Development and Testing of the Spinal Cord Injury Bladder and Bowel Control Questionnaire (SCI-BBC-Q).

INTRODUCTION: Recovery of lower urinary tract (LUT) and lower gastrointestinal tract (LGIT) is a high priority for people with lived experience following spinal cord injury (SCI). A universally accepted validated patient-reported outcome (PRO) measure of the individual sensory and motor components of LGIT and LUT function, which allows tracking of recovery is lacking. To address this literature gap, the SCI Bladder and Bowel Control Questionnaire (SCI-BBC-Q) was developed. METHODS: The SCI-BBC-Q was developed as a direct assessment of the micturition and defecation experiences of an individual with SCI with possible neurogenic LUT and LGIT dysfunction. The SCI-BBC-Q development process consisted of two phases, measure development and evaluation. Measure development was guided by a conceptual framework, review of existing instruments and literature, and an iterative process of item incorporation, review, feedback, and consensus revision. Evaluation included cognitive interviewing, and assessments of feasibility, reliability, and content validity. RESULTS: The final 6-item SCI-BBC-Q is a PRO, which assesses motor and sensory function related to micturition and defecation, requiring ~5 min to complete. Assessments of clarity of the instrument components with regard to understanding of what is being asked in the questionnaire, feasibility of administration, reliability, internal consistency, and agreement with proxy measures have demonstrated that the SCI-BBC-Q provides consistent, stable, and reproducible data. Significant correlations were found between SCI-BBC-Q scores and the anorectal motor and sensory components of the International Standards for the Neurological Classification of SCI. CONCLUSION: The SCI-BBC-Q is a practical and reliable method for baseline and ongoing evaluation of patients with neurogenic LUT and LGIT dysfunction, especially in the acute and subacute period when function is changing due to neurological plasticity. It is also appropriate for use in monitoring response to treatments related to neurological recovery.

Wheelchair Repairs: Delays, Causes, and Associated Outcomes.

OBJECTIVE: To examine the length of time to complete wheelchair repairs and the relationship between negative outcomes and the factors that prevented or determined who performed repairs. DESIGN: Survey, cross-sectional. SETTING: Nine spinal cord injury (SCI) Model Systems Centers. PARTICIPANTS: Wheelchair users with SCI reporting at least 1 repair (N=301) INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: Prevalence of adverse consequences associated with wheelchair repairs, repairs completed of those needed, and time elapsed before wheelchair repair. RESULTS: 76% of participants reported all necessary repairs were completed, while 7% indicated that some repairs were addressed, and 14% reported none of the repairs being completed. The most common reason for incomplete repairs (30%) was the vendor's failure to complete the repair after being contacted. Among the repairs that were successfully completed, 56% were performed by vendors. The median time elapsed before repair was 14 days, with no significant difference observed in the time taken for repairs across different components. The most common consequences were being forced to use a backup wheelchair or being confined at home. A greater percentage of participants experienced each type of consequence, except injury, for repairs completed by vendors. CONCLUSIONS: The high percentage of uncompleted wheelchair repairs poses a significant risk to users, and this risk is compounded by prolonged time taken by vendors to address breakdowns. Unsatisfactory vendor service was common, with a significantly larger proportion of participants experiencing consequences for repairs that required a vendor. This seems to indicate structural inadequacies within the repair process and the need for interventions to address these issues.

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.

Who Moves After SCI? Individual, Health, and Neighborhood Predictors of Residential Mobility Among Participants in the National Spinal Cord Injury Model Systems Database.

