Monitoring outcome measures for cardiometabolic disease during rehabilitation and follow-up in people with spinal cord injury.

STUDY DESIGN: Controlled pragmatic intervention with follow-up. OBJECTIVES: To describe cardiometabolic risk outcomes after a pragmatic intervention implemented into standard spinal cord injury (SCI) rehabilitation. SETTING: Inpatient SCI rehabilitation in East-Denmark. PARTICIPANTS: Inpatients, >18 years, having sustained a SCI within the last 12 months at admission to rehabilitation, regardless of etiology, neurological level or completeness of the lesion or mobility status. METHODS: Patient education on health promotion was guided by evidence and included feedback on peak oxygen uptake (VO2peak) (primary outcome measure), body mass index (BMI), Dual energy X-ray absorptiometry and metabolic profile (secondary outcome measures). Paired t-tests, non-parametric tests and Analysis of Variance (ANOVA) were used for analyzes. VO2peak and BMI were compared to historical data. RESULTS: VO2peak increased significantly from admission to discharge but did not exceed historical data despite a minimal clinical important difference. BMI decreased significantly during rehabilitation (p < 0.001) followed by a significant increase after discharge (p = 0.006). There was a trend that people with American Spinal Injury Association Impairment Scale (AIS) D SCI increased lean mass to nearly normal values. Criteria for pre-diabetes or diabetes were present in 28.5% and dyslipidemia in 45% of the participants 44.2 days after time of injury. CONCLUSIONS: Despite improvements during rehabilitation, outcome measures were worse than recommended, and most outcome measures worsened at follow up, even in people with an AIS D SCI. Meaningful support regarding exercise and diet when tackling altered life circumstances is needed after discharge.

"I am just trying to live a life!" -a qualitative study of the lived experience of pressure ulcers in people with spinal cord injuries.

BACKGROUND: Pressure ulcers (PUs) are frequently reported in people with spinal cord injuries (SCI). Wound management in people with SCI involves relieving pressure on the affected area by means of immobilisation and bed rest. The healing time of a PU can vary, but often takes several months or even years, causing people to stay in bed for prolonged periods of time. OBJECTIVE: This study aims to explore the perspectives and lived experiences of people with SCI who are affected by PUs. DESIGN: and method: This study is a qualitative explorative study that employs individual semi-structured in-depth interviews to obtain the narratives of people with SCI and a pressure ulcer. We used a phenomenological-hermeneutic approach that was inspired by Ricoeur's theory of interpretation. The analysis was performed in three levels: Naïve reading, structural analysis and critical interpretation and discussion. PARTICIPANTS: and setting: Ten people with SCI who were being treated in the Danish healthcare system for their PU participated in this study: six participants had experienced a complete traumatic SCI, three had an incomplete traumatic SCI, and one had a non-traumatic complete SCI. The study included nine men and one woman, aged 49-81 years (mean 64). Nine had a PU in the seating area, while one had the ulcer on the leg. RESULTS: The analysis revealed three themes: 1. Struggling to balance prevention with an active, meaningful life, 2. Challenges and consequences of pressure relief protocols and bed rest, 3. Experiencing prolonged and incoherent treatment with varying levels of staff engagement and competencies. CONCLUSIONS: People with SCI and a PU have difficulty balancing their active, redefined lives when subjected to a strict pressure relief protocol. The consequences of immobility caused by pressure relief include reduced social and community participation and decreased quality of life. PU treatment is experienced as incoherent and unnecessarily lengthy, leading to a deterioration in the wounds. Improving PU treatment for people with SCI is of utmost importance and has the potential to benefit not only the people with SCI but also the healthcare system and the economy.

Labour market participation after spinal cord injury. A register-based cohort study.

