International Spinal Cord Injury Core Data Set (version 2.0)-including standardization of reporting.

STUDY DESIGN: The study design includes expert opinion, feedback, revisions and final consensus. OBJECTIVES: The objective of the study was to present the new knowledge obtained since the International Spinal Cord Injury (SCI) Core Data Set (Version 1.0) published in 2006, and describe the adjustments made in Version 2.0, including standardization of data reporting. SETTING: International. METHODS: Comments received from the SCI community were discussed in a working group (WG); suggestions from the WG were reviewed and revisions were made. All suggested revisions were considered, and a final version was circulated for final approval. RESULTS: The International SCI Core Data Set (Version 2.0) consists of 25 variables. Changes made to this version include the deletion of one variable 'Total Days Hospitalized' and addition of two variables 'Date of Rehabilitation Admission' and 'Date of Death.' The variable 'Injury Etiology' was extended with six non-traumatic categories, and corresponding 'Date of Injury' for non-traumatic cases, was defined as the date of first physician visit for symptoms related to spinal cord dysfunction. A category reflecting transgender was added. A response category was added to the variable on utilization of ventilatory assistance to document the use of continuous positive airway pressure for sleep apnea. Other clarifications were made to the text. The reporting of the pediatric SCI population was updated as age groups 0-5, 6-12, 13-14, 15-17 and 18-21. CONCLUSION: Collection of the core data set should be a basic requirement of all studies of SCI to facilitate accurate descriptions of patient populations and comparison of results across published studies from around the world.

Recommendations for spinal rehabilitation professionals regarding sexual education needs and preferences of people with spinal cord dysfunction: a mixed-methods study.

STUDY DESIGN: Mixed-methods study using comprehensive survey and semi-structured interviews. OBJECTIVES: Compare the experiences of sexual education during rehabilitation for people with non-traumatic spinal cord dysfunction (SCDys) and traumatic spinal cord injury (SCI), determine preferences for the delivery of this information and provide recommendations for spinal rehabilitation professionals. SETTING: Community, Australia. METHODS: Adults completed survey (traumatic SCI n=115; SCDys=39) or were interviewed (SCDys: n=21). Survey included questions regarding sexual education during rehabilitation, participant satisfaction with this and preferred modes for receiving such information. These themes were also explored during interviews. RESULTS: No difference between SCI and SCDys regarding satisfaction or preferred modes of presentation (all P>0.05). People with SCDys were less likely to report receiving sexuality education during rehabilitation (SCDys n=11, 30%; SCI n=61, 53%; P=0.03). Interviews suggested that this may be gendered, as only two women recalled receiving sexual education, whereas men often received this as part of continence management. Overall, only 18% were satisfied or very satisfied with sexual education and information received, and 36% were dissatisfied or very dissatisfied. Preferred modes for receiving sexuality information included sexuality counsellor (n=97), recommended internet sites (n=77), peer support workers (n=76), staff discussion (n=67), written information (n=67) and DVD (n=58). These preferences were confirmed during interviews, although women expressed a strong preference for written information sheets. CONCLUSION: There was very low satisfaction with sexuality education during rehabilitation. Our findings highlight the scope and directions for improving the sexual education and information given to people with both SCDys and SCI during rehabilitation.

Development of a comprehensive survey of sexuality issues including a self-report version of the International Spinal Cord Injury sexual function basic data sets.