OBJECTIVE: To investigate residential mobility among community-living adults with spinal cord injury (SCI) and the individual, health, and neighborhood factors associated with the propensity to relocate. DESIGN: Retrospective analysis of data from the National SCI Model Systems (SCIMS) Database collected between 2006 and 2018 and linked with the American Community Survey 5-year estimates. SETTING: Community. INTERVENTIONS: Not applicable. PARTICIPANTS: People with traumatic SCI (N=4599) who participated in 2 waves of follow-up and had residential geographic identifiers at the census tract level. MAIN OUTCOME MEASURES: Moving was a binary measure reflecting change in residential locations over a 5-year interval. Move distance distinguished nonmovers from local movers (different tracts within the same county) and long-distance movers (to different county or state). Move quality included 4 categories: stayed/low poverty tract, stayed/high poverty tract, moved/low poverty tract, and moved/high poverty tract. RESULTS: One in 4 people moved within a 5-year interval (n=1175). Of the movers, 55% relocated to a different census tract within the same county and 45% relocated to a different county or state. Thirty-five percent of all movers relocated to a high poverty census tract. Racial and ethnic minorities, people from low-income households, and younger adults were more likely to move, move locally, and relocate to a high poverty neighborhood. High poverty and racial/ethnic segregation in the origin neighborhood predicted an increased risk for remaining in or moving to a high poverty neighborhood. CONCLUSIONS: Although people with SCI relocated at a lower rate than has been reported in the general population, moving was a frequent occurrence postinjury. People from vulnerable groups were more likely to remain in or relocate to socioeconomically disadvantaged neighborhoods, thus increasing the risk for health disparities and poorer long-term outcomes among minorities and people from low-income households. These findings inform policy makers' considerations of housing, health care, and employment initiatives for individuals with SCI and other chronic disabilities.

Prevalence and Impact of Neuropathic and Nonneuropathic Pain in Chronic Spinal Cord Injury.

OBJECTIVE: To compare prevalence, intensity ratings, and interference ratings of neuropathic pain (NeuP) and nociceptive pain in people with chronic spinal cord injury (SCI) DESIGN: Cross-sectional survey. SETTING: Six SCI Model System centers in the United States. PARTICIPANTS: Convenience sample of 391 individuals (N=391) with traumatic SCI, 18 years or older, 81% male, 57% White. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Survey based on the International Spinal Cord Injury Pain Basic Data Set and the Spinal Cord Injury Pain Instrument, including 0-10 numeric ratings of pain intensity and pain interference with daily activities, mood, and sleep RESULTS: A total of 80% of those surveyed reported having at least 1 pain problem; 58% reported 2 or more pain problems; 56% had probable NeuP; and 49% had non-NeuP. When comparing ratings for all pains (n=354 for NeuP, n=290 for non-NeuP) across participants, probable NeuPs were significantly more intense (6.9 vs 5.7) and interfered more with activities (5.2 vs 3.7), mood (4.9 vs 3.2), and sleep (5.4 vs 3.6) than non-NeuPs (all P<.001). However, when comparing ratings for probable NeuPs and non-NeuPs within participants, for the subgroup of 94 participants with both pain types, only ratings for sleep interference were found to be significantly different between the pain types. Additionally, we found significantly greater prevalence of NeuP and non-NeuP for women compared with men and of NeuP for those with paraplegia compared with those with tetraplegia. CONCLUSIONS: Independent assessment of the pain conditions experienced by an individual with SCI is useful in understanding the differential effect that pain type has on quality of life. This is particularly important regarding sleep interference and should be kept in mind when determining treatment strategies for meeting patient-centered outcome goals.

Utilization of Complementary and Integrative Health Care by People With Spinal Cord Injury in the Spinal Cord Injury Model Systems: A Descriptive Study.

OBJECTIVE: To characterize the use of complementary and integrative health care (CIH) by people with spinal cord injury. DESIGN: Cross-sectional self-report study. SETTING: Participants were recruited from 5 Spinal Cord Injury Model Systems (SCIMS) centers across the United States. INTERVENTIONS: Not applicable. PARTICIPANTS: A total of 411 persons enrolled in the SCIMS completing their SCIMS follow-up interview between January 2017 and July 2019 (N = 411). MAIN OUTCOME MEASURES: Participants completed a survey developed for this study that included questions about types of CIH currently and previously used, reasons for current and previous use, reasons for discontinuing use of CIH, and reasons for never using CIH since injury. RESULTS: Of the 411 respondents, 80.3% were current or previous users of CIH; 19.7% had not used CIH since injury. The most commonly used current types of CIH were multivitamins (40.0%) and massage (32.6%), whereas the most common previously used type of CIH was acupuncture (33.9%). General health and wellness (61.4%) and pain (31.2%) were the most common reasons for using CIH. The primary reason for discontinuing CIH was that it was not helpful (42.1%). The primary reason for not using CIH since injury was not knowing what options are available (40.7%). CONCLUSIONS: These results point to the importance for rehabilitation clinicians to be aware that their patients may be using 1 or more CIH approaches. Providers should be open to starting a dialogue to ensure the health and safety of their patients because there is limited information on safety and efficacy of CIH approaches in this population. These results also set the stage for further analysis of this data set to increase our knowledge in this area.