STUDY DESIGN: A register based cohort study. OBJECTIVES: To investigate labour market participation following spinal cord injury (SCI) and to describe the impact of personal and SCI characteristics. SETTING: Norway. METHODS: Persons registered with SCI in the Norwegian SCI registry 2011-2017, and matched reference individuals without SCI from the general population (named controls) were followed for up to six years after injury using national registry data on employment, education, income, and social security benefits. Main measures of labour market participation were: (1) Receiving any amount of pay for work, and (2) Receiving sickness and disability benefits. RESULTS: Among the 451 persons with SCI (aged 16-66 years and working before injury), the estimated percentages receiving pay for work and sickness and disability benefits in the sixth years after injury were 63% (95% CI 57-69) and 67% (95% CI 61-72). Corresponding percentages for the controls (n = 1791) were 91% (95% CI 90-93) for receiving pay for work and 13% (95% CI 12-15) for receiving sickness and disability benefits. Among persons with SCI, less severe neurological outcome, higher level of education, younger age at injury, and a stronger pre-injury attachment to employment (higher employment income, having an employer, less receipt of benefits), were associated with higher labour market participation. CONCLUSION: SCI substantially decreased labour market participation up to six years after injury compared to matched controls. Even if a relatively large proportion of persons with SCI remained in some degree of work activity, more than half did so in combination with receiving benefits.

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.

The international spinal cord injury pain basic data set (version 3.0).

STUDY DESIGN: Expert opinion, feedback, revisions, and final consensus. OBJECTIVES: To update the International Spinal Cord Injury Pain Basic Data Set (ISCIPBDS version 2.0) and incorporate suggestions from the SCI pain clinical and research community with respect to overall utility. SETTING: International. METHODS: The ISCIPBDS working group evaluated these suggestions and made modifications. The revised ISCIPBDS (Version 3.0) was then reviewed by members of the International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, individual reviewers and societies, and posted on the ASIA and ISCoS websites for 1 month to elicit comments before final approval by ASIA and ISCoS. RESULTS: The ISCIPBDS (Version 3.0) was updated to make the dataset more flexible and useful: 1. The assessment can be based on the patient's perception of several of his/her "worst" pain(s) or based on the International SCI Pain (ISCIP) Classification-defined or other pain types, depending on the specific research questions or clinical needs. 2. Pain interference should usually be rated for overall pain but may also be used for specific pain problems if needed. 3. An optional pain drawing was added to complement the check box documentation of pain location. 4. Data categories consistent with the Extended Pain Dataset list of current treatments were added. 5. Several new training cases were added.

Interventions, stakeholders, and organisation related to pressure ulcer prevention for individuals with spinal cord injuries in transition from hospital to home - A scoping review.

STUDY DESIGN: Scoping review. AIM OF THE STUDY: To obtain an overview of initiatives, organisational components, and stakeholders' perspectives on PU prevention in transitional care. METHODS: Scoping review searching the databases: MEDLINE, EMBASE), CINAHL, Cochrane Library, Web of Science, and SCOPUS in May 2022. Inclusion of English-written research on pressure ulcer prevention in adult people with spinal cord injury in transition from hospital or rehabilitation centre to the home care environment. RESULTS: Fifteen studies of different types are included in this study: six qualitative studies, four randomized controlled trials, three cohort studies, one cross-sectional study and an interventional study. The included studies are relatively low-level evidence but of acceptable quality. CONCLUSION: Continuous tailored education and information about PU prevention and follow-up services are essential components in preventing PUs and rehabilitating people with SCI. The complexity of SCI requires adaptations, equipment and access to specialist care and treatment after discharge. However, there is a discrepancy between the international recommendations, the perceived needs, and the delivered healthcare services. The consequences are a lower quality of life and a higher risk of PUs for people with SCI.

Reliability Validity and Responsiveness of the Spinal Cord Independence Measure 4th Version in a Multicultural Setup.

