Psychometric properties of the Danish version of the Caregiver Burden Scale: Investigating predictors and severity of burden after stroke, spinal cord injury, or traumatic brain injury.

OBJECTIVE: To investigate (i) psychometric properties of the Danish version of the Caregiver Burden Scale, (ii) predictors of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury, and (iii) severity of caregiver burden, and compare level of severity of burden in caregivers of persons with stroke, spinal cord injury, or traumatic brain injury. DESIGN: Cross-sectional study. PARTICIPANTS: Pooled sample of 122 caregivers. METHODS: Psychometric properties including internal consistency, floor and ceiling effects, inter-item and item-total correlation were investigated using the Caregiver Burden Scale. Severity of burden was compared using Fisher's exact test and ANOVA, and predictors of burden were investigated using multiple linear regression models. RESULTS: The total burden score exhibited good internal consistency (α = 0.93), with no floor or ceiling effects. Longer time as a caregiver was a significant predictor of higher total score. The majority (52.2%) reported a low level of caregiver burden (below cut-off of 2.00). Mean scores on the Caregiver Burden Scale were not significantly different among caregivers across diagnostic groups. Differences were found when comparing spinal cord injury caregivers with brain injury caregivers (traumatic brain injury and stroke, collectively), χ2(2) = 6.38, p = 0.04, as spinal cord injury caregivers were more likely to report low levels of burden. CONCLUSION: Good psychometric properties were reported, and most caregivers reported a low level of burden, and longer time as a caregiver was associated with higher burden. Consequently, the Caregiver Burden Scale is a valid measure to use when measuring burden in caregivers of stroke, spinal cord injury, and traumatic brain injury patients.

Translation and validation of the Chinese self-report version of Spinal Cord Independence Measure (SCIM-SR): Rasch psychometric analysis and online application.

Spinal Cord Independence Measure (SCIM) was an important functional outcome measure specifically designed for spinal cord injury (SCI) patients, with the self-reported version of SCIM (SCIM-SR) published in 2013. This study aims to translate the SCIM-SR into Chinese, and to investigate the validity of Chinese SCIM-SR among SCI patients. This Chinese version of SCIM-SR was translated into Chinese in a standardized approach, and then filled out by a sample of patients with SCI (n = 205) within 3 days after admission. Validity of Chinese SCIM-SR was then analyzed using Rasch analysis and principal component analysis. The subscale Selfcare and subscale Mobility showed good fit to the Rasch model, with no significance found in Chi-square test results for item-trait interaction, using Bonferroni adjustment for the significant level (χ2 =18.125, P = 0.111; χ2 =33.629, P = 0.006). Mean fit residual for items and persons of each subscale were within ± 2.5. The model fit of the subscale of Respiration and Sphincter Management was not satisfactory even after deleting one item and merging two items with local dependence. However, Kaiser-Meyer-Olkin test was > 0.50 in total score and all the subscales of Chinese SCIM-SR, and P < 0.05 in the Bartlett's test. There was no differential item functioning for gender, time post injury, age, and etiology in any of the three subscales. An online version of Chinese SCIM-SR was also developed. It is concluded that the SCIM-SR in Chinese is valid for application in individuals with SCI. SCIM-SR is considered as an important tool for self-reporting functional status from SCI individuals' perspective.

Defining malnutrition in persons with spinal cord injury - does the Global Criteria for Malnutrition work?

Background and aims: Physiologic and metabolic changes following spinal cord injury (SCI) lead to an increased risk of malnutrition. The Global Leadership Initiative on Malnutrition (GLIM) is a three-step approach to diagnose malnutrition: 1) screening; 2) phenotypic and etiological criteria; and 3) malnutrition severity. The main aim of this study was to assess malnutrition in patients with SCI, according to the GLIM criteria. Methods: Patients with SCI (≥ 18 years) admitted to rehabilitation were included. Anthropometrics, food intake, and inflammation were assessed on admission. Fat-free mass index (FFMI) was estimated from bioimpedance analysis. Malnutrition was diagnosed by the GLIM criteria, using the Malnutrition Universal Screening Tool (MUST) as the first step screening tool. Sensitivity and specificity analyses were performed. Results: In total, 66 patients were assessed (50 men) with a mean age of 51.4 (± 17.4) years and median time since injury was 37.5 (10-450) days. The mean body mass index was 24.7 (± 4.2) kg/m2, and 1-month involuntary weight loss was 5.7 (± 4.4)%. FFMI for men was 17.3 (± 1.9) and for women 15.3 (± 1.6) kg/m2. Forty-one patients (62%) were malnourished according to the GLIM criteria: 27 moderately and 14 severely malnourished. MUST was not able to detect malnutrition risk of nine patients, giving a moderate agreement (kappa 0.66), with a sensitivity of 0.78 and a specificity of 0.92 compared to the GLIM diagnosis. Conclusions: In this cross-sectional study, 62% of subacute SCI patients were malnourished according to the GLIM criteria. The screening tool MUST showed moderate agreement with the GLIM criteria and did not detect risk of all patients with a malnutrition diagnosis. The clinical implications of these findings need further investigation.