The CanPain SCI clinical practice guidelines for rehabilitation management of neuropathic pain after spinal cord injury: 2021 update.

STUDY DESIGN: Clinical practice guidelines. OBJECTIVES: The objective was to update the 2016 version of the Canadian clinical practice guidelines for the management of neuropathic pain in people with spinal cord injury (SCI). SETTING: The guidelines are relevant for inpatient, outpatient and community SCI rehabilitation settings in Canada. METHODS: The guidelines were updated in accordance with the Appraisal of Guidelines for Research and Evaluation II tool. A Steering Committee and Working Group reviewed the relevant evidence on neuropathic pain management (encompassing screening and diagnosis, treatment and models of care) after SCI. The quality of evidence was scored using Grading of Recommendations Assessment, Development and Evaluation (GRADE). A consensus process was followed to achieve agreement on recommendations and clinical considerations. RESULTS: The working group identified and reviewed 46 additional relevant articles published since the last version of the guidelines. The panel agreed on 3 new screening and diagnosis recommendations and 8 new treatment recommendations. Two key changes to these treatment recommendations included the introduction of general treatment principles and a new treatment recommendation classification system. No new recommendations to model of care were made. CONCLUSIONS: The CanPainSCI recommendations for the management of neuropathic pain after SCI should be used to inform practice.

Treatments that are perceived to be helpful for non-neuropathic pain after traumatic spinal cord injury: a multicenter cross-sectional survey.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: The objective of the study was to identify the treatments that people with traumatic spinal cord injury (SCI) used for their non-neuropathic pains (nonNeuPs) and how they subjectively rated the helpfulness of those treatments. SETTING: Six centers from the Spinal Cord Injury Model Systems. METHODS: Three hundred ninety one individuals who were at least 1-year post-traumatic SCI were enrolled. A telephone survey was conducted for pharmacologic and non-pharmacologic treatments utilized in the last 12 months for each participant's three worst pains and the perceived helpfulness of each treatment for each pain. RESULTS: One hundred ninety (49%) participants reported at least one nonNeuP (Spinal Cord Injury Pain Instrument score < 2) in the previous 7 days. NSAIDs/aspirin, acetaminophen, opioids, and cannabinoids were the most commonly used and helpful pharmacologic treatments for overall nonNeuP locations (helpful in 77-89% of treated pains). Body position adjustment, passive exercise, massage, resistive exercise, and heat therapy were reported as the most commonly used non-pharmacological treatments for nonNeuPs. Heat therapy, aerobic exercise, massage, and body position adjustment were the most helpful non-pharmacological treatments for overall nonNeuP locations (helpful in 71-80% of treated pains). Perceived helpfulness of treatments varied by pain locations, which may be due to different mechanisms underlying pains in different locations. CONCLUSIONS: Results of the study may help guide clinicians in selecting pain-specific treatments for nonNeuPs. The self-reported helpfulness of heat therapy, exercise, and massage suggests a possible direction for clinical trials investigating these treatments of nonNeuP while limiting the side effects accompanying pharmacologic treatments.

Exoskeletal-Assisted Walking During Acute Inpatient Rehabilitation Leads to Motor and Functional Improvement in Persons With Spinal Cord Injury: A Pilot Study.