OBJECTIVE: To examine the fourth version of the Spinal Cord Independence Measure for reliability and validity. DESIGN: Partly blinded comparison with the criterion standard Spinal Cord Independence Measure III, and between examiners and examinations. SETTING: A multicultural cohort from 19 spinal cord injury units in 11 countries. PARTICIPANTS: A total of 648 patients with spinal cord injury. INTERVENTION: Assessment with Spinal Cord Independence Measure (SCIM IV) and Spinal Cord Independence Measure (SCIM III) on admission to inpatient rehabilitation and before discharge. MAIN OUTCOME MEASURES: SCIM IV interrater reliability, internal consistency, correlation with and difference from SCIM III, and responsiveness. RESULTS: Total agreement between examiners was above 80% on most SCIM IV tasks. All Kappa coefficients were above 0.70 and statistically significant (P<.001). Pearson's coefficients of the correlation between the examiners were above 0.90, and intraclass correlation coefficients were above 0.90. Cronbach's alpha was above 0.96 for the entire SCIM IV, above 0.66 for the subscales, and usually decreased when an item was eliminated. Reliability values were lower for the subscale of respiration and sphincter management, and on admission than at discharge. SCIM IV and SCIM III mean values were very close, and the coefficients of Pearson correlation between them were 0.91-0.96 (P<.001). The responsiveness of SCIM IV was not significantly different from that of SCIM III in most of the comparisons. CONCLUSIONS: The validity, reliability, and responsiveness of SCIM IV, which was adjusted to assess specific patient conditions or situations that SCIM III does not address, and which includes more accurate definitions of certain scoring criteria, are very good and quite similar to those of SCIM III. SCIM IV can be used for clinical and research trials, including international multi-center studies, and its group scores can be compared with those of SCIM III.

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

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

Socioeconomic consequences of traumatic and non-traumatic spinal cord injuries: a Danish nationwide register-based study.

STUDY DESIGN: A nationwide population-based register study. OBJECTIVES: To investigate the socioeconomic consequences of traumatic (tSCI) and non-traumatic (ntSCI) spinal cord injuries (SCI) in relation to health care costs, risk of job loss, and divorce. SETTING: Denmark. METHODS: All survivors admitted for specialized SCI rehabilitation from 2008 to 2018 were included (n = 1751), together with their relatives (n = 3084). Control groups for the SCI group (n = 8139) and their relatives (n = 15,921) were identified. Data on socioeconomics up to 2 years before and up to 4 years after the injury year were included. RESULTS: Survivors of tSCI and ntSCI had significantly increased health care costs 2 years before injury compared to their controls, and increased health care cost was maintained 4 years after the injury (all p values < 0.0001). The SCI group had significantly increased risk of job loss (OR = 9.26; 95% CI: 7.70-11.15) and higher risk of divorce (OR = 1.44; 95% CI: 1.08-1.87) the 3 following years after injury compared to controls, but risk of divorce was only significant for the ntSCI group (OR = 1.58; 95% CI: 1.09-2.29). No significant differences on health care cost and job loss between the group of relatives of SCI survivors and their controls were found, except for the relatives (n = 1604) of SCI survivors <18 years old, where a higher risk of job loss was found (OR = 1.43, 95% CI 0.97-2.1). CONCLUSION: These results emphasize that socioeconomic consequences for survivors of both tSCI and ntSCI are pervasive and long-lasting.

A taxonomy for consistent handling of conditions not related to the spinal cord injury (SCI) in the International Standards for Neurological Classification of SCI (ISNCSCI).

