Is the level of consent to a national research registry associated with patient outcomes following traumatic spinal cord injury? A population-based study from the Rick Hansen Spinal Cord Injury Registry (RHSCIR).

OBJECTIVE: We examined the impact of consenting to the Rick Hansen Spinal Cord Injury Registry (RHSCIR) on outcomes: acute length of stay (LOS), in-hospital mortality, medical complications (pressure injuries and pneumonia), and the final discharge destination following a spinal cord injury (SCI) using the national RHSCIR dataset. DESIGN: A retrospective cohort study was conducted using RHSCIR participant data from 2014 to 2019. Participants approached for enrollment were grouped into 1) PC: provided full consent including community follow-up (CFU) interviews, 2) DWC: declined CFU interviews but accepted minimal data collection that may include initial/final interviews and/or those who later withdrew consent, and 3) DC: declined consent to any participation. As no data was collected for the DC group, descriptive, bivariate, and multivariable regression analysis was limited to the PC and DWC groups. RESULTS: Of 2811 participants, 2101 (74.7%) were PC, 553 (19.7%) were DWC, and 157 (5.6%) were DC. DWC participants had significantly longer acute LOS, more acute pneumonias/pressure injuries, and were less likely to be discharged home than PC participants. All these associations - except pneumonia - remained significant in the multivariable analyses. CONCLUSION: Not participating fully in RHSCIR was associated with more complications and longer hospital stays.

Enabling knowledge translation: implementation of a web-based tool for independent walking prediction after traumatic spinal cord injury.

Introduction: Several clinical prediction rules (CPRs) have been published, but few are easily accessible or convenient for clinicians to use in practice. We aimed to develop, implement, and describe the process of building a web-based CPR for predicting independent walking 1-year after a traumatic spinal cord injury (TSCI). Methods: Using the published and validated CPR, a front-end web application called "Ambulation" was built using HyperText Markup Language (HTML), Cascading Style Sheets (CSS), and JavaScript. A survey was created using QualtricsXM Software to gather insights on the application's usability and user experience. Website activity was monitored using Google Analytics. Ambulation was developed with a core team of seven clinicians and researchers. To refine the app's content, website design, and utility, 20 professionals from different disciplines, including persons with lived experience, were consulted. Results: After 11 revisions, Ambulation was uploaded onto a unique web domain and launched (www.ambulation.ca) as a pilot with 30 clinicians (surgeons, physiatrists, and physiotherapists). The website consists of five web pages: Home, Calculation, Team, Contact, and Privacy Policy. Responses from the user survey (n = 6) were positive and provided insight into the usability of the tool and its clinical utility (e.g., helpful in discharge planning and rehabilitation), and the overall face validity of the CPR. Since its public release on February 7, 2022, to February 28, 2023, Ambulation had 594 total users, 565 (95.1%) new users, 26 (4.4%) returning users, 363 (61.1%) engaged sessions (i.e., the number of sessions that lasted 10 seconds/longer, had one/more conversion events e.g., performing the calculation, or two/more page or screen views), and the majority of the users originating from the United States (39.9%) and Canada (38.2%). Discussion: Ambulation is a CPR for predicting independent walking 1-year after TSCI and it can assist frontline clinicians with clinical decision-making (e.g., time to surgery or rehabilitation plan), patient education and goal setting soon after injury. This tool is an example of adapting a validated CPR for independent walking into an easily accessible and usable web-based tool for use in clinical practice. This study may help inform how other CPRs can be adopted into clinical practice.

Multimorbidity in persons with non-traumatic spinal cord injury and its impact on healthcare utilization and health outcomes.