OBJECTIVE: To explore the potential effects of incorporating exoskeletal-assisted walking (EAW) into spinal cord injury (SCI) acute inpatient rehabilitation (AIR) on facilitating functional and motor recovery when compared with standard of care AIR. DESIGN: A quasi-experimental design with a prospective intervention group (AIR with EAW) and a retrospective control group (AIR only). SETTING: SCI AIR facility. PARTICIPANTS: Ten acute inpatient participants with SCI who were eligible for locomotor training were recruited in the intervention group. Twenty inpatients with SCI were identified as matched controls by reviewing an AIR database, Uniform Data System for Medical Rehabilitation, by an individual blinded to the study. Both groups (N=30) were matched based on etiology, paraplegia/tetraplegia, completeness of injury, age, and sex. INTERVENTION: EAW incorporated into SCI AIR. MAIN OUTCOME MEASURES: FIM score, International Standards for Neurological Classification of Spinal Cord Injury Upper Extremity Motor Score and Lower Extremity Motor Scores (LEMS), and EAW session results, including adverse events, walking time, and steps. RESULTS: Changes from admission to discharge LEMS and FIM scores were significantly greater in the intervention group (LEMS change: 14.3±10.1; FIM change: 37.8±10.8) compared with the control group (LEMS change: 4.6±6.1; FIM change: 26.5±14.3; Mann-Whitney U tests: LEMS, P<.01 and FIM, P<.05). One adverse event (minor skin abrasion) occurred during 42 walking sessions. Participants on average achieved 31.5 minutes of up time and 18.2 minutes of walk time with 456 steps in one EAW session. CONCLUSIONS: Incorporation of EAW into standard of care AIR is possible. AIR with incorporated EAW has the potential to facilitate functional and motor recovery compared with AIR without EAW.

An interview based approach to the anorectal portion of the International Standards of Neurological Classification of Spinal Cord Injury Exam (I-A-ISNCSCI): a pilot study.

STUDY DESIGN: Prospective, single-blinded study. OBJECTIVE: To design and evaluate the use of an interview based version of the anorectal portion of the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) exam in the acute inpatient rehabilitation (AIR) setting. SETTING: AIR unit. METHODS: Participants admitted to AIR underwent standard ISNCSCI exams (S-ISNCSCI) as part of routine inpatient care within 3 days of being administered an interview version of the anorectal portion of the ISNCSCI (I-A-ISNCSCI). Agreement between the anorectal portion of the S-ISNCSCI (S-A-ISNCSCI) and the I-A-ISNCSCI was evaluated. RESULTS: Forty of forty-five enrolled participants completed the assessments. Agreement between the I-A-ISNCSCI and S-A-ISNCSCI was substantial for anorectal sensation to light touch (k = 0.71, 95% CI 0.52-0.90, N = 36), pin prick (k = 0.68, 95% CI 0.48-0.87, N = 38), deep anal pressure (k = 0.77, 95% CI 0.53-1.00, N = 37), and completeness of injury based on combined sacral sensory criteria (k = 0.72, 95% CI 0.47-0.97, N = 40); and fair for voluntary anal contraction (k = 0.29, 95% CI -0.01 to 0.59, N = 36). Responses of "I don't know" were excluded from agreement analyses. CONCLUSIONS: This pilot study was a first step in developing interview based tools such as the I-A-ISNCSCI in an AIR setting providing convenient access to individuals with SCI and their direct feedback. The study design introduces potential recall bias and may not match true clinical situations such as remote follow-up of neurological changes for chronic patients. The use of interview based tools for assessing individuals with SCI remains worthy of further study.

Health care resource utilization and medical costs of spinal cord injury with neuropathic pain in a commercially insured population in the United States.