STUDY DESIGN: Questionnaire development, validation and completion. OBJECTIVES: Develop comprehensive survey of sexuality issues including validated self-report versions of the International Spinal Cord Injury male sexual function and female sexual and reproductive function basic data sets (SR-iSCI-sexual function). SETTING: People with spinal cord damage (SCD) living in the community, Australia from August 2013 to June 2014. METHODS: An iterative process involving rehabilitation medicine clinicians, a nurse specialising in sexuality issues in SCD and people with SCD who developed a comprehensive survey that included the SR-iSCI-sexual function. Participants recruitment through spinal rehabilitation review clinic and community organisations that support people with SCD. RESULTS: Surveys completed by 154 people. Most were male (n=101, 65.6%). Respondents' median age was 50 years (interquartile range (IQR) 38-58), and they were a median of 10 years (IQR 4-20) after the onset of SCD. Sexual problems unrelated to SCD were reported by 12 (8%) respondents, and 114 (n=75.5%) reported sexual problems because of SCD. Orgasms were much less likely (χ(2)=13.1, P=0.006) to be normal in males (n=5, 5%) compared with females (n=11, 22%). Males had significantly worse (χ(2)=26.0, P=0.001) psychogenic genital functioning (normal n=9, 9%) than females (normal n=13, 26%) and worse (χ(2)=10.8, P=0.013) reflex genital functioning. Normal ejaculation was reported in only three (3%) men. Most (n=26, 52%) women reported reduced or absent menstruation pattern since SCD. CONCLUSION: The SR-iSCI-sexual function provides a useful tool for researchers and clinicians to collect information regarding patient-reported sexual functioning after SCD and to facilitate comparative studies.

A randomised control trial of an Internet-based cognitive behaviour treatment for mood disorder in adults with chronic spinal cord injury.

STUDY DESIGN: Prospective parallel waitlist randomised controlled trial. OBJECTIVES: Evaluate the feasibility and effectiveness of an Internet-based psychological intervention treating comorbid mood disorder in adults with spinal cord injury (SCI). Improved mood and satisfaction with life were primary outcomes. SETTING: Victoria, Australia. INTERVENTION: Electronic Personal Administration of Cognitive Therapy (ePACT). MEASURES: Depression, Anxiety and Stress Scale-Short Form (DASS21), Personal Well-being Index, Helplessness subscale of the Spinal Cord Lesion Emotional Well-being Scale v1 Australia, at each time point.Participant qualifying criteria:Adults (18-70 years), chronic SCI, attend SCI review clinic at Austin or Caulfield Hospital and score above normative threshold of the Depression, Anxiety and Stress Scale-Short Form (DASS21). METHODS: Forty-eight participants completed Time 2 post intervention (n=23) or time equivalent for waitlist control group (n=25) telephone interviews. The measures were repeated a third time (Time 3) for a small subgroup (n=12) at 6 months post intervention within the study implementation time frame. RESULTS: Univariate within group analyses revealed significant improvement in mood in the intervention group at Time 2: (lower depression (effect size (ES)=0.4), anxiety (ES=0.4) and stress (ES=0.3)) and higher satisfaction with life (ES=0.2). Waitlist control group improved in depression only (ES=0.3) by Time 2. Multilevel variance components analyses, although not as positive, were still encouraging. Improvement in mood symptoms was maintained in the small group reinterviewed at Time 3. CONCLUSION: Although Internet-based interventions for mental health issues in SCI not a solution for all, our results indicate that they are a potentially valuable addition to the currently available options.

Time-series analysis of the barriers for admission into a spinal rehabilitation unit.

STUDY DESIGN: This is a prospective open-cohort case series. OBJECTIVES: The objective of this study was to assess changes over time in the duration of key acute hospital process barriers for patients with spinal cord damage (SCD) from admission until transfer into spinal rehabilitation unit (SRU) or other destinations. SETTING: The study was conducted in Acute hospitals, Victoria, Australia (2006-2013). METHODS: Duration of the following discrete sequential processes was measured: acute hospital admission until referral to SRU, referral until SRU assessment, SRU assessment until ready for SRU transfer and ready for transfer until SRU admission. Time-series analysis was performed using a generalised additive model (GAM). Seasonality of non-traumatic spinal cord dysfunction (SCDys) was examined. RESULTS: GAM analysis shows that the waiting time for admission into SRU was significantly (P<0.001) longer for patients who were female, who had tetraplegia, who were motor complete, had a pelvic pressure ulcer and who were referred from another health network. Age had a non-linear effect on the duration of waiting for transfer from acute hospital to SRU and both the acute hospital and SRU length of stay (LOS). The duration patients spent waiting for SRU admission increased over the study period. There was an increase in the number of referrals over the study period and an increase in the number of patients accepted but not admitted into the SRU. There was no notable seasonal influence on the referral of patients with SCDys. CONCLUSIONS: Time-series analysis provides additional insights into changes in the waiting times for SRU admission and the LOS in hospital for patients with SCD.