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.

Factors associated with urinary tract infection in the early phase after performing intermittent catheterization in individuals with spinal cord injury: a retrospective study.

Objectives: To investigate the occurrence rate of urinary tract infections (UTIs) in the early phase after performing intermittent catheterization (IC) and to explore the possible factors associated with UTIs after performing IC among people with spinal cord injury (SCI). Setting: An inpatient rehabilitation department of a teaching hospital in China. Design: Retrospective chart review. Methods: A retrospective chart review was carried out for traumatic and non-traumatic SCI patients after performing IC during their inpatient stay. Demographic information, comorbidity of diabetes, urine analysis results before IC, method of IC (sterile or clean), use of bladder irrigation, cessation of IC and its reasons, and UTI events were collected. Results: A total of 183 adult individuals were included, of which 60 (32.8%) of them were women. The median age was 49.0 years. The median time post-injury was 2 months. The overall occurrence rate of UTI after performing IC was 1.31 (95% confidence intervals: 0.96-1.77) events per 100 days. Sixty-nine (37.7%) patients discontinued IC during hospitalization, and UTIs were the leading reason for cessation (50.7%). Female sex, use of antibiotics for infections other than UTI, and use of bladder irrigation were found to be associated with a lower occurrence rate of UTI in the early phase after performing IC, with an odds ratio of 0.38 (p = 0.019), 0.20 (p = 0.022), and 0.24 (p < 0.001), respectively. Conclusion: UTI after performing IC is prevalent among people with SCI. The study indicated that antibiotic prophylaxis and routine bladder irrigation might be associated with the reduction in UTI in the early phase after performing IC. Further research is needed to provide more evidence.

A manual-based family intervention for families living with acquired brain or spinal cord injury: a qualitative study of families' experiences.

PURPOSE: To explore families' experiences of participating in a family intervention, targeting families living with the consequences of acquired brain injury (ABI) or spinal cord injury (SCI). MATERIALS AND METHODS: Individuals with ABI or SCI and their family members were recruited from a randomised controlled trial investigating the effectiveness of the manual-based family intervention, which consisted of eight weekly sessions. Semi-structured interviews were conducted with 16 families (n = 33). The data were analyzed through reflexive thematic analysis. RESULTS: One central theme was developed "A sense of belonging together again", describing the value of the reciprocal format of the family intervention, where individuals with ABI or SCI and their family members gained new insights into each other while building up their relationship. The central theme was supported by three additional themes: "Strengthened communication and emotional control", "Acknowledging the changed life situation" and "Being seen as a whole person". CONCLUSIONS: The family intervention supported the families to strengthen family cohesion and to be capable to manage the changed life situation. The findings emphasize the importance of a family-centered approach in neurorehabilitation, and how healthcare professionals play a significant role in facilitating families to achieve a balanced level of family cohesion.

Acquiring an injury to the brain or spinal cord constitutes a severe life change for the entire family and therefore a family-centered approach in neurorehabilitation is crucial.As individuals with injury and their family members often feel disconnected during rehabilitation, healthcare professionals play a significant role in facilitating the family to share their experiences with each other to strengthen family cohesion.Not all families are aware of their need for support. Thus, healthcare professionals should pay particular attention to identify the individual family's needs for being supported.During conversations with families, healthcare professionals should focus on the balance between separateness and togetherness in the family system to support the families in achieving a balanced level of family cohesion.

Cannabis-Based Medicine for Neuropathic Pain and Spasticity-A Multicenter, Randomized, Double-Blinded, Placebo-Controlled Trial.