STUDY DESIGN: Cross-sectional survey in Canada. OBJECTIVES: To explore multimorbidity (the coexistence of two/more health conditions) in persons with non-traumatic spinal cord injury (NTSCI) and evaluate its impact on healthcare utilization (HCU) and health outcomes. SETTING: Community-dwelling persons. METHODS: Data from the Spinal Cord Injury Community Survey (SCICS) was used. A multimorbidity index (MMI) consisting of 30 secondary health conditions (SHCs), the 7-item HCU questionnaire, the Short Form-12 (SF-12), Life Satisfaction-11 first question, and single-item Quality of Life (QoL) measure were administered. Additionally, participants were grouped as "felt needed healthcare was received" (Group 1, n = 322) or "felt needed healthcare was not received" (Group 2, n = 89) using the HCU question. Associations among these variables were assessed using multivariable analysis. RESULTS: 408 of 412 (99%) participants with NTSCI reported multimorbidity. Constipation, spasticity, and fatigue were the most prevalent self-reported SHCs. Group 1 had a higher MMI score compared to Group 2 (p < 0.001). A higher MMI score correlated with the feeling of not receiving needed care (OR 1.4, 95% CI 1.08-1.21), lower SF-12 (physical/mental component summary scores), being unsatisfied with life, and lower QoL (all p < 0.001). Additionally, Group 1 had more females (p < 0.001), non-Caucasians (p = 0.034), and lower personal annual income (p = 0.025). CONCLUSIONS: Persons with NTSCI have multimorbidity, and the MMI score was associated with increased HCU and worse health outcomes. This work emphasizes the critical need for improved healthcare and monitoring. Future work determining specific thresholds for the MMI could be helpful for triage screening to identify persons at higher risk of poor outcomes.

Using the Standing and Walking Assessment Tool at Discharge Predicts Community Outdoor Walking Capacity in Persons With Traumatic Spinal Cord Injury.

OBJECTIVE: The Standing and Walking Assessment Tool (SWAT) standardizes the timing and content of walking assessments during inpatient rehabilitation by combining 12 stages ranging from lowest to highest function (0, 0.5, 1A, 1B, 1C, 2A, 2B, 2C, 3A, 3B, 3C, and 4) with 5 standard measures: the Berg Balance Scale, the modified Timed "Up & Go" test, the Activities-specific Balance Confidence Scale, the modified 6-Minute Walk Test, and the 10-Meter Walk Test (10MWT). This study aimed to determine if the SWAT at rehabilitation discharge could predict outdoor walking capacity 1-year after discharge in people with traumatic spinal cord injury. METHODS: This retrospective study used data obtained from the Rick Hansen Spinal Cord Injury Registry from 2014 to 2020. Community outdoor walking capacity was measured using the Spinal Cord Independence Measure III (SCIM III) outdoor mobility score obtained 12 (±4) months after discharge. Of 206 study participants, 90 were community nonwalkers (ie, SCIM III score 0-3), 41 were community walkers with aids (ie, SCIM III score 4-6), and 75 were independent community walkers (ie, SCIM III score 7-8). Bivariate, multivariable regression, and an area under the receiver operating characteristic curve analyses were performed. RESULTS: At rehabilitation discharge, 3 significant SWAT associations were confirmed: 0-3A with community nonwalkers, 3B/higher with community walkers with and without an aid, and 4 with independent community walkers. Moreover, at discharge, a higher (Berg Balance Scale, Activities-specific Balance Confidence Scale), faster (modified Timed "Up & Go," 10MWT), or further (10MWT) SWAT measure was significantly associated with independent community walking. Multivariable analysis indicated that all SWAT measures, except the 10MWT were significant predictors of independent community walking. Furthermore, the Activities-Specific Balance Confidence Scale had the highest area under the receiver operating characteristic score (0.91), demonstrating an excellent ability to distinguish community walkers with aids from independent community walkers. CONCLUSION: The SWAT stage and measures at discharge can predict community outdoor walking capacity in persons with traumatic spinal cord injury. Notably, a patient's confidence in performing activities plays an important part in achieving walking ability in the community. IMPACT: The discharge SWAT is useful to optimize discharge planning.

Network analysis of multimorbidity and health outcomes among persons with spinal cord injury in Canada.