Improving discharge planning communication between hospitals and patients.

BACKGROUND: A potential barrier to patient discharge from hospital is communication problems between the treating team and the patient or family regarding discharge planning. AIM: To determine if a bedside 'Leaving Hospital Information Sheet' increases patient and family's knowledge of discharge date and destination and the name of the key clinician primarily responsible for team-patient communication. METHODS: This article is a 'before-after' study of patients, their families and the interdisciplinary ward-based clinical team. Outcomes assessed pre-implementation and post-implementation of a bedside 'Leaving Hospital Information Sheet' containing discharge information for patients and families. Patients and families were asked if they knew the key clinician for team-patient communication and the proposed discharge date and discharge destination. Responses were compared with those set by the team. Staff were surveyed regarding their perceptions of patient awareness of discharge plans and the benefit of the 'Leaving Hospital Information Sheet'. RESULTS: Significant improvement occurred regarding patients' knowledge of their key clinician for team-patient communication (31% vs 75%; P = 0.0001), correctly identifying who they were (47% vs 79%; P = 0.02), and correctly reporting their anticipated discharge date (54% vs 86%; P = 0.004). There was significant improvement in the family's knowledge of the anticipated discharge date (78% vs 96%; P = 0.04). Staff reported the 'Leaving Hospital Information Sheet' assisted with communication regarding anticipated discharge date and destination (very helpful n = 11, 39%; a little bit helpful n = 11, 39%). CONCLUSIONS: A bedside 'Leaving Hospital Information Sheet' can potentially improve communication between patients, families and their treating team.

Prevalence of mood disturbance in Australian adults with chronic spinal cord injury.

BACKGROUND: There is little understanding of the prevalence of mental health issues in people with spinal cord injury (SCI) after they leave rehabilitation or how mental health issues can alter over time. AIM: The aims were to (i) determine the prevalence of mood disturbance in adults with chronic SCI living in the community, (ii) ascertain whether the prevalence of mood disturbance had changed since a previous study in 2004-2005 and (iii) establish whether people with chronic SCI remain vulnerable to mood disturbance, irrespective of time since injury. METHODS: Prospective, open-cohort case series. Participants were 573 community-based adults with a chronic SCI. The depression, anxiety and stress scale - short version was used. Analyses included simple descriptors, Chi-squared and repeated measures t-tests. RESULTS: Nearly half of participants (n = 263/573; 46%) reported symptoms indicating mood disturbance, which was similar to the level found in the previous study. While the presence of mood disturbance persisted in 23% of adults (n = 26) and 46 (41%) were in the 'below threshold' category, just over a third of the adults who participated in both studies (n = 111) experienced a change (n = 21, 19% mood disturbance resolved and n = 18, 16% mood disturbance developed). CONCLUSION: Both resilience and change are common. At no time after SCI is the risk of mental health problems considered reduced or even stable. These results highlight the importance of regular mental health reviews even in those who have previously displayed good resilience.

Prospective study of barriers to discharge from a spinal cord injury rehabilitation unit.

STUDY DESIGN: Prospective open cohort case series of consecutive patients admitted with spinal cord damage to a spinal rehabilitation unit (SRU) between 1 January 2008 and 31 July 2013. OBJECTIVES: Measure the prevalence of barriers to discharge, their reasons and resulting additional unnecessary days in hospital. SETTING: SRU, Victoria, Australia. METHODS: Consecutive SRU admissions had prospective documentation of key clinical and demographic characteristics, the occurrence of any discharge barrier, the cause(s) and duration of unnecessary hospitalisation. RESULTS: There were 235 patients in the study; 138 (58.7%) were male and the median age was 63 years. Eighty-six (36.6%) patients had a discharge barrier. The most common reasons for a discharge barrier were: waiting for approval for long-term and supported care or services, residential care, home modifications, family deliberations regarding discharge planning and the provision of equipment necessary for discharge. The reasons accounting for the greatest number of additional hospital days were: home modifications, residential care, equipment necessary for discharge, waiting for approval for long-term and supported care or services and accommodation for people unable to return to their previous residence without readily available alternatives. Over the study period 17.5% (3176/18,184) of all bed-days were occupied by patients deemed to be clinically ready for discharge from the SRU but who had a discharge barrier. CONCLUSIONS: Barriers to discharge from rehabilitation for patients with spinal cord damage are common, substantial, and represent an important opportunity for health systems improvement.