STUDY DESIGN: Committee consensus process including additional structured feedback from spinal cord injury (SCI) experts attending a focus group workshop. OBJECTIVES: To define a taxonomy for standardized documentation of non-SCI-related conditions in the International Standards for Neurological Classification of SCI (ISNCSCI). SETTING: Americal Spinal Injury Association (ASIA) International Standards Committee with 16 international ISNCSCI experts. METHODS: With the new taxonomy, not-normal sensory or motor scores should be tagged with an asterisk ("*"), if they are impacted by a non-SCI condition such as burns, casts, joint contractures, peripheral nerve injuries, amputations, pain, or generalized weakness. The non-SCI condition and instructions on how to handle the "*"-tagged scores during classification should be detailed in the comments box. While sum scores are always calculated based on examined scores, classification variables such as the neurological level of injury (NLI) or the ASIA Impairment Scale (AIS) grades are tagged with an "*", when they have been determined on the basis of clinical assumptions. RESULTS: With the extended "*"-tag concept, sensory and motor examination results impacted by non-SCI conditions above, at, or below the NLI can be consistently documented, scored, and classified. Feedback from workshop participants confirms agreement on its clinical relevance, logic and soundness, easiness of understanding, communicability, and applicability in daily work. CONCLUSIONS: After multiple internal revisions, a taxonomy for structured documentation of conditions superimposed on the impairments caused by the SCI together with guidelines for consistent scoring and classification was released with the 2019 ISNCSCI revision. This taxonomy is intended to increase the accuracy of ISNCSCI classifications.

Community dwelling life- and health issues among persons living with chronic spinal cord injury in North Macedonia.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: The purpose was to reveal late health consequences and life issues after a traumatic spinal cord injury (tSCI) in North Macedonia (NM). SETTING: Community dwelling adults with tSCI in NM. METHODS: Persons that sustained tSCI in 1999-2005 were selected, physical examined and a questionnaire was administered. Descriptive statistics were conducted. RESULTS: From 203 eligible persons, 40 agreed to participate. Mean (range) age at time of injury was 36 (27-75) years and time since injury ranged 9-20 years. Around seventy percent reported current health problems, of which pain and spasm (>60%) were most prevalent, followed by urinary tract infections and pressure injuries. About 30% had never been to a medical specialist and ≈70% had only once been to physiotherapy after discharge from the primary inpatient period. Only one participant had a fully adjusted home for a person with a disability. Those with most severe tSCI (American Spinal Injury Association Impairment Scale (AIS) A, B, and C) seldom left their homes. About 50% were retired and/or unemployed, 50% were working. CONCLUSION: This is the first study describing community-dwelling persons with a tSCI in NM. Our study revealed that persons with tSCI reported health issues mostly related to pain, spasms, urinary tract infections and pressure injuries. They lacked follow-ups, experienced physical barriers and poor inclusion in the society, and lacked financial support. Therefore, they were often socially isolated and fully dependent on their families. NM is in need of structured rehabilitation programs and better adaption for persons with reduced mobility.

An observational study on body mass index during rehabilitation and follow-up in people with spinal cord injury in Denmark.

STUDY DESIGN: Observational study OBJECTIVE: To describe body mass index (BMI) during rehabilitation in people with a newly sustained spinal cord injury (SCI). SETTING: Inpatient SCI rehabilitation in Denmark. PARTICIPANTS: Inpatients, >18 years, having sustained a SCI within the last 12 months at admission to primary rehabilitation, inclusive of various SCI etiology, neurological level, completeness of the lesion or mobility status. METHODS: Measures of BMI were obtained at admission and discharge as part of standard care. At one SCI center measures of BMI were sampled at follow up 9.5 months after discharge as well. BMI was described by mean and standard deviation (SD). Paired t-test was used to test difference in BMI between admission and discharge. Repeated measures Analysis of Variance (ANOVA) was used for analyzing BMI deriving from three time points. RESULTS: Overall BMI was stable with no change (25.4 kg/m2 at admission and 25.6 kg/m2 at discharge) during rehabilitation at the two national centers. In participants with an American Spinal Injury Association (ASIA) Impairment Scale (AIS) D classification, BMI was higher during rehabilitation compared to the other groups and increased significantly (p = 0.008) from discharge to follow up. CONCLUSIONS: Overall BMI was stable but higher than recommended in people with SCI undergoing rehabilitation at the two national centers in Denmark. Participants with an AIS D SCI were obese according to SCI adjusted BMI and the World Health Organization (WHO) recommendations during rehabilitation and at follow up.

An investigation into the validity and reliability of the Chinese version of Spinal Cord Independence Measure III (SCIM III).