Patients with multiple sclerosis (MS) and spinal cord injury (SCI) commonly sustain central neuropathic pain (NP) and spasticity. Despite a lack of consistent evidence, cannabis-based medicine (CBM) has been suggested as a supplement treatment. We aimed to investigate the effect of CBM on NP and spasticity in patients with MS or SCI. We performed a randomized, double-blinded, placebo-controlled trial in Denmark. Patients aged ≥18 years with NP (intensity >3, ≤9 on a numerical rating scale (NRS0-10) and/or spasticity (>3 on NRS0-10) were randomized to treatment consisting of either delta-9-tetrahydrocannabinol (THC), cannabidiol (CBD), a combination of THC&CBD in maximum doses of 22.5 mg, 45 mg and 22.5/45 mg per day, respectively, or placebo. A baseline registration was performed before randomization. Treatment duration was six weeks followed by a one-week phaseout. Primary endpoints were the intensity of patient-reported NP and/or spasticity. Between February 2019 and December 2021, 134 patients were randomized (MS n = 119, SCI n = 15), where 32 were assigned to THC, 31 to CBD, 31 to THC&CBD, and 40 to placebo. No significant difference was found for: mean pain intensity (THC 0.42 (-0.54-1.38), CBD 0.45 (-0.47-1.38) and THC&CBD 0.16 (-0.75-1.08)), mean spasticity intensity (THC 0.24 (-0.67-1.45), CBD 0.46 (-0.74-1.65), and THC&CBD 0.10 (-1.18-1.39), secondary outcomes (patient global impression of change and quality of life), or any tertiary outcomes. We aimed to include 448 patients in the trial; however, due to COVID-19 and recruitment challenges, fewer were included. Nevertheless, in this four-arm parallel trial, no effect was found between placebo and active treatment with THC or CBD alone or in combination on NP or spasticity in patients with either MS or SCI. The trial was registered with the EU Clinical Trials Register EudraCT (2018-002315-98).

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.

Investigating the Effectiveness of a Family Intervention after Acquired Brain or Spinal Cord Injury: A Randomized Controlled Trial.

(1) Background: Acquired brain injury (ABI) or spinal cord injury (SCI) constitutes a severe life change for the entire family, often resulting in decreased quality of life (QoL) and increased caregiver burden. The objective of this study was to investigate the effectiveness of a family intervention in individuals with ABI or SCI and in their family members. (2) Methods: An RCT of a family intervention group (FIG) vs. a psychoeducational group (PEG) (ratio 1:1) was performed. The FIG received an eight-week manual-based family intervention, and the PEG received one psychoeducational session. Self-reported questionnaires on QoL with the Mental Component Summary (MCS) and on caregiver burden with the Caregiver Burden Scale (CBS) were the primary outcomes. The data analysis involved linear mixed-effects regression models. (3) Results: In total, 74 participants were allocated randomly to the FIG and 84 were allocated randomly to the PEG. The FIG had significantly larger improvements on the MCS and significantly larger reductions on the CBS at the two-month follow-up than participants in the PEG (mean differences of 5.64 points on the MCS and -0.26 points on the CBS). At the eight-month follow-up, the between-group difference remained significant (mean difference of 4.59 points) on the MCS, whereas that on the CBS was borderline significant (mean change of -0.14 points). (4) Conclusions: Family intervention was superior to psychoeducation, with larger improvements in QoL and larger reductions in caregiver burden.

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.

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.

A multi-center international study on the spinal cord independence measure, version IV: Rasch psychometric validation.

CONTEXT: The Spinal Cord Independence Measure is a comprehensive functional rating scale for individuals with spinal cord lesion (SCL). OBJECTIVE: To validate the scores of the three subscales of SCIM IV, the fourth version of SCIM, using advanced statistical methods. STUDY DESIGN: Multi-center cohort study. SETTING: Nineteen SCL units in 11 countries. METHODS: SCIM developers created SCIM IV following comments by experts, included more accurate definitions of scoring criteria in the SCIM IV form, and adjusted it to assess specific conditions or situations that the third version, SCIM III, does not address. Professional staff members assessed 648 SCL inpatients, using SCIM IV and SCIM III, at admission to rehabilitation, and at discharge. The authors examined the validity and reliability of SCIM IV subscale scores using Rasch analysis. RESULTS: The study included inpatients aged 16-87 years old. SCIM IV subscale scores fit the Rasch model. All item infit and most item outfit mean-square indices were below 1.4; statistically distinct strata of abilities were 2.6-6; most categories were properly ordered; item hierarchy was stable across most clinical subgroups and countries. In a few items, however, we found misfit or category threshold disordering. We found SCIM III and SCIM IV Rasch properties to be comparable. CONCLUSIONS: Rasch analysis suggests that the scores of each SCIM IV subscale are reliable and valid. This reinforces the justification for using SCIM IV in clinical practice and research.