Reducing process barriers in acute hospital for spinal cord damage patients needing spinal rehabilitation unit admission.

STUDY DESIGN: Prospective open cohort case series. OBJECTIVES: To identify opportunities for improvement by recording duration of key processes from acute hospital admission until spinal rehabilitation unit (SRU) admission. SETTING: SRU, Victoria, Australia. METHODS: Consecutive referrals of patients with recent spinal cord damage had prospective documentation of the key clinical and demographic characteristics and duration (days) of the following sequential discrete processes: acute hospital admission until referral to SRU, referral until SRU assessment, SRU assessment until ready for transfer to SRU and ready for transfer until SRU admission. RESULTS: A total of 347 patients were referred with median age (interquartile range (IQR)) of 65 (52-76) years. Most patients were male (n=203, 58.5%), had paraplegia (n=267, 77%) and an aetiology due to spinal cord myelopathy (n=280, 80.7%). There was a median of 12 days (IQR 6-20) from acute hospital admission until referral, a median of 1 day (IQR 0-2) from referral till assessment, a median of 0 (IQR 0-3.5) days from assessment till deemed ready and a median of 7 (IQR 2-20) days from deemed ready until transfer to SRU. Overall, patients spent 34.2% (4951/14 478 days) of their acute hospital length of stay waiting for a SRU bed. CONCLUSIONS: There are opportunities to improve the efficiency of the acute hospital journey for patients referred to a SRU. The biggest opportunities exist for reducing the time from acute hospital admission till referral to SRU and the time from deemed ready for transfer to SRU till admission.

Rehabilitation outcomes following infections causing spinal cord myelopathy.

STUDY DESIGN: Retrospective, open-cohort, consecutive case series. OBJECTIVE: To describe the demographic characteristics, clinical features and outcomes in patients undergoing initial in-patient rehabilitation after an infectious cause of spinal cord myelopathy. SETTING: Spinal Rehabilitation Unit, Melbourne, Victoria, Australia. Admissions between 1 January 1995 and 31 December 2010. METHODS: The following data were recorded: aetiology of spinal cord infection, risk factors, rehabilitation length of stay (LOS), level of injury (paraplegia vs tetraplegia), complications related to spinal cord damage and discharge destination. The American Spinal Injury Association (ASIA) Impairment Scale (AIS) and functional independence measure (FIM) were assessed at admission and at discharge. RESULTS: Fifty-one patients were admitted (men=32, 62.7%) with a median age of 65 years (interquartile range (IQR) 52-72, range 22-89). On admission, 37 (73%) had paraplegic level of injury and most patients (n=46, 90%) had an incomplete grade of spinal damage. Infections were most commonly bacterial (n=47, 92%); the other causes were viral (n=3, 6%) and tuberculosis (n=1, 2%). The median LOS was 106 days (IQR 65-135). The most common complications were pain (n=47, 92%), urinary tract infection (n=27, 53%), spasticity (n=25, 49%) and pressure ulcer during acute hospital admission (n=19, 37%). By the time of discharge from rehabilitation, patients typically showed a significant change in their AIS grade of spinal damage (P<0.001). They also showed significant improvement (P<0.001) in their FIM motor score (at admission: median=27, IQR 20-34; at discharge: median=66, IQR 41-75). CONCLUSION: Most patients returned home with a good level of functioning with respect to mobility, bladder and bowel status, and their disability improved significantly.

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.

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.

International survey of perceived barriers to admission and discharge from spinal cord injury rehabilitation units.