OBJECTIVE: To investigate the validity and reliability of a Chinese version of Spinal Cord Independence Measure III (SCIM III) in individuals with spinal cord injury. DESIGN: Study on psychometric properties. SETTING: An inpatient rehabilitation facility in China. SUBJECTS: 102 participants with spinal cord injury. Mean (SD) age was 48.8 (15.6) years; tetraplegia/paraplegia ratio was 50/52; median time post injury was 2 months. INTERVENTION: SCIM III was translated into Chinese. Chinese versions of Barthel Index and SCIM III were filled out for each participant by Rater 1. SCIM III was then administered by Rater 2 after 24 hours (n = 67) and 7 days (n = 65). MAIN MEASURES: Validity, inter-rater/test-retest reliability, and internal consistency of the Chinese version of SCIM III. RESULTS: The total scores between the two raters were similar (mean ± SD: 33.8 ± 25.8 vs 33.8 ± 25.5, P = 0.95). Total agreement between the raters in each item was >80%, with both Pearson and intraclass correlation coefficients >0.97 (P < 0.01) for each subscale and total score. The Pearson correlation coefficients of the two independent assessments performed by Rater 2 were also >0.97 (P < 0.01) for each subscale and the total score. Cronbach α was >0.7 for each subscale and the total score for both raters. High consistency was found between Barthel Index and SCIM III total scores (Pearson correlation coefficient = 0.88, P < 0.01). CONCLUSION: The Chinese version of SCIM III is valid and reliable for the functional assessment of patients with SCI.

The test-retest reliability of individualized VO2peak test modalities in people with spinal cord injury undergoing rehabilitation.

STUDY DESIGN: Test-retest study. OBJECTIVE: To describe the test-retest reliability of an individualized approach for peak oxygen uptake (VO2peak) testing in a clinical context, accommodating inpatients with heterogeneous levels of physical functioning. SETTING: Inpatient rehabilitation. METHOD: Test-retest on two types of devices (recumbent stepper and arm-crank ergometer) with two predefined protocols of varying load increments on each device. No participants performed all four test modalities. VO2peak, respiratory exchange ratio (RER), peak workload, and the reason for termination were reported. Of 23 participants included, 21 completed the test-retest procedure. Participants were inpatients, ≥18 years, who sustained a spinal cord injury (SCI) within the last 12 months at the time of admission. The median age was 52 years and 74% were male. Median time since injury at the time of the first test (T1) was 5.5 months. Seventeen were classified as American Spinal Injury Association Impairment Scale D. Intraclass correlation coefficients (ICC) and Bland-Altman plots for VO2peak was calculated to determine intra- and intertester reliability of VO2peak. RESULTS: Mean VO2peak obtained at T1 was 1.91 L/min (95%CI: 1.31-2.51); 1.26 L/min and 2.69 L/min for the recumbent stepper protocols; 0.61 L/min and 1.39 L/min for the arm-crank ergometer protocols. ICC for intra- and intertester reliability was 0.997 (95%CI: 0.986-0.999) and 0.994 (95%CI: 0.978-0.998) respectively. Bland-Altman plots showed a mean difference of -0.005 (SD 0,12) for overall test-retest. CONCLUSION: Test-retest reliability was high. Mean VO2peak at discharge from rehabilitation was higher than previously reported and individualized test modalities seemed to yield more optimal results in a heterogenous and representative sample during rehabilitation.

Exploring the contextual transition from spinal cord injury rehabilitation to the home environment: a qualitative study.

