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.

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.

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.

Defining barriers to discharge from inpatient rehabilitation, classifying their causes, and proposed performance indicators for rehabilitation patient flow.

There is little research literature on patient flow in rehabilitation. Accepted definitions of barriers to discharge and agreed performance measures are needed to support research and understanding of this topic. The potential of improved patient flow in rehabilitation to assist relieving demand pressures in acute hospitals underscores its importance. This study develops a definition of barriers to discharge from postacute care and classifies their causes using a multiphased iterative consultation and feedback process involving physiatrists, aged-care physicians, and senior nursing and allied health clinicians. Key performance indicators (KPIs) for postacute patient flow are then proposed, the development of which were informed by the available literature and a survey (n=101) of physiatrists, aged-care physicians, and hospital managers with responsibility for patient flow who were questioned about the use of relevant KPIs in this setting. Most (>70%) respondents believed that using KPIs (eg, waiting time from acceptance by postacute care and ready for transfer until admission, percentage of postacute bed days occupied by inpatients with a discharge barrier) to measure aspects of patient flow could improve processes, but few reported collecting this information (45% admission KPIs, 19% discharge KPIs). By using the definition and classification of discharge barriers prospectively to document and address barriers, in conjunction with appropriate KPIs, postacute patient flow and the efficiency of hospital resource utilization can potentially be improved. Our commentary aims to stimulate interest among others to develop a more robust evidence base for improved flow through postacute care.

What to call spinal cord damage not due to trauma? Implications for literature searching.

OBJECTIVES: To illustrate the importance of multiple search terms and databases when searching publications on spinal cord damage not due to trauma. To develop comprehensive search filter for this subject, compare the results for 2000-2009 with the Medical Subject Headings (MeSH) and Emtree term 'spinal cord diseases' and determine changes in the number of articles over this period. DESIGN: Literature searches and search filter development. SETTING: Australia. INTERVENTIONS: Titles and abstracts searched in MEDLINE and EMBASE (2000-2009) for articles involving humans using search terms 'non-traumatic spinal cord injury' and 'nontraumatic spinal cord injury' (concise search). Develop comprehensive search filter for 'spinal cord damage not due to trauma' and compare the results with the MeSH term 'spinal cord diseases.' OUTCOME MEASURES: Annual publications (2000-2009) identified in MEDLINE and EMBASE literature searches. RESULTS: Concise search identified 35 articles published during 2000-2009. More publications were identified using the term 'nontraumatic spinal cord injury' (n = 20) than 'non-traumatic spinal cord injury' (n = 16). Publications increased for both terms 'spinal cord diseases' (2000 = 279; 2009 = 415) and 'spinal cord damage not due to trauma' identified by the comprehensive search filter (2000 = 1251; 2009 = 1921). CONCLUSIONS: Concise searches using terms 'non-traumatic spinal cord injury' and 'nontraumatic spinal cord injury' fail to identify relevant articles unless combinations of terms and databases are used. These are inadequate search terms for a comprehensive search. Further research is needed to validate our comprehensive search filter. An international consensus process is required to establish an agreed term for 'spinal cord damage not due to trauma.'

A longitudinal examination of the frequency and correlates of self-reported neurobehavioural disability following stroke.

PURPOSE: To determine the frequency, impact, and factors associated with self-reported neurobehavioural disability (NBD) in individuals with stroke. A secondary aim was to examine the course of self-reported NBD over time and associations with outcomes. METHODS: Eighty-seven participants admitted for inpatient rehabilitation post-stroke completed the St Andrew's-Swansea Neurobehavioural Outcome Scale. Demographic and stroke details and measures of functional disability, cognitive impairment, mood, and self-rated impact of NBD symptoms were completed. Twenty-seven participants and 19 close-others were reassessed three to six months following discharge. RESULTS: Overall reporting of neurobehavioural problems was infrequent. The domains of interpersonal and cognitive difficulties were the most commonly identified but were still only reported occasionally. However, even mild NBD was significantly correlated with negative impact. Greater self-reported NBD was significantly correlated with greater functional dependence, anxiety, and depression during inpatient rehabilitation. Self-reports of NBD remained stable over time and, at follow-up, was significantly correlated with depressive symptoms both in participants with stroke and close-others. CONCLUSIONS: In survivors of stroke, self-report of NBD is associated with poor outcomes in function, anxiety, and depression. These findings highlight the importance of routine and comprehensive assessment and intervention to manage NBD following stroke.IMPLICATIONS FOR REHABILITATIONDespite relatively infrequent self-reporting, presence of NBD remained stable across a six month follow-up period following rehabilitation which highlights the potential persistent nature of these difficulties.Even mild levels of self-reported NBD were associated with emotional distress in both stroke survivors and their significant others indicating a need for relevant interventions to support long-term outcomes.Routine screening for the presence of NBD is recommended to facilitate early detection and intervention to optimise post-stroke recovery.

Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI).

PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with ≥20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.

Inpatient subacute care in Australia: perceptions of admission and discharge barriers.

OBJECTIVE: To determine perceptions of barriers to admission to subacute care from acute hospital care, and barriers to subsequent discharge from subacute care. DESIGN, PARTICIPANTS AND SETTING: Web-based survey of key stakeholders using Likert scales and closed questions. Prompts were emailed repeatedly to potential participants in Australia between 15 May and 24 July 2009. Participants were physicians working in inpatient rehabilitation medicine and aged care units, as well as senior hospital managers with responsibility for patient flow. MAIN OUTCOME MEASURES: Perceived admission and discharge barriers in subacute care. RESULTS: Half of the 101 respondents reported barriers to admission to subacute hospitals as moderate, severe or extreme, and 81% reported a similar grading of severity for barriers to discharge. There was no relationship between these perceptions and whether respondents worked only in the public hospital system (barriers to access: χ² = 0.02 [df = 1; P = 1.0]; and barriers to discharge: χ² = 0.0 [df = 1; P = 1.0]). The most commonly reported barriers to admission were: availability of beds (61% of respondents); physical, environmental and equipment inadequacies (62% of respondents); and allied health or nursing staff issues (55% of respondents). The most commonly reported barriers to discharge included: waiting for a more appropriate setting of care (76% of respondents) and funding for home modifications, equipment or carers (55% of respondents). There was no relationship between respondents' position and their reporting of various admission (χ² = 6.2; df = 8; P = 0.6) or discharge barriers (χ² = 13.8; df = 12; P = 0.3). CONCLUSION: There is a strong perception among key stakeholders in subacute care that there are major barriers to patient admission and discharge. Redistributing proposed funding for inpatient subacute beds to measures for overcoming these barriers is likely to improve patient flow though the whole hospital system.

A report on disability and rehabilitation medicine in Pakistan: past, present, and future directions.

Disability is a stigma in Pakistan, and cultural norms are a hindrance to the integration of the disabled into the community. Additional barriers to addressing the needs of the disabled include the lack of reliable disability epidemiologic data, inadequate funding and poor health care infrastructure, and workforce shortages. The aim of this report is to present an overview of Physical Medicine and Rehabilitation (PM&R) in Pakistan, covering its origins, current status, and future directions. An electronic literature search (1950-2009) was conducted using the Medline, ScienceDirect, Springer Link, CINAHL, and Google Scholar databases. The key words used were "disability," "persons with disability" (PWDs), "rehabilitation," "Pakistan," "developing countries," "stroke," "spinal cord injury," "causes," "attitudes," "physiotherapy," "occupational therapy," and "speech therapy." Only publications in English involving physical disability were selected. Statistical data were obtained from the Federal Bureau of Statistics. Interviews with pioneers of rehabilitation medicine in Pakistan, PWDs, and their families were conducted. The origins of PM&R in Pakistan date to the 1960s, but the formal training program began only in 1997. There are only a few rehabilitation departments, and none have all the standard components of a rehabilitation team. The number of practicing rehabilitation consultants is 38. There are an estimated 1000 physical therapists and 150 occupational therapists. There is a need to increase the number of rehabilitation facilities significantly, staff them appropriately, and make them accessible to all who need them, including rural and remote regions. Discrimination should be addressed by education and legislation.