STUDY DESIGN: Survey. OBJECTIVES: To describe and compare perceived barriers with patient flow in spinal rehabilitation units (SRUs). SETTING: International. Ten SRUs (Australia, Canada, India, Ireland, Italy, Netherlands, Pakistan, Switzerland, UK and USA) that admit both traumatic and non-traumatic spinal cord injury patients. METHODS: Survey completed between December 2010 and February 2013 on perception of barriers for admission into and discharge from SRUs. Opinion was sought from the participants regarding the utility of collecting data on the timeliness of access to SRUs and occurrence of discharge barriers for benchmarking and quality improvement purposes. RESULTS: The perceived barriers in accessing SRUs ranged from no access problem to a severe access problem (no access problems n=3; minor access problems n=3; moderate access problems n=2; severe access problem n=1 and extreme n=1). Most units (n=9/10) agreed that collecting data on timeliness of access to SRUs for acute hospital patients may help improve patient outcomes and health system processes by providing information for benchmarking and quality improvement purposes. All units reported perceived barriers to discharge from SRUs. Compared with admission barriers, a greater perception of barriers to discharge was reported (minor problem n=3; moderate problem n=3; severe problem n=3; and extreme n=1). All units agreed that collecting data on barriers to discharge from SRU may help improve patient outcomes and system processes. CONCLUSIONS: Perceived barriers to patient flow in SRUs are reported in many countries. Projects to identify and minimise the occurrence and impact of admission and discharge barriers could increase access to rehabilitation and improve the rehabilitation outcomes for patients.

Reducing the length of stay for acute hospital patients needing admission into inpatient rehabilitation: a multicentre study of process barriers.

BACKGROUND: Patient flow is a major problem in hospitals. Delays in accessing inpatient rehabilitation have not been well studied. AIMS: Measure the time taken for key processes in the patient journey from acute hospital admission through to inpatient rehabilitation admission in order to identify opportunities for improvement. METHODS: Retrospective open cohort study. All patients admitted over 8- and 10-month periods during 2008 into two inpatient rehabilitation units in Melbourne, Australia. Main outcome measures were the duration of the following key processes: acute hospital admission until referral for rehabilitation, referral until assessment by the rehabilitation service, assessment until deemed ready for transfer to rehabilitation, ready for transfer until rehabilitation admission. RESULTS: Three hundred and sixty patients were in the study sample (females = 186; 51.7%); mean age = 58.4 (standard deviation = 15.0) years. There was a median of 7 (interquartile range [IQR] 4-13) days from acute hospital admission till referral for rehabilitation, a median of 1 (IQR 0-1) day from referral till assessment, a median of 0 (IQR 0-2) days from assessment till deemed ready for transfer and a median of 1 (IQR 0-3) day from ready till admission into rehabilitation. Overall, patients spent 12.0% (804/6682) of their acute hospital admission waiting for a rehabilitation bed. CONCLUSIONS: There are opportunities to improve the efficiency of key processes in the acute hospital journey for patients subsequently admitted to inpatient rehabilitation; in particular, reducing the time from acute hospital admission till referral for rehabilitation and from being deemed ready for transfer to rehabilitation till admission.

Survival following spinal cord infarction.

