The social dimension of quality of life following spinal cord injury or disease: an international ICF-linking study.

STUDY DESIGN: International Classification of Functioning, Disability and Health (ICF) linking study. OBJECTIVE: Analyze cognitive interview data using the ICF as an analytic framework, to examine aspects of social life relevant to quality of life (QoL) according to people with spinal cord injury or disease (SCI/D). This study builds upon results of an international study about the cross-cultural validity of the International SCI QoL Basic Data Set (QoL-BDS). SETTING: Four specialized outpatient clinics in SCI/D rehabilitation, from the US, Brazil and Australia. METHODS: Analysis of qualitative data from 39 cognitive interviews with SCI/D patients at least one year post onset. Participants were asked to define their concept of QoL, overall life satisfaction, physical health and psychological health, and other relevant matters. Four independent researchers coded text fragments related to the items, and fragments were linked to ICF chapters d6-d9, following established linking rules. RESULTS: The proportion of text referring to social life was 35.8% (definition QoL), 24.9% (QoL life as whole), 6.0% (physical health) and 34.9% (psychological health). The most frequent ICF categories were d760 Family relationships, d770 Intimate relationships and d920 Recreation and leisure. Most frequent responded social topics to the 'other issues' item were d770 Intimate relationships, d760 Formal relationships, and d870 Economic self-sufficiency. CONCLUSION: The importance of social life aspects to the QoL was highlighted based on responses of SCI/D patients, clearly demonstrated through the ICF linking process. Adding a satisfaction with social life item to the QoL-BDS has made this instrument a more comprehensive measure.

Using Clinical Vignettes and a Modified Expert Delphi Panel to Determine Parameters for Identifying Non-Traumatic Spinal Cord Injury in Health Administrative and Electronic Medical Record Databases.

OBJECTIVE: To obtain expert consensus on the parameters and etiologic conditions required to retrospectively identify cases of non-traumatic spinal cord injury (NTSCI) in health administrative and electronic medical record (EMR) databases based on the rating of clinical vignettes. DESIGN: A modified Delphi process included 2 survey rounds and 1 remote consensus panel. The surveys required the rating of clinical vignettes, developed after chart reviews and expert consultation. Experts who participated in survey rounds were invited to participate in the Delphi Consensus Panel. SETTING: An international collaboration using an online meeting platform. PARTICIPANTS: Thirty-one expert physicians and/or clinical researchers in the field of spinal cord injury (SCI). MAIN OUTCOME MEASURE(S): Agreement on clinical vignettes as NTSCI. Parameters to classify cases of NTSCI in health administrative and EMR databases. RESULTS: In health administrative and EMR databases, cauda equina syndromes should be considered SCI and classified as a NTSCI or TSCI based on the mechanism of injury. A traumatic event needs to be listed for injury to be considered TSCI. To be classified as NTSCI, neurologic sufficient impairments (motor, sensory, bowel, and bladder) are required, in addition to an etiology. It is possible to have both a NTSCI and a TSCI, as well as a recovered NTSCI. If information is unavailable or missing in health administrative and EMR databases, the case may be listed as "unclassifiable" depending on the purpose of the research study. CONCLUSION: The Delphi panel provided guidelines to appropriately classify cases of NTSCI in health administrative and EMR databases.

International Spinal Cord Injury Core Data Set (version 3.0)-including standardization of reporting.

STUDY DESIGN: Expert opinion, feedback, revisions and final consensus. OBJECTIVES: To update the International Spinal Cord Injury (SCI) Core Data Set while still retaining recommended standardization of data reporting. SETTING: International. METHODS: Comments on the data elements received from the SCI community were discussed in the International Core Data Set working group. The suggestions from this group were iteratively reviewed. The final version was circulated for final approval. RESULTS: The International SCI Core Data Set (Version 3.0) consists of 21 variables. The variable 'Gender' has been changed to 'Sex assigned at birth'; for the variable 'Spinal Cord Injury Etiology', the item, 'Sports or exercise during leisure time', has been clarified as 'including during leisure time'; for the variables 'Vertebral injury' and 'Associated injuries', the item 'Unknown' is reworded into: 'Not applicable (non-traumatic case)' and 'Unknown'; the variable 'Spinal surgery' has been expanded to include surgeries for individuals with non-traumatic SCI; for the variables related to the International Standards for Neurological Classification of SCI only the neurological level of injury (NLI) and the American Spinal Injury Association (ASIA) Impairment Scale (AIS) are to be reported, and a separate variable is included indicating if the NLI or the AIS or both are impacted by a non-SCI condition. CONCLUSION: The International SCI Core Data Set (Version 3.0) should be collected and reported for all studies of SCI to facilitate uniform descriptions of SCI populations and facilitate comparison of results collected worldwide.

