven clinicians and researchers. To refine the app's content, website design, and utility, 20 professionals from different disciplines, including persons with lived experience, were consulted.ResultsAfter 11 revisions, Ambulation was uploaded onto a unique web domain and launched (www.ambulation.ca) as a pilot with 30 clinicians (surgeons, physiatrists, and physiotherapists). The website consists of five web pages: Home, Calculation, Team, Contact, and Privacy Policy. Responses from the user survey (n = 6) were positive and provided insight into the usability of the tool and its clinical utility (e.g., helpful in discharge planning and rehabilitation), and the overall face validity of the CPR. Since its public release on February 7, 2022, to February 28, 2023, Ambulation had 594 total users, 565 (95.1%) new users, 26 (4.4%) returning users, 363 (61.1%) engaged sessions (i.e., the number of sessions that lasted 10 seconds/longer, had one/more conversion events e.g., performing the calculation, or two/more page or screen views), and the majority of the users originating from the United States (39.9%) and Canada (38.2%).DiscussionAmbulation is a CPR for predicting independent walking 1-year after TSCI and it can assist frontline clinicians with clinical decision-making (e.g., time to surgery or rehabilitation plan), patient education and goal setting soon after injury. This tool is an example of adapting a validated CPR for independent walking into an easily accessible and usable web-based tool for use in clinical practice. This study may help inform how other CPRs can be adopted into clinical practice

Nationwide emergency department visits for pediatric traumatic spinal cord injury in the United States, 2016–2020

IntroductionTraumatic spinal cord injury (tSCI) is a debilitating neurological condition resulting in lifelong disability for many individuals. The primary objectives of our study were to describe national trends in incident emergency department (ED) visits for tSCI among children (less than 21 years) in the United States, and to determine the proportion of visits that resulted in immediate hospitalization each year, including stratified by age and sex. Secondary objectives were to examine associations between select characteristics and hospitalization following tSCI, as well as to assess sports-related tSCIs over time, including by individual sport and geographic region.MethodsWe used the Healthcare Cost and Utilization Project Nationwide Emergency Department Sample to identify ED visits among children between January 2016 and December 2020 for incident tSCI. Diagnosis codes were used to identify tSCI and sports-related injury etiologies. Census Bureau data were used to approximate annual rates of pediatric ED visits for tSCI per 100,000 children. Unconditional logistic regression modeling assessed whether select factors were associated with hospital admission.ResultsWe found that the annual ED visit rate for tSCI remained relatively stable between 2016 and 2020, with approximately 2,200 new all-cause pediatric ED visits for tSCI annually. Roughly 70% of ED visits for tSCI resulted in hospitalization; most ED visits for tSCI were by older children (15–20 years) and males, who were also more often admitted to the hospital. Notable secondary findings included: (a) compared with older children (15–20 years), younger children (10–14 years) were less likely to be hospitalized immediately following an ED visit for tSCI; (b) patient sex and race were not associated with hospital admission; and (c) American tackle football was the leading cause of sports-related ED visits for tSCI among children. Our findings also suggest that the proportion of sports-related tSCI ED visits may have increased in recent years.DiscussionFuture research should further examine trends in the underlying etiologies of pediatric tSCI, while assessing the effectiveness of new and existing interventions aimed at tSCI prevention

Impact of Trauma System Structure on Injury Outcomes : A Systematic Review and Meta-Analysis

The effectiveness of trauma systems in decreasing injury mortality and morbidity has been well demonstrated. However, little is known about which components contribute to their effectiveness. We aimed to systematically review the evidence of the impact of trauma system components on clinically important injury outcomes. We searched MEDLINE, EMBASE, Cochrane CENTRAL, and BIOSIS/Web of Knowledge, gray literature and trauma association Web sites to identify studies evaluating the association between at least one trauma system component and injury outcome. We calculated pooled effect estimates using inverse-variance random-effects models. We evaluated quality of evidence using GRADE criteria. We screened 15,974 records, retaining 41 studies for qualitative synthesis and 19 for meta-analysis. Two recommended trauma system components were associated with reduced odds of mortality: inclusive design (odds ratio [OR] = 0.72 [0.65-0.80]) and helicopter transport (OR = 0.70 [0.55-0.88]). Pre-Hospital Advanced Trauma Life Support was associated with a significant reduction in hospital days (mean difference [MD] = 5.7 [4.4-7.0]) but a nonsignificant reduction in mortality (OR = 0.78 [0.44-1.39]). Population density of surgeons was associated with a nonsignificant decrease in mortality (MD = 0.58 [-0.22 to 1.39]). Trauma system maturity was associated with a significant reduction in mortality (OR = 0.76 [0.68-0.85]). Quality of evidence was low or very low for mortality and healthcare utilization. This review offers low-quality evidence for the effectiveness of an inclusive design and trauma system maturity and very-low-quality evidence for helicopter transport in reducing injury mortality. Further research should evaluate other recommended components of trauma systems and non-fatal outcomes and explore the impact of system component interactions.Peer reviewe

Impact of Trauma System Structure on Injury Outcomes : A Systematic Review and Meta-Analysis