STUDY DESIGN: Retrospective open cohort. OBJECTIVES: To calculate the survival of patients with spinal cord infarction and to compare the cause of death in patients with different mechanisms of ischaemic injury. SETTING: Spinal Rehabilitation Unit, Melbourne, Victoria, Australia. METHODS: Consecutive admissions between 1 January 1995 and 31 December 2008 with recent onset of spinal cord infarction. Linkage to the Registry of Births, Deaths and Marriages (Victoria) was used to determine survival following discharge from in-patient rehabilitation and cause of death. RESULTS: A total of 44 patients were admitted (males=26, 59%), with a median age of 72 years (interquartile range (IQR) 62-79). One patient died during their in-patient rehabilitation programme. In all, 14 patients (n=14/44; 33%) died during the follow-up period. The median survival after diagnosis was 56 months (IQR 28-85) and after discharge from in-patient rehabilitation was 46 months (IQR 25-74). The 1- and 5-year mortality rates were 7.0% (n=3/43; 95% confidence interval (CI)=2.4-18.6%) and 20.9% (n=9/43; 95% CI=11.4-35.2%). There was no statistically significant difference in survival between patients with the different aetiologies of spinal cord infarction (other vs idiopathic: χ(2)=0.6, P=0.7; other vs vascular: χ(2)=1.9, P=0.3). There was no relationship between survival and gender (χ(2)=0.2, P=0.6), age (χ(2)=3.0, P=0.08), level of injury (χ(2)=0.0, P=1) or American Spinal Cord Society Impairment Scale grade of spinal cord injury (χ(2)=0.02, P=0.9). CONCLUSION: Patients with spinal cord infarction appear to have a fair survival after discharge from in-patient rehabilitation, not withstanding the occurrence of risk factors of vascular disease in many patients.

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.

Prevalence of non-traumatic spinal cord injury in Victoria, Australia.

STUDY DESIGN: Forecasting using population modelling. OBJECTIVES: To determine the prevalence of non-traumatic spinal cord injury (NTSCI) on 30 June 2010. SETTING: Victoria, Australia. METHODS: Modelling used the following data: incidence of NTSCI based on state-wide, population-based, health-administration database of hospital admissions; state and national population profiles and life tables; levels of NTSCI based on national rehabilitation outcomes data; and life expectancy for persons with SCI. RESULTS: The total population prevalence rate was 367.2 per million, whereas the prevalence in adults aged 16 years and older was estimated to be 2027, equivalent to a population prevalence rate of 455 per million persons. There were more males (1097) with NTSCI (prevalence rate males 197.8 per million population; females 169.1 per million population) and the prevalence was much higher among those with paraplegia (prevalence rate 269.3 per million compared to 97.8 per million with tetraplegia) and incomplete NTSCI. Ventilator dependency (prevalence rate 1.6 per million population) and paediatric NTSCI (prevalence rate 6 per million population ≤ 15 years old) were extremely rare. CONCLUSION: We have reported a method for calculating an estimate of the prevalence of NTSCI that provides information that will be vital to optimise health care planning for this group of highly disabled members of society. It is suggested that refinements to the modelling methods are required to enhance its reliability. Future projects should be directed at refining the mortality ratios and performing cohort survival studies.

Retrospective case series of outcomes following spinal cord infarction.

BACKGROUND AND PURPOSE: There are very few studies of functional and rehabilitation outcomes in patients with spinal cord injury (SCI) owing to infarction. METHODS: Retrospective chart review of consecutive admissions to a tertiary medical unit specializing in SCI rehabilitation, Melbourne, Australia. All admissions between 1 January 1995 and 31 December 2008 with a recent onset of SCI owing to ischaemia were included. Outcome measures included the following: demographic characteristics, American Spinal Injury Association (ASIA) Impairment Scale (AIS), length of stay (LOS), medical complications, accommodation, support services, continence, mobility and Functional Independence Measure (FIM) motor scores. Outcome measures recorded at admission, discharge and at 12 months post discharge. RESULTS: Forty-four patients were admitted for rehabilitation (men = 26, 59%), with a median age of 72 years (interquartile range [IQR], 62-79). On admission, 41 (93%) patients had paraplegia. The majority of patients (n = 33, 75%) had an incomplete SCI. Aetiology was vascular in 19 (43%) patients, idiopathic in 11 (25%) and other in 14 (33%). The median LOS in rehabilitation was 85 days (IQR, 24-129). The most common complications were pain (n = 34, 77%), urinary tract infection (n = 25, 57%), spasticity (n = 12, 27%), cardiac failure (n = 11, 25%) and pneumonia (n = 9, 20%). At rehabilitation discharge most patients (n = 35, 80%) had no change in their AIS grade. Despite this, the FIM motor subscale on admission (median = 28; IQR, 21-34) had significantly improved (P < 0.0000) by discharge (median = 66; IQR 42-78). CONCLUSION: Despite their comorbidities and limited change in AIS, these patients had significant improvement in functional abilities during impatient rehabilitation.