Introduction: Multimorbidity, defined as the coexistence of two or more health conditions, is common in persons with spinal cord injury (SCI). Network analysis is a powerful tool to visualize and examine the relationship within complex systems. We utilized network analysis to explore the relationship between 30 secondary health conditions (SHCs) and health outcomes in persons with traumatic (TSCI) and non-traumatic SCI (NTSCI). The study objectives were to (1) apply network models to the 2011-2012 Canadian SCI Community Survey dataset to identify key variables linking the SHCs measured by the Multimorbidity Index-30 (MMI-30) to healthcare utilization (HCU), health status, and quality of life (QoL), (2) create a short form of the MMI-30 based on network analysis, and (3) compare the network-derived MMI to the MMI-30 in persons with TSCI and NTSCI. Methods: Three network models (Gaussian Graphical, Ising, and Mixed Graphical) were created and analyzed using standard network measures (e.g., network centrality). Data analyzed included demographic and injury variables (e.g., age, sex, region of residence, date, injury severity), multimorbidity (using MMI-30), HCU (using the 7-item HCU questionnaire and classified as "felt needed care was not received" [HCU-FNCNR]), health status (using the 12-item Short Form survey [SF-12] Physical and Mental Component Summary [PCS-12 and MCS-12] score), and QoL (using the 11-item Life Satisfaction questionnaire [LiSAT-11] first question and a single item QoL measure). Results: Network analysis of 1,549 participants (TSCI: 1137 and NTSCI: 412) revealed strong connections between the independent nodes (30 SHCs) and the dependent nodes (HCU-FNCNR, PCS-12, MCS-12, LiSAT-11, and the QoL score). Additionally, network models identified that cancer, deep vein thrombosis/pulmonary embolism, diabetes, high blood pressure, and liver disease were isolated. Logistic regression analysis indicated the network-derived MMI-25 correlated with all health outcome measures (p <0.001) and was comparable to the MMI-30. Discussion: The network-derived MMI-25 was comparable to the MMI-30 and was associated with inadequate HCU, lower health status, and poor QoL. The MMI-25 shows promise as a follow-up screening tool to identify persons living with SCI at risk of having poor health outcomes.

Maternal human leukocyte antigen-G (HLA-G) genetic variants associate with in utero mother-to-child transmission of HIV-1 in Black South Africans.

A 14-bp insertion/deletion (indel) within the 3' untranslated region (3'UTR) that affects HLA-G expression has been associated with HIV-1 mother-to-child transmission (MTCT). However, other 3'UTR single nucleotide polymorphisms (SNPs) that influence HLA-G mRNA stability have been described but not analysed in the context of MTCT, and little is known about the role of HLA-G alleles. We examined HLA-G alleles and 3'UTR SNPs, including the 14-bp indel, in 216 mother-infant pairs from Johannesburg, South Africa. Mother-infant pairs were classified as HIV-1 non-transmitting (NT, n=144) or HIV-1 transmitting (TR, n=72) with either intrapartum (IP, n=29) or in utero (IU, n=19) infected infants. We found HLA-G allele, G(∗)01:01:02 (in strong linkage disequilibrium with the 14-bp insertion) and +3187G SNP were significantly over-represented in IU-TR mothers compared to NT mothers (P=0.036, OR=2.26; P=0.011, OR=2.96, respectively). These findings suggest that maternal HLA-G alleles and/or SNPs that might alter expression of HLA-G potentially influence IU HIV-1 MTCT.

KIR2DS4 allelic variants: Differential effects on in utero and intrapartum HIV-1 mother-to-child transmission.

KIR2DS4 is the only activating gene within the A haplotype, and alleles of KIR2DS4 can encode either functional (KIR2DS4-f) or non-functional (KIR2DS4-v) variants. To establish the role of KIR2DS4 in the context of HIV-1 mother-to-child transmission, we KIR genotyped 145 HIV-1 non-transmitting mothers (NT) and their exposed uninfected infants (EU), and 72 HIV-1 transmitting mothers (TR) and their infected infants [intrapartum (IP), in utero (IU) or IU2 (an IU-enriched infected group)]. The frequency of KIR2DS4-v was significantly higher in IU2 infants compared to EU infants (P=0.022, OR=2.88); this association was more significant amongst AA haplotypes (P=0.004, OR=18.4). Possession of KIR2DS4-f in the mother with absence in the infant (M+I- discordance) was associated with a higher risk of IP transmission (P=0.005, OR=3.84); whilst in M-I+ discordance, infant possession of KIR2DS4-v was associated with increased risk of IU acquisition (P=0.002; OR=6.40). This study highlights the importance of KIR2DS4 in HIV-1 transmission/acquisition.