The effectiveness of trauma systems in decreasing injury mortality and morbidity has been well demonstrated. However, little is known about which components contribute to their effectiveness. We aimed to systematically review the evidence of the impact of trauma system components on clinically important injury outcomes. We searched MEDLINE, EMBASE, Cochrane CENTRAL, and BIOSIS/Web of Knowledge, gray literature and trauma association Web sites to identify studies evaluating the association between at least one trauma system component and injury outcome. We calculated pooled effect estimates using inverse-variance random-effects models. We evaluated quality of evidence using GRADE criteria. We screened 15,974 records, retaining 41 studies for qualitative synthesis and 19 for meta-analysis. Two recommended trauma system components were associated with reduced odds of mortality: inclusive design (odds ratio [OR] = 0.72 [0.65-0.80]) and helicopter transport (OR = 0.70 [0.55-0.88]). Pre-Hospital Advanced Trauma Life Support was associated with a significant reduction in hospital days (mean difference [MD] = 5.7 [4.4-7.0]) but a nonsignificant reduction in mortality (OR = 0.78 [0.44-1.39]). Population density of surgeons was associated with a nonsignificant decrease in mortality (MD = 0.58 [-0.22 to 1.39]). Trauma system maturity was associated with a significant reduction in mortality (OR = 0.76 [0.68-0.85]). Quality of evidence was low or very low for mortality and healthcare utilization. This review offers low-quality evidence for the effectiveness of an inclusive design and trauma system maturity and very-low-quality evidence for helicopter transport in reducing injury mortality. Further research should evaluate other recommended components of trauma systems and non-fatal outcomes and explore the impact of system component interactions.Peer reviewe

Pattern of neurological recovery in persons with an acute cervical spinal cord injury over the first 14 days post injury

IntroductionFollowing a traumatic spinal cord injury (SCI) it is critical to document the level and severity of injury. Neurological recovery occurs dynamically after injury and a baseline neurological exam offers a snapshot of the patient's impairment at that time. Understanding when this exam occurs in the recovery process is crucial for discussing prognosis and acute clinical trial enrollment. The objectives of this study were to: (1) describe the trajectory of motor recovery in persons with acute cervical SCI in the first 14 days post-injury; and (2) evaluate if the timing of the baseline neurological assessment in the first 14 days impacts the amount of motor recovery observed.MethodsData were obtained from the Rick Hansen Spinal Cord Injury Registry (RHSCIR) site in Vancouver and additional neurological data was extracted from medical charts. Participants with a cervical injury (C1–T1) who had a minimum of three exams (including a baseline and discharge exam) were included. Data on the upper-extremity motor score (UEMS), total motor score (TMS) and American Spinal Injury Association (ASIA) Impairment Scale (AIS) were included. A linear mixed-effect model with additional variables (AIS, level of injury, UEMS, time, time2, and TMS) was used to explore the pattern and amount of motor recovery over time.ResultsTrajectories of motor recovery in the first 14 days post-injury showed significant improvements in both TMS and UEMS for participants with AIS B, C, and D injuries, but was not different for high (C1–4) vs. low (C5–T1) cervical injuries or AIS A injuries. The timing of the baseline neurological examination significantly impacted the amount of motor recovery in participants with AIS B, C, and D injuries.DiscussionTiming of baseline neurological exams was significantly associated with the amount of motor recovery in cervical AIS B, C, and D injuries. Studies examining changes in neurological recovery should consider stratifying by severity and timing of the baseline exam to reduce bias amongst study cohorts. Future studies should validate these estimates for cervical AIS B, C, and D injuries to see if they can serve as an “adjustment factor” to control for differences in the timing of the baseline neurological exam

An international survey of the structure and process of care for traumatic spinal cord injury in acute and rehabilitation facilities : lessons learned from a pilot study

BACKGROUND: To describe the key findings and lessons learned from an international pilot study that surveyed spinal cord injury programs in acute and rehabilitation facilities to understand the status of spinal cord injury care. METHODS: An online survey with two questionnaires, a 74-item for acute care and a 51-item for rehabilitation, was used. A subset of survey items relevant to the themes of specialized care, timeliness, patient-centeredness, and evidence-based care were operationalized as structure or process indicators. Percentages of facilities reporting the structure or process to be present, and percentages of indicators met by each facility were calculated and reported separately for facilities from high-income countries (HIC) and from low and middle-income countries (LMIC) to identify "hard to meet" indicators defined as those met by less than two-thirds of facilities and to describe performance level. RESULTS: A total of 26 acute and 26 rehabilitation facilities from 25 countries participated in the study. The comparison of the facilities based on the country income level revealed three general observations: 1) some indicators were met equally well by both HIC and LMIC, such as 24-hour access to CT scanners in acute care and out-patient services at rehabilitation facilities; 2) some indicators were hard to meet for LMIC but not for HIC, such as having a multidisciplinary team for both acute and rehabilitation settings; and 3) some indicators were hard to meet by both HIC and LMIC, including having peer counselling programs. Variability was also observed for the same indicator between acute and rehabilitation facilities, and a wide range in the total number of indicators met among HIC facilities (acute 59-100%; rehabilitation 36-100%) and among LMIC facilities (acute: 41-82%; rehabilitation: 36-93%) was reported. CONCLUSIONS: Results from this international pilot study found that the participating acute and rehabilitation facilities on average adhered to 74% of the selected indicators, suggesting that the structure and processes to provide ideal traumatic spinal cord injury care were broadly available. Recruiting a representative sample of SCI facilities and incorporating regional attributes in future surveys will be helpful to examine factors affecting adherence to indicators.publishedVersionPeer reviewe