Interaction of HLA-DRB1*03 and smoking for the development of anti-Jo-1 antibodies in adult idiopathic inflammatory myopathies: a European-wide case study.

OBJECTIVES: HLA-DRB1*03 is strongly associated with anti-Jo-1-positive idiopathic inflammatory myopathies (IIM) and there is now increasing evidence that Jo-1 antigen is preferentially expressed in lung tissue. This study examined whether smoking was associated with the development of anti-Jo-1 antibodies in HLA-DRB1*03-positive IIM. METHODS: IIM cases were selected with concurrent information regarding HLA-DRB1 status, smoking history and anti-Jo-1 antibody status. DNA was genotyped at DRB1 using a commercial sequence-specific oligonucleotide kit. Anti-Jo-1 antibody status was established using a line blot assay or immunoprecipitation. RESULTS: 557 Caucasian IIM patients were recruited from Hungary (181), UK (99), Sweden (94) and Czech Republic (183). Smoking frequency was increased in anti-Jo-1-positive IIM cases, and reached statistical significance in Hungarian IIM (45% Jo-1-positive vs 17% Jo-1-negative, OR 3.94, 95% CI 1.53 to 9.89, p<0.0001). A strong association between HLA-DRB1*03 and anti-Jo-1 status was observed across all four cohorts (DRB1*03 frequency: 74% Jo-1-positive vs 35% Jo-1-negative, OR 5.55, 95% CI 3.42 to 9.14, p<0.0001). The frequency of HLA-DRB1*03 was increased in smokers. The frequency of anti-Jo-1 was increased in DRB1*03-positive smokers vs DRB1*03-negative non-smokers (42% vs 8%, OR 7.75, 95% CI 4.21 to 14.28, p<0.0001) and DRB1*03-positive non-smokers (42% vs 31%, p=0.08). In DRB1*03-negative patients, anti-Jo-1 status between smokers and non-smokers was not significantly different. No significant interaction was noted between smoking and DRB1*03 status using anti-Jo-1 as the outcome measure. CONCLUSION: Smoking appears to be associated with an increased risk of possession of anti-Jo-1 in HLA-DRB1*03-positive IIM cases. The authors hypothesise that an interaction between HLA-DRB1*03 and smoking may prime the development of anti-Jo-1 antibodies.

Retrospective study of rehabilitation outcomes following spinal cord injury due to tumour.

STUDY DESIGN: Retrospective study. OBJECTIVES: To examine the rehabilitation outcomes for patients with spinal cord injury (SCI) due to tumour, with a focus on the impact of pain on disability and length of stay (LOS). SETTING: Public hospital inpatient spinal rehabilitation unit, Melbourne, Australia. METHODS: Retrospective open-cohort case series of consecutive patients admitted between 1/7/1996 and 30/6/2008 with a diagnosis of recent onset tumour causing SCI. RESULTS: In all 108 patients were admitted, of whom 62% (n=67) were male. The median age was 61.5 years (interquartile range (IQR) 53.6-74). Most patients had paraplegia (n=97, 89.8%) and a metastatic tumour (n=71, 65.7%) causing their SCI. For patients with a primary tumour the Rasch motor functional independence measure (FIM) gain between admission and discharge (median 17, IQR 4-23) was significantly greater (P=0.006) than for those with secondary tumour (median 7, IQR from -4 to 15). Pain was present in 52% of patients and had a significant adverse influence on the rehabilitation process, with FIM motor efficiencies of 0.09 in patients with documented pain compared with 0.39 in patients without pain (P=0.01). Patients with pain had significantly prolonged median LOS of 56 days (IQR 32.5-84.5) compared with 42 days (IQR 20.5-72.5, P=0.03) without pain. CONCLUSION: Patients with SCI due to tumour have the potential to benefit from a focused, specialised SCI rehabilitation programme to optimise their outcomes. Careful patient selection, modifying the focus of team goals and a close relationship with treating oncologists and palliative care teams is essential.