Peter W New

Standardization of data analysis and reporting of results from the International Spinal Cord Injury Core Data Set

Objectives:The objective of this study was to provide guidelines for reporting results using the International Spinal Cord Injury (SCI) Core Data Set.Setting:International.Methods:A committee was created on request of the chair of the Executive Committee for the International SCI Data Set committees. The committee developed a draft consisting of set of recommendations, which were then reviewed and approved by the entire Executive Committee.Results:Age at injury is recommended as reported by the mean, s.d., median and range. When grouped, 15-year increments are recommended as follows: 0–15, 16–30, 31–45, 46–60, 61–75 and 76+ years. For pediatric SCI, 0–5, 6–12, 13–15, 16–21 years are recommended. Time since injury should be reported by mean, s.d., median and range. The following intervals are recommended: <1 year, 1–5, 6–10, 11–15 years, and 5-year increments thereafter. Calendar time (years during which the study is conducted) is recommended grouped by either 5 or 10-year increments with years ending in 4 or 9. For ‘length of stay’, the mean and s.d., as well as the median is recommended for report. Severity of injury is under ordinary circumstances recommended, reported in five categories: C1–4 American Spinal Injury Association Impairment Scale grade (AIS) A, B or C; C5–8 AIS A, B or C; T1–S5 AIS A, B, or C; AIS D at any injury level; and ventilator dependent at any injury level or AIS grade.Conclusion:It is expected that these recommendations can facilitate a more uniform reporting of the very basic core data on SCI. This will facilitate comparison between different SCI studies.

Incidence of non-traumatic spinal cord injury in Victoria, Australia: a population-based study and literature review

Study design:Data extraction from a state-wide, population-based, health-administration database of hospital admissions.Objective:To determine the incidence of non-traumatic spinal cord injury (NTSCI).Setting:Victoria, Australia.Methods:All patients admitted to hospital with a new onset of NTSCI, or who developed NTSCI after hospitalization, between 1 July 2000 and 30 June 2006, were identified using a population-based database. Age and gender of NTSCI patients were recorded.Results:The number of adults aged 15 years and older with NTSCI in each of the 12-month periods was 82, 111, 96, 108, 133 and 101. The average age-adjusted incidence rate of NTSCI in adults was 26.3 cases per million per year. There was no statistically significant increase in the age-adjusted incidence of NTSCI over the study period (Spearmans ρ=0.35, P=0.5). The incidence of NTSCI was significantly greater than the reported incidence for traumatic spinal cord injury (χ 2 1=19.5, P<0.0000). There was a very strong correlation between age and the incidence of NTSCI, for both men (Spearmans ρ=1, P<0.0000) and women (Spearmans ρ=0.98, P=0.0000). Men had a statistically significantly (χ 2 1=13.1, P=0.000) higher incidence of NTSCI (30.5 million adults per year) compared to women (22.9 million adults per year). The average incidence of NTSCI in children <15 years was 0.7 cases per million per year.Conclusion:NTSCI is strongly correlated with age and is more common than traumatic spinal cord injury. The method used in this study to calculate the incidence of NTSCI can be used to monitor the anticipated increase in the incidence of NTSCI in the years ahead, and can be used to in comparative studies.

Spinal Cord Injury Management and Rehabilitation: Highlights and Shortcomings From the 2005 Earthquake in Pakistan

Recent natural disasters have highlighted the lack of planning for rehabilitation and disability management in emergencies. A review of our experience with spinal cord injury (SCI) after the Pakistan earthquake of 2005, plus a review of other literature about SCI after natural disasters, shows that large numbers of people will incur SCIs in such disasters. The epidemiology of SCI after earthquakes has not been well studied and may vary with location, severity of the disaster, available resources, the expertise of the health care providers, and cultural issues. A lack of preparedness means that evacuation protocols, clinician training, dedicated acute management and rehabilitation facilities, specialist equipment, and supplies are not in place. The dearth of rehabilitation medicine specialists in developing regions further complicates the issue, as does the lack of national spinal cord registries. In our 3 makeshift SCI units, however, which are staffed by specialists and residents in rehabilitation medicine, there were no deaths, few complications, and a successful discharge for most patients. Technical concerns include air evacuation, early spinal fixation, aggressive management to optimize bowel and bladder care, and provision of appropriate skin care. Discharge planning requires substantial external support because SCI victims must often return to devastated communities and face changed vocational and social possibilities. Successful rehabilitation of victims of the Pakistan earthquake has important implications. The experience suggests that dedicated SCI centers are essential after a natural disaster. Furthermore, government and aid agency disaster planners are advised to consult with rehabilitation specialists experienced in SCI medicine in planning for the inevitable large number of people who will have disabilities after a natural disaster.