International spinal cord injury socio-demographic basic data set (version 1.0).

STUDY DESIGN: Consensus based on the literature. OBJECTIVE: Create an International Spinal Cord Injury (SCI) Socio-Demographic Basic Data Set (Version 1.0). SETTING: International. METHODS: The development included an iterative process where the authors reviewed existing variables containing socio-demographic variables and created a first dataset draft, which was followed by several revisions through email communications. In addition, the work was conducted in parallel with a similar endeavour within the National Institute of Neurological Disorders and Stroke SCI Common Data Elements project in the United States. Subsequently, harmonization between the two projects was sought. Following this, a review process was initiated, including The International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, and the International Spinal Cord Society (ISCoS) Scientific and Executive Committees, and then by publishing on the respective websites for membership feedback. The draft was sent to about 40 national and international organizations and several interested individuals for feedback. All review comments were discussed in the working group and responded to before the final draft was developed, and finally approved by ASIA Board and the ISCoS Scientific and Executive committees. RESULTS: The final International SCI Socio-Demographic Basic Data Set includes the following variables: Date of data collection, Marital status, Household member count, Years of formal education, and Primary occupation. CONCLUSION: The International SCI Socio-Demographic Basic Data Set will facilitate uniform data collection and reporting of socio-demographic information at the time of injury as well as at post-injury follow-ups to facilitate the evaluation and comparisons across studies.

Rasch Analysis of the International Quality of Life Basic Data Set Version 2.0.

OBJECTIVE: To examine the internal construct validity of the International Spinal Cord Injury Quality of Life Basic Data Set Version 2.0 (QoL-BDS V2.0) and compare this with the internal construct validity of the original version of the QoL-BDS. DESIGN: International cross-sectional psychometric study. SETTING: Spinal rehabilitation units, clinics, and community. PARTICIPANTS: The study involved 5 sites and 4 countries, 2 of whose primary language is not English. Each site included a consecutive sample of inpatients with spinal cord injury or disease (SCI/D) and a convenience sample of individuals with SCI/D living in the community (N=565). MAIN OUTCOME MEASURES: The QoL-BDS V2.0 consists of the 3 original items on satisfaction with life as a whole, physical health, psychological health of the QoL-BDS, and an additional item on satisfaction with social life. All 4 items are answered on a 0-10 numeric rating scale. Rasch analysis was performed on versions 1.0 and 2.0 of the QoL-BDS to examine the ordering of the items' response options, item scaling, reliability, item fit, local item independence, differential item functioning, and unidimensionality. RESULTS: The sample included 565 participants with 57% outpatients and 43% inpatients. Mean age was 51.4 years; 71% were male; 65% had a traumatic injury, 40% had tetraplegia, and 67% were wheelchair users. Item thresholds were collapsed for ordering, and subsequent analyses showed good internal construct validity for the QoL-BDS V2.0 with a person separation reliability of 0.76 and Cronbach α of 0.81. Infit and outfit statistics ranged 0.62-0.91. No local dependencies and multidimensionality were found. Differential item functioning was observed only for country and inpatients vs outpatients but not for other participants' characteristics. Differences in internal construct validity between the 3-item and 4-item versions were minimal. CONCLUSIONS: The results of this Rasch analysis support the internal construct validity of the QoL-BDS V2.0.

A cross-cultural mixed methods validation study of the spinal cord injury quality of life basic dataset (SCI QoL-BDS).