OBJECTIVE: To evaluate health care resource use, costs, and cost drivers among patients with neuropathic pain (NeP) after spinal cord injury (SCI) in a commercially insured population. DESIGN: Retrospective longitudinal cohort study comparing SCI patients with and without NeP. SETTING: Truven Health MarketScan commercial claims database from 2005 through 2012. PARTICIPANTS: Commercially insured SCI patients with NeP (n=3524) propensity score matched to SCI patients without NeP (n=3524). INTERVENTIONS: Not applicable. MAIN OUTCOMES MEASURES: Health care resource utilization and expenditures for the 12 months after NeP onset (index event; identified through International Classification of Diseases, 9th Revision, Clinical Modification diagnosis 338.0x or use of NeP-specific antiepileptic drugs or NeP-specific antidepressants) in patients with SCI compared with matched patients without NeP. RESULTS: Utilization over 12 months postindex among patients with SCI-associated NeP was higher than among SCI-only patients for inpatient admissions (27.4% vs 22.1%), emergency department visits (36.7% vs 26.4%), and office visits per patient (mean ± SD: 13.0±9.5 vs 9.5±8.3); all P values were <.001. All-cause expenditures showed adjusted incremental costs of $22,545 (95% confidence interval, $19,010-$26,168) per patient with SCI-associated NeP during the 12-month postindex period. CONCLUSIONS: Patients with evidence of NeP secondary to SCI have significantly higher health care utilization and total costs compared with SCI patients without evidence of NeP. Factors contributing to NeP in patients with SCI need to be clinically assessed to determine the optimal approach for treating these individuals.

Exoskeletal-Assisted Walking During Acute Inpatient Rehabilitation Enhances Recovery for Persons with Spinal Cord Injury-A Pilot Randomized Controlled Trial.

Spinal cord injury (SCI) negatively impacts individuals' functional independence, and motor and sensory function. Intense walking training has been shown to facilitate recovery for individuals with chronic SCI. Powered robotic exoskeletons provide therapists with a tool that allows them to conduct walking training with less therapist effort as compared to conventional walking training. Exoskeletal-assisted walking (EAW) has been studied in the chronic SCI population with preliminary reports showing benefits in mobility, health, and quality-of-life outcomes. However, few reports have studied EAW's benefits in the acute (<90 days post) SCI population at a time when neural plasticity is most dynamic and modifiable. The purpose of the study was to conduct a pilot randomized controlled trial (RCT) to understand the effects of incorporated EAW in acute inpatient rehabilitation (AIR) for individuals with SCI on functional, motor, and sensory recovery. The study outcomes included the Spinal Cord Independence Measure (SCIM) III and International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) motor and sensory scores that were assessed by unblinded assessors. We also recorded EAW session data, including adverse events, walking and up time, step counts, Borg Rating of Perceived Exertion (RPE), and compliance with scheduled EAW training. From August 2019 to July 2022, 16 participants completed the AIR with incorporated EAW, and 12 completed the standard AIR, all with SCI and preserved leg function within 90 days post-injury. During each session, the AIR with incorporated EAW group averaged 34.3 (±9.4) min of up time, 25.4 (±7.7) min of walk time, and 536 (±157) steps. Analysis via two-by-two mixed-effects models showed significant increases in the SCIM total score and ISNCSCI total motor and sensory scores over time for the AIR with incorporated EAW group [SCIM total score: F(1, 26) = 5.59, p = 0.03; total motor score: F(1, 26) = 8.06, p < 0.01; total sensory score: F(1, 19.2) = 5.08, p = 0.04], outperforming the standard AIR group. The AIR with incorporated EAW group showed 13, 14, and 22 points higher changes in the SCIM total score, total motor score, and total sensory score (respectively) by discharge compared with the standard AIR group. Incorporating EAW into AIR may facilitate functional, motor, and sensory recovery for individuals with SCI during AIR better than standard AIR. However, the study had a limited sample size. Further studies are needed to clarify the effects of EAW in AIR.

Treatment of Orthostatic Hypotension During Acute Inpatient Rehabilitation After Spinal Cord Injury: Usual Care vs. Anti-hypotensive Therapy.