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.

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.

3D synchrotron imaging of muscle tissues at different atrophic stages in stroke and spinal cord injury: a proof-of-concept study.

Synchrotron X-ray computed tomography (SXCT) allows 3D imaging of tissue with a very large field of view and an excellent micron resolution and enables the investigation of muscle fiber atrophy in 3D. The study aimed to explore the 3D micro-architecture of healthy skeletal muscle fibers and muscle fibers at different stages of atrophy (stroke sample = muscle atrophy; spinal cord injury (SCI) sample = severe muscle atrophy). Three muscle samples: a healthy control sample; a stroke sample (atrophic sample), and an SCI sample (severe atrophic sample) were imaged using SXCT, and muscle fiber populations were segmented and quantified for microarchitecture and morphology differences. The volume fraction of muscle fibers was 74.7%, 70.2%, and 35.3% in the healthy, stroke (atrophic), and SCI (severe atrophic) muscle fiber population samples respectively. In the SCI (severe atrophic sample), 3D image analysis revealed fiber splitting and fiber swelling. In the stroke sample (atrophic sample) muscle fiber buckling was observed but was only visible in the 3D analysis. 3D muscle fiber population analysis revealed new insights into the different stages of muscle fiber atrophy not to be observed nor quantified with a 2D histological analysis including fiber buckling, loss of fibers and fiber splitting.

Caregiving, Participation, and Quality of Life of Closest Next of Kin of Persons Living with Spinal Cord Injury in Norway.

OBJECTIVES: To investigate how next of kin of persons with spinal cord injury (SCI) experience various life areas in terms of caregiving, participation, and quality of life, and the impact of personal characteristics of next of kin and SCI characteristics. DESIGN: Survey of next of kin linked to data on persons with SCI in the Norwegian SCI Registry. PARTICIPANTS: A total of 73 next of kin identified by persons with SCI. METHODS: Outcome measures were caregiving (4 measures), participation (1 measure), and quality of life (2 measures). RESULTS: Participants (73% partners, 73% female, mean age 56.4 years) gave various support to the person with SCI and considered it important to care and were happy to do so. Three-quarters of participants reported good mental health and life satisfaction, while one-quarter reported high levels of caregiver strain, especially related to emotional adjustments. Higher levels of caregiver strain were reported by participants of working age (< 67 years), and by those with middle level education. CONCLUSION: The majority of next of kin of persons living with SCI in Norway are doing well in most life areas. Caregiver strain may be reduced by strengthening the ability of next of kin to cope with emotional challenges.

Evaluation of the International Spinal Cord Injury Bowel Function Basic Data Set Version 2.0 in Children and Youth With Spinal Cord Injury.

OBJECTIVES: To establish the utility and feasibility of the International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 in pediatric SCI populations. METHODS: This was a noninterventional, repeated measure design conducted in Pennsylvania, Maryland, Illinois, Kentucky, and South Carolina. The International Spinal Cord Injury/Dysfunction (SCI/D) Bowel Function Basic Data Set Version 2.0 was administered repeatedly, twice at the point of care and once over the phone. Time to complete the data set was recorded. Inter- and intrarater reliability was examined by intraclass correlation coefficients (ICC) with 95% confidence intervals (CI), and agreement between the bowel function basic data set variables and medical records was calculated using percentages. Intrarater reliability involved the same person administering the data once at the point of care and once over the phone. RESULTS: Forty-one children/youth ages 1 to 20 years participated in this study. Average time to complete the data set was 5.17 minutes. Interrater reliability was good to excellent (ICC ≥ 0.75) for most variables. Five variables had moderate interrater reliability (ICC = 0.05-0.74) and three had poor interrater reliability (ICC < 0.05). With the exception of one variable that had poor intrarater reliability (constipating agent, ICC = 0.00) and one that approached moderate reliability (digital evacuation, ICC = 0.74), intrarater reliability was good to strong for every bowel variable (ICC = 0.88-1.00). Only 12 (32%) medical records had explicit documentation of one or more of the variables on the Basic Bowel Function Basic Data Set V2.0. CONCLUSION: The results support future research with a larger and more diverse sample of children with SCI to build upon the psychometric work described herein.

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.