STUDY DESIGN: Mixed methods inquiry using cognitive interviews and thematic content analysis. OBJECTIVES: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items. SETTING: International, community. METHODS: Semi-structured cognitive interviews with 51 participants across five sites and four countries. Participants with spinal cord injury/disease (SCI/D) completed the SCI QoL-BDS items and one additional question. Interviews were audio recorded and transcribed. Transcripts were coded using NVivo software. Coded data were analyzed using thematic content analysis. Seventeen themes were identified. Responses by sites were compared for conceptual equivalence. RESULTS: Across the five sites, equivalence in the conceptual meaning of QoL was found based on the frequent commonalities in terminology employed to describe it. Despite sample differences in terms of demographic and SCI characteristics, participants across all sites replied to the SCI QoL-BDS items in a similar way, suggesting good item equivalence. Qualitatively, the differences noted with respect to the use of themes for each question suggest some variability on how participants with SCI/D describe QoL. In spite of these contextual differences, there is a high degree of commonalty not explained by participants' demographic or injury/disease characteristics. CONCLUSIONS: The SCI QoL-BDS shows good cross-cultural validity among the international sites included in this study.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.

STUDY DESIGN: International multicentre cross-sectional study. OBJECTIVES: To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. SETTING: Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. METHODS: An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. RESULTS: The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. CONCLUSIONS: As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.

Correction: Validation of a clinical prediction rule for ambulation outcome after non-traumatic spinal cord injury.

An amendment to this paper has been published and can be accessed via a link at the top of the paper.

Validation of a clinical prediction rule for ambulation outcome after non-traumatic spinal cord injury.

STUDY DESIGN: Prospective cohort study. OBJECTIVES: To validate a Clinical Prediction Rule (CPR) for ambulation in a non-traumatic spinal cord injury population (NTSCI). SETTING: Tertiary spinal rehabilitation inpatient service, Melbourne, Australia. METHODS: Adults with confirmed NTSCI were recruited between April 2013 and July 2017. Data based on the original van Middendorp CPR (age and four neurological variables) were collected from participant's medical records and by interview. The Spinal Cord Independence Measure item 12 was used to quantify the ability to walk at 6 and 12 months. A receiver operator curve (ROC) was utilised to determine the performance of the CPR. Ambulatory outcomes were compared for AIS A, B, C and D and aetiology groups. RESULTS: The area under the ROC curve (AUC) was 0.94 with 95% confidence interval (CI) 0.86-1.0 (n = 52). Overall accuracy was 75% at 6 months and 82% at 12 months. For the whole cohort the sensitivity at 12 months was 95% and specificity 73%. However, specificity for AIS C and D was only 50%. CONCLUSION: The CPR correctly predicted those who did not walk at 6 and 12 months following NTSCI, but was less accurate in predicting those who would walk particularly those with an AIS C or D classification. This CPR may be useful to inform planning for future care in individuals with NTSCI, particularly for those who are not expected to walk. Further research with larger sample sizes is required to determine if the trends identified in this study are generalisable.

A therapeutic songwriting intervention to promote reconstruction of self-concept and enhance well-being following brain or spinal cord injury: pilot randomized controlled trial.

OBJECTIVE: To determine the size of the effects and feasibility (recruitment and retention rates) of a therapeutic songwriting protocol for in-patients and community-dwelling people with acquired brain injury or spinal cord injury. DESIGN: Randomized controlled trial with songwriting intervention and care-as-usual control groups, in a mixed measures design assessed at three time points. PARTICIPANTS: A total of 47 participants (3 in-patients with acquired brain injury, 20 community participants with acquired brain injury, 12 in-patients with spinal cord injury, and 12 community participants with spinal cord injury: 23 1208 days post injury). INTERVENTIONS: The intervention group received a 12-session identity-targeted songwriting programme, where participants created three songs reflecting on perceptions of past, present, and future self. Control participants received care as usual. MEASURES: Baseline, postintervention, and follow-up measures comprised the Head Injury Semantic Differential Scale (primary outcome measure), Patient Health Questionnaire-9, Emotion Regulation Questionnaire, and Satisfaction with Life Scale. RESULTS: No significant between group pre-post intervention differences were found on the primary self-concept measure, the Head Injury Semantic Differential Scale ( p = 0.38, d = 0.44). Significant and large effect sizes from baseline to post between groups in favour of the songwriting group for Satisfaction with Life ( p = 0.04, n2 p = 0.14). There were no significant between group pre-post interaction effects for the Emotion Regulation Suppression subscale ( p = 0.12, n2 p = -0.08) although scores decreased in the songwriting group over time while increasing for the standard care group. There were no significant differences in baseline to follow-up between groups in any other outcome measures. Recruitment was challenging due to the small number of people eligible to participate combined with poor uptake by eligible participants, particularly the in-patient group. Retention rates were higher for the community-dwelling cohorts. CONCLUSION: This study demonstrates the challenges in recruitment and retention of participants invited to participate in a music therapy study. Findings suggest this identity-focused therapeutic songwriting protocols may be more beneficial for people who have transitioned from in-patient to community-contexts given the greater proportion of participants who consent and complete the intervention. Preliminary effects in favour of the intervention group were detected in a range of well-being measures suggesting that a larger study is warranted.