BACKGROUND: To compare the pharmacological treatment of hypotension and orthostatic hypotension (OH) initiated based upon a blood pressure (BP) threshold, regardless of symptoms (TXT), to usual care pharmacological treatment of symptomatic hypotension (UC), during acute inpatient rehabilitation (AIR) following spinal cord injury (SCI). METHODS: Block randomization, based on the neurological level of injury as: cervical lesions (C1-C8); high thoracic lesions (T1-T5), and low thoracic lesions (T6-T12), was used to determine responses to the primary question "was the therapy session affected by low BP or concern for low BP development?" Study participants and therapists were unaware of the group assignment. RESULTS: A total of 66 participants enrolled; 25 (38%) in the TXT group, 29 (44%) in the UC group, and 12 (18%) withdrew. Responses to the primary question were recorded for 32 participants, 15 in the TXT, and 17 in the UC group. There was an average of 81 ±â€…51 therapy sessions/participant in the TXT and 60 ±â€…27 sessions/participant in the UC group. Of those therapy sessions, low BP or concerns for low BP affected an average of 9 ±â€…8 sessions/participant in the TXT group and 10 ±â€…12 sessions/participant in the UC group. Neither the total number of therapy sessions (P = 0.16) nor group assignment (P = 0.83) significantly predicted the number of sessions affected by low BP. CONCLUSIONS: These data are not conclusive but indicate that the treatment of asymptomatic hypotension and OH does not increase time spent in therapy compared to UC treatment of symptomatic hypotension and OH in newly injured patients with SCI. CLINICAL TRIALS REGISTRATION: #NCT02919917.

Health impacts reported in the Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES).

CONTEXT: In people with spinal cord injury (SCI), infections are a leading cause of death, and there is a high prevalence of diabetes mellitus, obesity, and hypertension, which are all comorbidities associated with worse outcomes after COVID-19 infection. OBJECTIVE: To characterize self-reported health impacts of COVID-19 on people with SCI related to exposure to virus, diagnosis, symptoms, complications of infection, and vaccination. METHODS: The Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES) study was administered to ask people with SCI about their health and other experiences during the COVID-19 pandemic. RESULTS: 223 community-living people with SCI (male = 71%; age = 52±15 years [mean±SD]; paraplegia = 55%) completed the SCI-CPES. Comorbidities first identified in the general population as associated with poor outcomes after COVID-19 infection were commonly reported in this SCI sample: hypertension (30%) and diabetes (13%). 23.5% of respondents reported a known infection exposure from someone who visited (13.5%) or lived in their home (10%). During the study, which included a timeframe when testing was either unavailable or scarce, 61% of respondents were tested for COVID-19; 14% tested or were presumed positive. Fever, fatigue, and chills were the most common symptoms reported. Of the 152 respondents surveyed after COVID-19 vaccines became available, 82% reported being vaccinated. Race and age were significantly associated with positive vaccination status: most (78%) individuals who were vaccinated identified as Non-Hispanic White and were older than those who reported being unvaccinated (57±14 vs. 43±13 years, mean±SD). CONCLUSIONS: Self-reported COVID-19 symptoms were relatively uncommon and not severe in this sample of people with SCI. Potential confounders and limitations include responder, recruitment and self-reporting biases and changing pandemic conditions. Future studies on this topic should query social distancing and other behavioral strategies. Large retrospective chart review studies may provide additional data on incidence and prevalence of COVID-19 infections, symptoms, and severities in the SCI population.

Residential Mobility and Reasons for Moving Among People Living With Spinal Cord Injury: Results of a Multisite Survey Study.

Background: Residential mobility after spinal cord injury (SCI) has not been extensively examined despite a growing interest in investigating the relationship between neighborhood exposures and community living outcomes. Objectives: This study explores residential mobility patterns, the annual move rate, and reasons for moving among a community-living sample of adults with SCI. Methods: A survey was conducted with 690 people at six SCI Model Systems centers in the United States between July 2017 and October 2020. The outcomes included move status in the past 12 months, move distance, and the primary reason for moving. A sample from the 2019 American Community Survey (ACS) 5-year pooled estimates was obtained for comparative analysis. Descriptive statistics were used to summarize the distributions of the outcomes and differences between the samples. Results: The annual move rate for adults with SCI was 16.4%, and most moves were within the same county (56.6%). Recent movers were more likely to be young adults, be newly injured, and have low socioeconomic status. Housing quality, accessibility, and family were more frequently reported motivations for moving compared to employment. Young adults more commonly moved for family and accessibility, whereas middle-aged adults more commonly moved for housing quality. No notable difference was observed in the annual move rate between the SCI and the general population samples. Conclusion: These findings suggest an age-related pattern of residential relocation after SCI, which may be indicative an extended search for optimal living conditions that meet the housing and accessibility needs of this population.

Development of the Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES).