STUDY DESIGN: Explorative qualitative study based on an interpretative phenomenological approach. OBJECTIVES: This study explored the possibility of transferring knowledge and skills from a spinal cord injury (SCI) unit to the home environment; the individual and structural factors that potentially influenced this transfer; and its compatibility with a meaningful everyday life. SETTING: Hospital-based rehabilitation unit and community in Denmark. METHODS: Fourteen individuals with SCI were selected with maximum variation according to age, sex, marital status, and level of injury. In-depth, semi-structured interviews were conducted in the participants' homes, 2-10 months after discharge from an SCI unit. Data analysis involved taking an interpretative phenomenological approach combined with a template analysis and applying the transfer of training theory to the discussion. RESULTS: Transitioning from the SCI unit to the home environment involved a multidimensional change of context in which most of the participants' previous life roles had changed. This overarching theme had a decisive influence on: balancing loss and acceptance, facing external structural barriers, and the strength of social relationships when the knowledge and skills acquired at the unit were applied in a meaningful everyday life. CONCLUSIONS: Transition from the SCI unit to the home environment is influenced by a multidimensional change of context that may restrict the use of acquired skills post-discharge, provide distant prospects for tertiary health promotion, and aggravate the experience of loss in people with SCI. Maintaining relationships is a strong mediator for transferring skills and re-establishing a meaningful everyday life.

The Danish Spinal Cord Injury Shoulder (DanSCIS) cohort: methodology and primary results.

STUDY DESIGN: Cross-sectional study. OBJECTIVES: To describe the socio-demographics, injury characteristics, prevalence of shoulder and neck symptoms, weekly participation in leisure time physical activity (LTPA) and quality of life (QoL) of individuals with spinal cord injury in Denmark (SCI). SETTING: Nation-wide community survey, Denmark. METHODS: Individuals with SCI for >2 years were included from three SCI rehabilitation departments. Questionnaire data regarding socio-demographic details, SCI injury characteristics, medical history, shoulder and neck symptoms, LTPA and QoL were collected. RESULTS: Of 2454 potential participants, 1517 (62%) responded to the survey (mean age = 56.2, SD 16.1, 37% female, 42% tetraplegia, 23% complete SCI, mean time since injury = 16.9, SD 13.5). 75% used some form of assistive mobility device. Responders and non-responders showed no sex or injury type/severity differences. Shoulder and neck symptoms within the past 3 months were reported by 63 and 67% respectively, with 51% reporting shoulder symptoms within the past week. Among those with symptoms, 61% had experienced shoulder symptoms and 56% neck symptoms, for more than 30 days during the previous 3 months. Symptoms often prevented participants from performing their usual activities (due to shoulder symptoms 46%, neck symptoms 41%). CONCLUSIONS: A high prevalence of self-reported shoulder and neck symptoms was found, which may limit physical function and social activities. We succeeded in generating the Danish Spinal Cord Injury Shoulder (DanSCIS) dataset, which comprised a substantial proportion of Danish adults with SCI. Future studies using data from this cohort will investigate patterns and associations between shoulder/neck symptoms, use of assistive mobility devices, LTPA and QoL.

The cost of providing a community-based model of care to people with spinal cord injury, and the healthcare costs and economic burden to households of spinal cord injury in Bangladesh.

DESIGN: Descriptive. SETTING: Community, Bangladesh. OBJECTIVES: To determine the costs associated with providing a community-based model of care delivered as part of the CIVIC trial to people discharged from hospital with recent spinal cord injury (SCI), and to determine the economic burden to households. METHODS: Records were kept of the costs of providing a community-based model of care to participants of the CIVIC trial. Data were also collected at discharge and 2 years post discharge to capture out-of-pocket healthcare costs over the preceding 2 years, and the number of participants suffering catastrophic health expenditure and illness-induced poverty. RESULTS: The mean cost of providing the community-based model of care to participants assigned to the intervention group (n = 204) was US$237 per participant. The mean out-of-pocket healthcare cost over the first 2 years post discharge was US$472 per participant (n = 410), and US$448 per control participant (n = 206). Median (IQR) equivalent annual household incomes prior to SCI and at 2 years post discharge were US$721 (US$452-1129) and US$464 (US$214-799), respectively. Of the 378 participants alive at 2 years, 324 (86%) had catastrophic health expenditure, and 161 of 212 participants who were not in poverty prior to injury (76%) were pushed into illness-induced poverty within 2 years of injury. CONCLUSION: The cost of providing community-based support to people with SCI for 2 years post discharge in Bangladesh is relatively inexpensive but an overwhelming majority of households rapidly experience financial catastrophe, and most fall into poverty.