Preliminary psychometric analyses of the International Spinal Cord Injury Quality of Life Basic Data Set.

STUDY DESIGN: Secondary psychometric analysis of cross-sectional previously collected data. OBJECTIVES: Explore the floor and ceiling effects, convergent, and divergent validity of the International Spinal Cord Injury Basic Quality of Life Data Set (SCI QoL-BDS) in a sample of people with spinal cord damage (SCD) from different countries, with different causes (both traumatic and non-traumatic), and different settings. SETTING: Community dwellers with SCD in Australia, Brazil, India, The Netherlands, and USA, and inpatient rehabilitation: India. METHODS: Adults (>18 years) with chronic SCD with either traumatic or non-traumatic aetiologies living in the community (n = 624), in inpatient rehabilitation following the onset of SCI (India; n = 115) and able-bodied controls (Australia; n = 220) had the following data collected by survey or face-face interview: SCI QoL-BDS, demographic and clinical characteristics (e.g., age, gender, years post SCI/SCD, education, employment) and reference measures of quality of life, disability and depression. RESULTS: For the whole sample, there were no notable floor or ceiling effects, internal consistency was good (Cronbach's alpha = 0.84) and the corrected item-total correlations generally were acceptable (all > 0.3 except for in Brazilian cohort). Convergent and divergent validity were largely confirmed though there were some aspects of validity that were suboptimal. CONCLUSIONS: Only minor psychometric issues were identified. This preliminary analysis suggests that there are no reason for concern about the use of the SCI QoL-BDS for clinical or research purposes, notwithstanding the need for further studies.

Global mapping for the epidemiology of paediatric spinal cord damage: towards a living data repository.

STUDY DESIGN: Literature review. OBJECTIVES: Globally map key paediatric spinal cord damage epidemiological measures and provide a framework for an ongoing repository of data. SETTING: Worldwide, initiative of ISCoS Prevention Committee. METHODS: Literature search of Medline (1946-March 2017) and Embase (1974-March 2017). Relevant articles in any language regarding children with spinal cord damage included. Stratification of data quality into Green/Yellow /Red 'zones' facilitated comparison between countries. RESULTS: A total of 862 abstracts were reviewed and data from 25 articles were included from 14 countries in 6 of the 21 Global Regions. Fourteen studies involved paediatric traumatic spinal cord injury (SCI) and seven were regarding non-traumatic spinal cord dysfunction (SCDys). An additional four articles provided both paediatric SCI and SCDys data. The median SCI incidence rates in Global Regions were: Asia, East 5.4/million population/year; Australasia 9.9/million population/year; Western Europe 3.3/million population/year and North America, High Income 13.2 million population/year. The median SCDys incidence rates in Global Regions were: Australasia 6.5/million population/year; Western Europe 6.2/million population/year and North America, High Income 2.1/million population/year. SCI was mostly due to land transport (46-74%), falls (12-35%) and sport/recreation (10-25%) and SCDys was mostly caused by tumours (30-63%) and inflammatory/autoimmune causes (28-35%). CONCLUSIONS: There is a scarcity of quality epidemiology studies of paediatric SCD regarding incidence, prevalence, aetiology and survival. Recent ISCoS frameworks provide guidance for researchers to use established classification of SCDys and age group cut-off levels in future studies, thereby improving the ability to compare and combine data.

