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.

Trends of limb amputation considering type, level, sex and age in Saskatchewan, Canada 2006-2019: an in-depth assessment.

BACKGROUND: Most epidemiologic reports focus on lower extremity amputation (LEA) caused specifically by diabetes mellitus. However, narrowing scope disregards the impact of other causes and types of limb amputation (LA) diminishing the true incidence and societal burden. We explored the rates of LEA and upper extremity amputation (UEA) by level of amputation, sex and age over 14 years in Saskatchewan, Canada. METHODS: We calculated the differential impact of amputation type (LEA or UEA) and level (major or minor) of LA using retrospective linked hospital discharge data and demographic characteristics of all LA performed in Saskatchewan and resident population between 2006 and 2019. Rates were calculated from total yearly cases per yearly Saskatchewan resident population. Joinpoint regression was employed to quantify annual percentage change (APC) and average annual percent change (AAPC). Negative binomial regression was performed to determine if LA rates differed over time based on sex and age. RESULTS: Incidence of LEA (31.86 ± 2.85 per 100,000) predominated over UEA (5.84 ± 0.49 per 100,000) over the 14-year study period. The overall LEA rate did not change over the study period (AAPC -0.5 [95% CI - 3.8 to 3.0]) but fluctuations were identified. From 2008 to 2017 LEA rates increased (APC 3.15 [95% CI 1.1 to 5.2]) countered by two statistically insignificant periods of decline (2006-2008 and 2017-2019). From 2006 to 2019 the rate of minor LEA steadily increased (AAPC 3.9 [95% CI 2.4 to 5.4]) while major LEA decreased (AAPC -0.6 [95% CI - 2.1 to 5.4]). Fluctuations in the overall LEA rate nearly corresponded with fluctuations in major LEA with one period of rising rates from 2010 to 2017 (APC 4.2 [95% CI 0.9 to 7.6]) countered by two periods of decline 2006-2010 (APC -11.14 [95% CI - 16.4 to - 5.6]) and 2017-2019 (APC -19.49 [95% CI - 33.5 to - 2.5]). Overall UEA and minor UEA rates remained stable from 2006 to 2019 with too few major UEA performed for in-depth analysis. Males were twice as likely to undergo LA than females (RR = 2.2 [95% CI 1.99-2.51]) with no change in rate over the study period. Persons aged 50-74 years and 75+ years were respectively 5.9 (RR = 5.92 [95% Cl 5.39-6.51]) and 10.6 (RR = 10.58 [95% Cl 9.26-12.08]) times more likely to undergo LA than those aged 0-49 years. LA rate increased with increasing age over the study period. CONCLUSION: The rise in the rate of minor LEA with simultaneous decline in the rate of major LEA concomitant with the rise in age of patients experiencing LA may reflect a paradigm shift in the management of diseases that lead to LEA. Further, this shift may alter demand for orthotic versus prosthetic intervention. A more granular look into the data is warranted to determine if performing minor LA diminishes the need for major LA.

The influence of primary and subsequent limb amputation on the overall rate of limb amputation in Saskatchewan, Canada, 2006-2019: a population-based study.

BACKGROUND: Understanding trends in limb amputation (LA) can provide insight into the prevention and optimization of health care delivery. We examine the influence of primary (first report) and subsequent (multiple reports) limb amputation on the overall (all reports) rate of limb amputation in Saskatchewan considering amputation level. METHODS: Hospital discharged data associated with LA from 2006 to 2019 and population estimates in Saskatchewan were used. LA cases were grouped based on overall, primary, and subsequent LA and further divided by level into major (through/above the ankle/wrist) and minor (below the ankle/wrist). Incidence rates were calculated using LA cases as the numerator and resident population as the denominator. Joinpoint and negative binomial were used to analyze the trends. In addition, the top three amputation predisposing factors (APF) were described by LA groups. RESULTS: The rate of overall LA and primary LA remained stable (AAPC - 0.9 [95% CI - 3.9 to 2.3]) and (AAPC -1.9 [95% CI -4.2 to 0.4]) respectively, while the rate of subsequent LA increased 3.2% (AAPC 3.2 [95% CI 3.1 to 9.9]) over the 14-year study period. The rate of overall major LA declined 4.6% (AAPC - 4.6 [95% CI -7.3 to -1.7]) and was largely driven by the 5.9% decline in the rate of primary major LA (AAPC - 5.9 [95% CI - 11.3 to -0.2]). Subsequent major LA remained stable over the study period (AAPC -0.4 [95% CI - 6.8 to 6.5]). In contrast, the overall rate of minor LA increased 2.0% (AAPC 2.0 [95% CI 1.0 to 2.9]) over the study period which was largely driven by a 9.6% increase in the rate of subsequent minor LA (AAPC 9.6 [95% CI 4.9 to 14.4]). Primary minor LA rates remained stable over the study period (AAPC 0.6 [95% CI - 0.2 to 1.5]). The study cohorts were 1.3-fold greater risk of minor LA than major LA. Diabetes mellitus (DM) was the leading APF representing 72.8% of the cohort followed by peripheral vascular disease (PVD) and trauma with 17.1 and 10.1% respectively. Most (86.7%) of subsequent LA were performed on people with DM. CONCLUSIONS: Overall LA rates remained stable over the study period with declining rates of major LA countered by rising rates of minor LA. Minor LA exceeded major LA with the largest rate increase identified in subsequent minor LA. Diabetes was the greatest APF for all LA groups. This rising rate of more frequent and repeated minor LA may reflect changing intervention strategies implemented to maintain limb function. The importance of long-term surveillance to understand rates of major and minor LA considering primary and subsequent intervention is an important step to evaluate and initiate prevention and limb loss management programs.