Nontraumatic spinal cord injury rehabilitation: Pressure ulcer patterns, prediction, and impact

OBJECTIVE To investigate the characteristics, predictors, and consequences of pressure ulcers in patients with nontraumatic spinal cord injury (SCI). DESIGN Retrospective, 3-year, case series. SETTING Tertiary medical unit specializing in SCI rehabilitation. PARTICIPANTS Consecutive sample of 134 adult inpatient referrals with nontraumatic SCI. Patients requiring initial rehabilitation or readmission were included. INTERVENTION Chart review. MAIN OUTCOME MEASURES Primary outcome measures were presence of pressure ulcers on admission to rehabilitation, incidence of new pressure ulcers developing during hospitalization, and any complications attributable to pressure ulcers during inpatient rehabilitation. Secondary objectives were to examine the predictability of risk factors for pressure ulcers, to assess the usefulness of a model previously developed for predicting pressure ulcers in patients with chronic SCI, and to estimate the effect of pressure ulcers on rehabilitation of nontraumatic SCI. RESULTS Prevalence of pressure ulcers among admissions was 31.3% (n=42). Only 2.2% (n=3) of patients developed a new pressure ulcer after admission. The length of stay (LOS) of patients admitted with a pressure ulcer was significantly longer than that of those without a pressure ulcer (geometric mean, 62.3 d for pressure ulcer vs 28.2 d for no pressure ulcer, P=.0001). Many previously identified risk factors for pressure ulcers in SCI patients did not apply to our nontraumatic SCI patients. It is estimated that the inpatient LOS for those patients with a significant pressure ulcer was increased by 42 days. CONCLUSIONS Pressure ulcers are a common complication for people with nontraumatic SCI who are admitted for rehabilitation, and they have a significant impact on LOS.

Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository

Study design:Literature review.Objectives:Globally map non-traumatic spinal cord injury (NTSCI) incidence, prevalence, survival, level of injury and aetiology. Propose a research framework for NTSCI prevention and launch a repository of NTSCI data.Setting:Initiative of the International Spinal Cord Society Prevention Committee.Methods:Literature search of Medline and Embase (1959–June 2011). Relevant articles in any language regarding adults with NTSCI were included. Stratification of information about incidence and prevalence into green/yellow/orange/red data quality ‘zones’ and comparisons between World Health Organisation (WHO) regions and countries.Results:Three hundred and seventy-seven abstracts reviewed—45 of these from 24 countries in 12 of the 21 WHO global regions had relevant information. Only one publication had survival data. Prevalence data for NTSCI existed for only two countries, India (prevalence of 2 310/million population, Kashmir region) and Canada (prevalence of 1 120/million population). The incidence rates for WHO regions were: Asia Pacific, high income 20/million population/year; Australasia (26/million population/year); Western Europe median of 6/million population/year; North America, high income median 76/million population/year (based on poor-quality studies); and Oceania 9/million population/year. Developed countries tended to have a higher proportion of cases with degenerative conditions and tumours. Developing countries, in comparison, tended to have a higher proportion of infections, particularly tuberculosis and HIV, although a number also reported tumours as a major cause.Conclusions:Insufficient survival, prevalence and incidence data are a predominant finding of this review. The piecemeal approach to epidemiological reporting of NTSCI, particularly failing to include sound regional population denominators, has exhausted its utility. Minimum data collection standards are required.

Critical Appraisal and Review of the Rankin Scale and Its Derivatives

Background and Purpose:Efforts to reduce stroke burden require accurate assessment of outcomes in order to compare treatments. The Rankin Scale and its derivatives, the Modified Rankin Scale and the Oxford Handicap Scale, taken together, are among the most common outcome measures that have been used in stroke research. The aim of this study was to perform a critical appraisal of the clinimetric properties of these scales. It was also planned to review the use of these scales in a selection of articles to illustrate concerns raised by the critical appraisal. Summary of Review: A literature search was performed using electronic databases to locate relevant articles about the reviewed scales. The scales were appraised using a structured format regarding the following properties: purpose, development, presentation, language, method of administration, content validity, face validity, feasibility, construct validity, reliability, responsiveness, and generalizability. There are concerns in each of the appraised areas regarding the clinimetric properties of these scales. Conclusion: Further work is needed to improve the clinimetric properties of the reviewed scales to ensure that they are more useful tools in determining the outcome of stroke. Alternatively, a newer global outcome scale with improved clinimetric properties may be a better option for future stroke research.

International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury

Study design:Multifaceted: extensive discussions at workshop and conference presentations, survey of experts and feedback.Objectives:Present the background, purpose and development of the International Spinal Cord Injury (SCI) Data Sets for Non-Traumatic SCI (NTSCI), including a hierarchical classification of aetiology.Setting:International.Methods:Consultation via e-mail, presentations and discussions at ISCoS conferences (2006–2009), and workshop (1 September 2008). The consultation processes aimed to: (1) clarify aspects of the classification structure, (2) determine placement of certain aetiologies and identify important missing causes of NTSCI and (3) resolve coding issues and refine definitions. Every effort was made to consider feedback and suggestions from participants.Results:The International Data Sets for NTSCI includes basic and an extended versions. The extended data set includes a two-axis classification system for the causes of NTSCI. Axis 1 consists of a five-level, two-tier (congenital-genetic and acquired) hierarchy that allows for increasing detail to specify the aetiology. Axis 2 uses the International Statistical Classification of Diseases (ICD) and Related Health Problems for coding the initiating diseases(s) that may have triggered the events that resulted in the axis 1 diagnosis, where appropriate. Additional items cover the timeframe of onset of NTSCI symptoms and presence of iatrogenicity. Complete instructions for data collection, data sheet and training cases are available at the websites of ISCoS (http://www.iscos.org.uk) and ASIA (http://www.asia-spinalinjury.org).Conclusions:The data sets should facilitate comparative research involving NTSCI participants, especially epidemiological studies and prevention projects. Further work is anticipated to refine the data sets, particularly regarding iatrogenicity.