Reproducibility of the international spinal cord injury quality of life basic data set: an international psychometric study.

STUDY DESIGN: Psychometric study. OBJECTIVES: To examine the reproducibility of the international spinal cord injury quality of life basic data set (QoL-BDS) in an international sample of community-dwelling adults with spinal cord injury or disease (SCI/SCD) and in subgroups with respect to age (< 50 vs. ≥ 50 years) and etiology. SETTING: Outpatient rehabilitation clinics and community. METHODS: Participants were people living with SCI/D in four countries, at least 1 year post onset and at least 18 years of age. The QoL-BDS consists of three items on satisfaction with life as a whole, physical health and psychological health rated on a 0-10 numerical rating scale. A fourth item on satisfaction with social life was included based on feedback from participants. RESULTS: A total of 79 people were included. Median age was 52 years. Most participants (69.6%) had SCI, paraplegia (53%), and 40.5% reported a motor complete injury. Median time between tests was 14 days (range 4-27). Intra-class correlation (ICC) values of the items ranged from 0.66 to 0.80. ICC values of the three-item and four-item total scores were identical and good (0.83; 95% CI 0.75-0.89). Subgroup analyses showed ICC values ranging from 0.76 to 0.83. Bland-Altman plots suggested no bias for the three-item total score, but some bias for the four-item total score. The limits of agreement of both scores were similar, wide at individual level and small at group level. CONCLUSIONS: This study provides evidence of reproducibility of the current version of the QoL-BDS. When adding a fourth item, reproducibility was maintained.

Special considerations in the urological management of the older spinal cord injury patient.

PURPOSE: This paper reports the key findings of Committee 8 of the Joint SIU-ICUD Consultation on Urologic Management of the Spinal Cord Injured Patient and address issues pertaining to the older person with a SCI and the time-related changes relevant to their urological, gastrointestinal and functional management. METHODS: A literature review using the Pubmed and Ovid search engines was performed examining pertinent literature regarding SCI in the older patient. RESULTS: There is a rising incidence of both traumatic and non-traumatic spinal cord injury (SCI) in older people and improvements in healthcare and nutrition mean patients with SCI are living longer. Outcomes after a SCI in the older person are a sum of the effects of injury and its management compounded by specific effects of ageing and the emergence of unrelated comorbidities. Changes in health, comorbidities, cognition and dexterity with ageing have an impact on function and are important considerations in the management of the older patient with SCI. Treatment decisions are thus increasingly complex due to the need to take into account these changes and accompanying polypharmacy. For the person living with a SCI, changes in circumstances (social and financial) have an impact on quality of life and influence management and support strategies. CONCLUSIONS: Older patients with SCI face additional challenges both in the acute setting and with ageing. Clinicians should take into account comorbid conditions, mental health, physical function, cognition and social support in making management decisions. With the global ageing population, health services planning will need to allow for increase in resources required to care for older patients with SCI.

Optimizing the Management of Spasticity in People With Spinal Cord Damage: A Clinical Care Pathway for Assessment and Treatment Decision Making From the Ability Network, an International Initiative.

The recognition, evaluation, and management of disabling spasticity in persons with spinal cord damage (SCD) is a challenge for health care professionals, institutions, health systems, and patients. To guide the assessment and management of disabling spasticity in individuals with SCD, the Ability Network, an international panel of clinical experts, developed a clinical care pathway. The aim of this pathway is to facilitate treatment decisions that take into account the effect of disabling spasticity on health status, individual preferences and treatment goals, tolerance for adverse events, and burden on caregivers. The pathway emphasizes a patient-centered, individualized approach and the need for interdisciplinary coordination of care, patient involvement in goal setting, and the use of assessment and outcome measures that lend themselves to practical application in the clinic. The clinical care pathway is intended for use by health care professionals who provide care for persons with SCD and disabling spasticity in various settings. Barriers to optimal spasticity management in these people are also discussed. There is an urgent need for the clinical community to clarify and overcome barriers (knowledge-based, organizational, health system) to optimizing the management of spasticity in people with SCD.