CONTEXT: Early during the COVID-19 pandemic, rehabilitation providers received reports from people with spinal cord injury (SCI) of considerable disruptions in caregiver services, medical and nursing care, and access to equipment and supplies; concomitantly, the medical community raised concerns related to the elevated risk of acquiring the infection due to SCI-specific medical conditions. Due to the novel nature of the pandemic, few tools existed to systematically investigate the outcomes and needs of people with SCI during this emergency. OBJECTIVE: To develop a multidimensional assessment tool for surveying the experience of the COVID-19 pandemic on physical and psychological health, employment, caregiving services, medical supplies and equipment, and the delivery of medical care for people with SCI. METHODS: The Spinal Cord Injury COVID-19 Pandemic Experience Survey (SCI-CPES) study, conducted between July 2020 through August 2021, surveyed people with SCI about their experiences during the early COVID-19 pandemic. The SCI-CPES was developed by a SCI care and research consortium using an iterative process. RESULTS: Two hundred and twenty-three people completed the survey. Most respondents resided in the consortium catchment area. As the survey progressed, online informed consent became available allowing dissemination of the SCI-CPES nationally. CONCLUSIONS: The consortium rapidly implemented the capture of experiences with COVID-19 pandemic directly from people with SCI, including survey creation, institutional approvals, distribution, online e-consenting, and data collection. In the future, the SCI-CPES is adaptable for use in other types of emergencies and disasters.

Profiling Immunological Phenotypes in Individuals During the First Year After Traumatic Spinal Cord Injury: A Longitudinal Analysis.

Abstract Individuals with SCI are severely affected by immune system changes, resulting in increased risk of infections and persistent systemic inflammation. While recent data support that immunological changes after SCI differ in the acute and chronic phases of living with SCI, only limited immunological phenotyping in humans is available. To characterize dynamic molecular and cellular immune phenotypes over the first year, we assess RNA (bulk-RNA sequencing), protein, and flow cytometry (FACS) profiles of blood samples from 12 individuals with SCI at 0-3 days and at 3, 6, and 12 months post injury (MPI) compared to 23 uninjured individuals (controls). We identified 967 differentially expressed (DE) genes in individuals with SCI (FDR <0.001) compared to controls. Within the first 6 MPI we detected a reduced expression of NK cell genes, consistent with reduced frequencies of CD56bright, CD56dim NK cells present at 12 MPI. Over 6MPI, we observed increased and prolonged expression of genes associated with inflammation (e.g. HMGB1, Toll-like receptor signaling) and expanded frequencies of monocytes acutely. Canonical T-cell related DE genes (e.g. FOXP3, TCF7, CD4) were upregulated during the first 6 MPI and increased frequencies of activated T cells at 3-12 MPI. Neurological injury severity was reflected in distinct whole blood gene expression profiles at any time after SCI, verifying a persistent 'neurogenic' imprint. Overall, 2876 DE genes emerge when comparing motor complete to motor incomplete SCI (ANOVA, FDR <0.05), including those related to neutrophils, inflammation, and infection. In summary, we identify a dynamic immunological phenotype in humans, including molecular and cellular changes which may provide potential targets to reduce inflammation, improve immunity, or serve as candidate biomarkers of injury severity.

Medical, dental, and optical care utilization among community-living people with spinal cord injury in the United States.

CONTEXT/OBJECTIVE: Information about patterns of healthcare utilization for people living with spinal cord injury (SCI) is currently limited, and this is needed to understand independent community living after SCI. This study investigates self-reported healthcare utilization among community-living people with SCI and assesses disparities across demographic, socioeconomic, and injury-related subgroups. DESIGN: Secondary analysis of cross-sectional survey data administered via telephone interview. SETTING: 6 SCI Model Systems centers in the United States (California, Colorado, New Jersey, New York, Ohio, and Pennsylvania). PARTICIPANTS: Adults with chronic, traumatic SCI who were community-living for at least one year after the completion of an inpatient rehabilitation program (N = 617). INTERVENTIONS: Not applicable. OUTCOME MEASURES: Utilization of a usual source of 4 types of health care in the past 12 months: primary, SCI, dental, and optical. RESULTS: 84% of participants reported utilizing primary care in the past year. More than half reported utilizing SCI (54%) and dental (57%) care, and 36% reported utilizing optical care. There were no significant differences across key subgroups in the utilization of primary care. Participants who had been injured for 5 years or less and participants with greater educational attainment were more likely to report utilizing SCI care. Participants with higher household income levels were more likely to report using dental care. Female participants and older age groups were more likely to report using optical care. CONCLUSION: Rates of healthcare utilization among people with SCI are below recommended rates and vary across demographic, socioeconomic, and injury-related subgroups. This information can inform future research to target barriers to using healthcare services among community-living people with SCI.