A population-based study comparing traumatic spinal cord injury and non-traumatic spinal cord injury using a national rehabilitation database

Study design:A limitation of many studies of non-traumatic spinal cord injury (NT-SCI) and traumatic spinal cord injury (T-SCI) is potential lack of generalizability because of selection bias. An open cohort study using a national rehabilitation database was planned to address this.Objective:To compare the demographic characteristics and outcomes between NT-SCI and T-SCI patients.Setting:Rehabilitation hospitals in Australia.Methods:The Australasian Rehabilitation Outcomes Centre maintains a national database of information on in-patients admitted to almost all (130/145 as at 2006) public and private rehabilitation hospitals in Australia. It collects a range of demographic and clinical outcomes. Patients were included if they were discharged between 1 January 2002 and 31 December 2006. Patients were excluded if they were admitted for <7 days, only for assessment or were a readmission.Results:There were 3610 patients included (NT-SCI, n=2241, 62.1%; T-SCI, n=1361, 37.7%). There were numerous significant differences between NT-SCI and T-SCI patients. NT-SCI patients were generally older (median age NT-SCI 67 years vs T-SCI 46 years, P=0.000), less likely to be male (male NT-SCI 52.5% vs T-SCI 71.6%, P=0.000) and had a shorter length of stay (median NT-SCI 21 days vs T-SCI 44 days, P=0.000). NT-SCI patients were also less disabled than T-SCI patients, having higher Functional Independence Measure motor subscale score on admission (median NT-SCI 53 vs T-SCI 38, P=0.000) and discharge (median NT-SCI 76 vs T-SCI 74, P=0.000).Conclusion:Previous demographic studies of NT-SCI and T-SCI patients are similar to our population-based results. More population-based research in SCI is required.

International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury

Study design:Survey.Objectives:Describe and compare the organisation and delivery of rehabilitation services and systems of care for patients with spinal cord injury (SCI).Setting:International. Nine spinal rehabilitation units that manage traumatic SCI and non-traumatic SCI (NTSCI) patients.Methods:Survey based on clinical expertise and literature review. Completed between November 2010 and April 2011.Results:All units reported public/government funding. Additional funding sources included compensation schemes, private insurance and self funding. Six units had formal attachment to an acute SCI unit. Five units (Italy, Ireland, India, Pakistan and Switzerland) provided a national service; two units (the Netherlands and USA) provided regional and two units (Australia and Canada) provided state/provincial services. The median number of SCI rehabilitation beds was 23 (interquartile range=16–30). All units admitted both traumatic SCI and NTSCI patients. The median proportion of patients admitted who had traumatic SCI was 45% (IQR 20–48%) and 40% (IQR 30–42%) had NTSCI. The rehabilitation team in all centres determined patient readiness for discharge. There was great variability between units in the availability of SCI speciality services, ancillary services and staff/patient ratios.Conclusion:There was a wide range of differences in the organisation, systems of care and services available for patients with SCI in rehabilitation units in different countries. Understanding these differences is important when comparing patient outcomes from different settings. A standardised collection of these system variables should be considered as part of future studies and could be included in the ISCoS data set project.

Comparison of depression, anxiety and stress in persons with traumatic and non-traumatic post-acute spinal cord injury.

Study design:Community cross-sectional self-report survey of adults with spinal cord injury (SCI).Objectives:The aim of this study was to examine the likelihood of depression, anxiety and stress in adults with non-traumatic SCI (NT-SCI) compared with adults with traumatic SCI (T-SCI).Setting:Victoria, Australia. Adults (N=443; NT-SCI n=62) living in the community and attending specialist SCI rehabilitation clinics.Methods:Participants completed a self-report survey by internet, telephone or hard copy. Items included demographic and injury-related characteristics and the short form Depression, Anxiety and Stress Scale (DASS-21).Results:Persons with NT-SCI were significantly more likely to be female (P<0.05), older (P<0.001) and have lower-level incomplete injuries (P<0.001). The probability of depression, anxiety or stress in respondents with NT-SCI did not differ from persons with T-SCI (P>0.05). Overall, the prevalence of adverse mental health problems defined by scoring above DASS-21 cutoffs, were depression 37%, anxiety 30%, and clinically significant stress 25%.Conclusions:This study examined multiple mental health outcomes after NT-SCI in Australia. This study provides some evidence that the results of studies of depression, anxiety or stress in persons with T-SCI can be generalised to those with NT-SCI in the post-acute phase. NT-SCI patients are also at substantial risk of poor mental health outcomes. General demographic and injury-related characteristics do not seem to be important factors associated with the mental health of adults with SCI whether the SCI is traumatic or non-traumatic in origin.