Optimizing the Management of Disabling Spasticity Following Spinal Cord Damage: The Ability Network-An International Initiative.

Optimizing the treatment of disabling spasticity in persons with spinal cord damage is hampered by a lack of consensus regarding the use of acceptable definitions of spasticity and disabling spasticity, and the relative absence of decision tools such as clinical guidelines and concise algorithms to support decision-making within the broader clinical community. Many people with spinal cord damage are managed outside specialist centers, and variations in practice result in unequal access to best practice despite equal need. In order to address these issues, the Ability Network-an international panel of clinical experts-was initiated to develop management algorithms to guide and standardize the assessment, treatment, and evaluation of outcomes of persons with spinal cord damage and disabling spasticity. To achieve this, consensus was sought on common definitions through facilitated, in-person meetings. To guide patient selection, an in-depth review of the available tools was performed and expert consensus sought to develop an appropriate instrument. Literature reviews are guiding the selection and development of tools to evaluate treatment outcomes (body functions, activity, participation, quality of life) as perceived by people with spinal cord damage and disabling spasticity, and their caregivers and clinicians. Using this approach, the Ability Network aims to facilitate treatment decisions that take into account the following: the impact of disabling spasticity on health status, patient preferences, treatment goals, tolerance for adverse events, and in cases of totally dependent persons, caregiver burden.

International Retrospective Comparison of Inpatient Rehabilitation for Patients With Spinal Cord Dysfunction: Differences According to Etiology.

OBJECTIVES: To describe and compare epidemiologic characteristics and clinical outcomes of patients with nontraumatic spinal cord dysfunction according to etiology. DESIGN: Retrospective, multicenter open-cohort case series. SETTING: Spinal rehabilitation units (SRUs) in 9 countries. PARTICIPANTS: Patients (N=956; men, 60.8%; median age, 59.0y [interquartile range, 46-70.0y]; paraplegia, n=691 [72.3%]) with initial onset of spinal cord dysfunction consecutively admitted between January 1, 2008, and December 31, 2010. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Etiology of spinal cord dysfunction, demographic characteristics, length of stay (LOS) in rehabilitation, pattern of spinal cord dysfunction onset, discharge destination, level of spinal cord damage, and the American Spinal Injury Association Impairment Scale (AIS) grade on admission and discharge. RESULTS: The most common etiologies were degenerative (30.8%), malignant tumors (16.2%), infections (12.8%), ischemia (10.9%), benign tumors (8.7%), other vascular (8.5%), and other conditions (12.1%). There were major differences in epidemiologic characteristics and clinical outcomes of patients with different etiologies of spinal cord dysfunction. Paraplegia was more common in patients with a malignant tumor and vascular etiologies, while tetraplegia was more common in those with a degenerative etiology, a benign tumor, and infections. Patients with a malignant tumor tended to have the shortest LOS in the SRU, while those with a vascular etiology tended to have the longest. Except for patients with a malignant tumor, all patient groups had a significant change in their AIS grade between admission and discharge. CONCLUSIONS: This international study of spinal cord dysfunction showed substantial variation between the different etiologies regarding demographic and clinical characteristics, including changes in AIS between admission and discharge.

Estimating the incidence and prevalence of traumatic spinal cord injury in Australia.

OBJECTIVES: To determine estimates of the incidence and prevalence of traumatic spinal cord injury (TSCI) in Australia as of June 30, 2011. DESIGN: Population modeling using cohort survival. SETTING: Australia. PARTICIPANTS: Hospital data regarding people with TSCI in Australia. INTERVENTIONS: Modeling using the following data: 2 population-based databases of hospital separations of patients with TSCI, giving upper and lower estimates of incidence; national population profiles and life tables; levels of TSCI based on Australian Spinal Cord Injury Registry; and life expectancy for persons with spinal cord injury under 3 scenarios--1 constant and 2 with a trend standardized mortality ratio (SMR). MAIN OUTCOME MEASURES: Age- and sex-specific incidence and prevalence estimates. RESULTS: The lower estimate of incidence was 21.0 per million population per year, and the upper estimate was 32.3 per million population per year. The derived prevalence rates ranged from 490 per million population (10,944 persons--lower incidence, trend SMR with survival from 1948) up to 886 per million population (19,784 persons--higher incidence, constant SMR). The prevalence was highest in males, persons aged 46 to 60 years, and those with tetraplegia. CONCLUSIONS: We have reported a method for calculating an estimate of the prevalence of TSCI which provides information that will be vital to optimize health care planning for this group of highly disabled members of society.