Treatments perceived to be helpful for neuropathic pain after traumatic spinal cord injury: A multicenter cross-sectional survey study.

DESIGN: Cross-sectional survey. OBJECTIVE: To evaluate the perceived helpfulness of pharmacological and non-pharmacological interventions and their combinations for neuropathic pain (NeuP) and subcategories of NeuP after spinal cord injury (SCI). SETTING: Six Spinal Cord Injury Model System Centers. METHODS: Three hundred ninety one individuals at least one year post traumatic SCI were enrolled. A telephone survey was conducted to determine the pharmacologic and non-pharmacologic treatments used in the last 12 months for each participant's three worst pains, whether these treatments were "helpful", and if currently used, each treatments' effectiveness. RESULTS: Two hundred twenty participants (56%) reported 354 distinct NeuPs. Pharmacological treatments rated helpful for NeuP were non-tramadol opioids (opioids were helpful for 86% of opioid treated NeuPs), cannabinoids (83%), and anti-epileptics (79%). Non-pharmacological treatments rated helpful for NeuP were massage (76%), body position adjustment (74%), and relaxation therapy (70%). Those who used both opioids and exercise reported greater NeuP treatment helpfulness compared to participants using opioids without exercise (P = 0.03). CONCLUSIONS: Opioids, cannabinoids, and massage were reported more commonly as helpful than treatments recommended as first-line therapies by current clinical practice guidelines (CPGs) for NeuP after SCI (antiepileptics and antidepressants). Individuals with SCI likely value the modulating effects of pharmacological and non-pharmacological treatments on the affective components of pain in addition to the sensory components of pain when appraising treatment helpfulness.

Evaluation of Cardiovascular Autonomic Function during Inpatient Rehabilitation following Traumatic Spinal Cord Injury.

Assessment of the degree of impaired autonomic nervous system (ANS) function is not part of routine clinical practice during inpatient rehabilitation following traumatic spinal cord injury (SCI). The goal of this investigation was to determine the utility of the International Standards for Neurologic Classification of SCI (ISNCSCI) and the recently revised International Standards to document remaining Autonomic Function after SCI (ISAFSCI) in documenting cardiovascular ANS impairment during inpatient rehabilitation following traumatic SCI. Beat-to-beat recording of supine heart rate (HR) and blood pressure (BP) were collected at the bedside for estimation of total cardiovascular ISAFSCI score, cardio-vagal modulation (i.e., high frequency HR variability [HFHRV]) and sympathetic vasomotor regulation (i.e., Mayer wave component of systolic BP [SBPmayer]). A total of 41 participants completed baseline testing, which was conducted 11 ± 5 days from the admission ISNCSCI examination. There were no differences in supine HR or BP based on the ISNCSCI or ISAFSCI assessments. The HFHRV was generally lower with more distal lesions (r2 = 0.15; p = 0.01), and SBPmayer was significantly lower in those with American Spinal Injury Association Impairment Scale (AIS) A compared with AIS B, C, D (Cohen's d = -1.4; p < 0.001). There were no significant differences in HFHRV or SBPmayer in patients with or without ISAFSCI evidence of cardiovascular ANS impairment. These preliminary data suggest that neither the ISNCSCI nor the ISAFSCI are sensitive to changes in ANS cardiovascular function following traumatic SCI. Bedside assessment of HR and BP variabilities may provide insight, but are not readily available in the clinical setting. Further research is required to evaluate methods that accurately assess the degree of ANS impairment following traumatic SCI.