A community-based intervention to prevent serious complications and death 2 years after discharge in people with spinal cord injury in Bangladesh (CIVIC): a randomised trial.

STUDY DESIGN: Randomised controlled trial. OBJECTIVES: To determine the effectiveness of a sustainable community-based intervention designed to prevent serious complications and death 2 years after discharge in people with spinal cord injury in Bangladesh. SETTING: Bangladesh. METHODS: A pragmatic randomised controlled trial was undertaken. People who had sustained a spinal cord injury in the preceding 2 years, were wheelchair-dependent, and were about to be discharged from hospital in Bangladesh were recruited and randomised to an Intervention or Control group using a concealed allocation procedure stratified by level of lesion (tetraplegia/paraplegia). Participants in the Intervention group received 36 phone calls and three home visits over the first 2 years following discharge. All participants received usual post-discharge care. Survival status and date of death were determined by blinded assessors 2 years after randomisation. RESULTS: Between July 2015 and March 2018, 410 participants were randomised (204 to Intervention, 206 to Control). There was no loss to follow up. At 2 years, 15 (7.4%) participants in the Intervention group and 16 (7.8%) participants in the Control group had died (hazard ratio from unadjusted Cox model = 0.93 [95% CI, 0.46 to 1.89]; p from log rank test 0.85). There were no clinically important or statistically significant average causal effects of intervention on the incidence or severity of complications. CONCLUSION: A program of community-based care for people with recent spinal cord injury in Bangladesh involving frequent phone contact and occasional in-person contact with a health professional after discharge from hospital is no better at preventing death at 2 years than usual care.

Differences in Acute Metabolic Responses to Bionic and Nonbionic Ambulation in Spinal Cord Injured Humans and Controls.

OBJECTIVES: To (1) compare energy expenditure during seated rest, standing, and prolonged bionic ambulation or bipedal ambulation in participants with spinal cord injury (SCI) and noninjured controls, respectively, and (2) test effects on postbionic ambulation glycemia in SCI. DESIGN: Two independent group comparison of SCI and controls. SETTING: Academic Medical Center. PARTICIPANTS: Ten participants with chronic SCI (C7-T1, American Spinal Injury Association Impairment Scale A-C) and 10 controls (N=20). INTERVENTIONS: A commercial bionic exoskeleton. MAIN OUTCOME MEASURES: Absolute and relative (to peak) oxygen consumption, perceived exertion, carbohydrate/fat oxidation, energy expenditure, and postbionic ambulation plasma glucose/insulin. RESULTS: Average work intensity accompanying 45 minutes of outdoor bionic ambulation was <40% peak oxygen consumption, with negligible drift after reaching steady state. Rating of perceived exertion (RPE) did not differ between groups and reflected low exertion. Absolute energy costs for bionic ambulation and nonbionic ambulation were not different between groups despite a 565% higher ambulation velocity in controls and 3.3× higher kilocalorie per meter in SCI. Fuel partitioning was similar between groups and the same within groups for carbohydrate and fat oxidation. Nonsignificant (9%) lowering of the area under a glucose tolerance curve following bionic ambulation required 20% less insulin than at rest. CONCLUSION: Work intensity during prolonged bionic ambulation for this bionic exoskeleton is below a threshold for cardiorespiratory conditioning but above seated rest and passive standing. Bionic ambulation metabolism is consistent with low RPE and unchanged fuel partitioning from seated rest. Bionic ambulation did not promote beneficial effects on glycemia in well-conditioned, euglycemic participants. These findings may differ in less fit individuals with SCI or those with impaired glucose tolerance. Observed trends favoring this benefit suggest they are worthy of testing.