International retrospective comparison of inpatient rehabilitation for patients with spinal cord dysfunction epidemiology and clinical outcomes.

OBJECTIVE: To describe and compare epidemiologic characteristics of patients with spinal cord dysfunction admitted to spinal rehabilitation units (SRUs) in 9 countries (Australia, Canada, Italy, India, Ireland, The Netherlands, Switzerland, United Kingdom, and United States). DESIGN: Retrospective multicenter open-cohort case series. SETTING: SRUs. PARTICIPANTS: Patients (N=956) with initial onset of spinal cord dysfunction consecutively admitted between January 1, 2008, and December 31, 2010. Median age on admission was 59 years (interquartile range [IQR], 46-70), and 60.8% of patients were men. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Demographic characteristics (eg, age, sex), time frame over which clinical symptoms of spinal cord dysfunction developed, etiology, length of stay in hospital, level of lesion and American Spinal Injury Association Impairment Scale (AIS) grade, discharge destination, and inpatient mortality. RESULTS: The time frame of onset of spinal cord dysfunction symptoms was as follows: ≤1 day (28.5%); ≤1 week (13.8%); >1 week but ≤1 month (10.5%), and >1 month (47.2%). Most common etiologies were degenerative conditions (30.8%), malignant tumors (16.2%), ischemia (10.9%), benign tumors (8.7%), and bacterial infections (7.1%). Most patients (72.3%) had paraplegia. The AIS grade on SRU admission was grade A in 14%, grade B in 6.5%, grade C in 24%, grade D in 52.4%, grade E in 0.2%, and missing in 2.9%. AIS grade significantly improved by discharge (z=-10.1, P<.0001). Median length of stay in the SRU was 46.5 days (IQR, 17-89.5). Most (80.5%) patients were discharged home. Differences between countries were found for most variables. CONCLUSIONS: This international study of spinal cord dysfunction showed substantial variation of etiology, demographic, and clinical characteristics across countries. Further research, including multiple centers per country, are needed to separate country effects from center effects.

A prospective multicentre study of barriers to discharge from inpatient rehabilitation.

OBJECTIVES: To assess the prevalence of and reasons for barriers to discharge from inpatient rehabilitation, to measure the resulting additional days in hospital, and to determine if these were predicted by key demographic or clinical variables. DESIGN, SETTING AND PARTICIPANTS: Prospective open cohort study of 360 patients admitted into two inpatient rehabilitation units in Melbourne over an 8-02 and a 10-02 period in 2008. MAIN OUTCOME MEASURES: Occurrence of discharge barriers, their causes and the duration of unnecessary hospitalisation. RESULTS: There were 360 patients in the study sample, 186 were female (51.7%), and mean age was 58.4 years. Fifty-nine (16.4%) patients had a discharge barrier. The most frequent causes of discharge barriers were patients being non-weight bearing after lower limb fracture, family deliberations about discharge planning, waiting for home modifications and waiting for accommodation. Patients with acquired brain damage and lower limb fracture were the impairment groups most likely to experience a discharge barrier. Over the study period, 21.0% (3152/14 976) of all bed-days were occupied by patients deemed to have a discharge barrier. Regression analysis showed that age, sex, impairment group and dependency level on admission all influenced the occurrence of a discharge barrier. Although regression analysis showed that dependency on admission and age group were significant predictors of additional days in hospital resulting from discharge barriers (P = 0.006), these variables explained only 11% of the additional bed-days. CONCLUSION: Barriers to discharge from inpatient rehabilitation are common and substantial, and they represent an important opportunity for improvement.