A Focus Group- and Patient-Driven Study to Understand Patients' and Health Care Providers' Perspectives on Services for People with Amputation.

Purpose: This study investigates patients' and health care providers' perspectives on the services provided for people with amputation in Saskatoon. Method: We used a qualitative approach, following the Delphi method. A patient-oriented research team designed five questions and presented them to two focus groups. The discussions focused on what worked well in the health care system and what could be improved, what could be improved in the community, future research, and ways to improve specific knowledge translation regarding care of people with amputation to therapists. Results: The two focus groups consisted of 48 panellists, all community members and health care professionals. The themes that emerged included positive experiences with prosthetic care and the individual people responsible for amputee care and improvements needed to streamline the pathways of care, community support, education, and research into all aspects of amputation. Conclusions: Amputation is not just a one-time medical procedure; people with amputation need lifelong support from health care providers and the community. Clear pathways of care, access to immediate support, amputee-specific education for health care providers, better patient education, increased physical therapy, and enhanced resources and care were identified as areas in need of improvement. This study will, we hope, form the basis of future research to continually improve the quality of care and support for people living with amputation.

Objectif : explorer le point de vue des patients et des dispensateurs de soins à l'égard des services fournis aux personnes amputées de Saskatoon. Méthodologie : recherche qualitative faisant appel à la méthode Delphi. Une équipe de recherche orientée vers le patient a conçu cinq questions et les a présentées à deux groupes de travail. Les discussions ont porté sur ce qui fonctionnait bien et ce qui pouvait être amélioré dans le système de santé, ce qui pouvait être amélioré dans la communauté, les futures recherches et les moyens d'améliorer l'application des connaissances des thérapeutes sur les soins aux amputés. Résultats : les deux groupes de travail étaient composés de 48 participants, tous des membres de la communauté et des professionnels de la santé. Les thèmes qui sont ressortis étaient les expériences positives à l'égard des soins prothétiques et de la personne responsable des soins aux amputés, alors que des améliorations s'imposaient pour harmoniser la trajectoire des soins, le soutien communautaire, la formation, l'éducation et la recherche sur tous les aspects de l'amputation. Conclusion : l'amputation n'est pas une intervention ponctuelle, mais les personnes amputées ont besoin d'un soutien tout au long de leur vie de la part des dispensateurs de soins et de la communauté. Des trajectoires de soins claires, l'accès à un soutien immédiat, une formation sur les amputés destinée aux dispensateurs de soins, une meilleure éducation des patients, l'accroissement des services de physiothérapie et l'amélioration des ressources et des soins sont les secteurs à améliorer. Les auteurs espèrent que la présente étude jette les bases de futures recherches pour assurer l'amélioration continue de la qualité des soins et du soutien aux personnes amputées.

Changes to stance limb peak, cumulative, and regional plantar foot forces among normal walking and three mobility aids in healthy older adults.

BACKGROUND: Mobility aids are commonly prescribed to offload an injured lower extremity. Device selection may impact stance foot loading patterns and foot health in clinical populations at risk of foot ulceration. RESEARCH QUESTIONS: Two questions motivated this study: How does device selection influence peak plantar and regional (rearfoot, mid foot and forefoot) foot forces on the stance foot? Does device selection influence peak, cumulative, and regional plantar forces within a 200 m walking trial? METHODS: Twenty-one older adults walked 200 m at self-selected pace in four randomized conditions for this prospective crossover study. Participants used a walker, crutches, wheeled knee walker (WKW), and no assistive device (control condition). Plantar forces were measured using a wireless in-shoe system (Loadsol, Novel Inc., St. Paul, MN). Repeated measures analyses of variance were used to determine differences in peak and cumulative total and regional forces among walking conditions. Paired sample t-tests compared forces during first and last 30 s epochs of each condition to determine device influence over time. RESULTS: The WKW reduced peak net forces by 0.29 and 0.35 bodyweight (BW) when compared to the walker or control condition with similar trends in all foot regions. Crutch use had similar peak forces as control. There were no differences in the number of steps taken within devices comparing first and last epochs. Crutches had a 0.04 and 0.07 BW increase in peak net and forefoot forces during the last epoch. Walker use had 66.44 BW lower cumulative forefoot forces in the last epoch. SIGNIFICANCE: Crutches had similar stance foot loading as normal walking while a walker lowered forefoot forces at the expense of increased steps. A WKW may be the best choice to 'protect' tissues in the stance foot from exposure to peak and cumulative forces in the forefoot region.

Health Conditions: Effect on Function, Health-Related Quality of Life, and Life Satisfaction After Traumatic Spinal Cord Injury. A Prospective Observational Registry Cohort Study.

OBJECTIVE: To analyze relations among injury, demographic, and environmental factors on function, health-related quality of life (HRQoL), and life satisfaction in individuals with traumatic spinal cord injury (SCI). DESIGN: Prospective observational registry cohort study. SETTING: Specialized acute and rehabilitation SCI centers. PARTICIPANTS: Participants (N=340) from the Rick Hansen Spinal Cord Injury Registry (RHSCIR) who were prospectively recruited from 2004 to 2014 were included. The model cohort participants were 79.1% men, with a mean age of 41.6±17.3 years. Of the participants, 34.7% were motor/sensory complete (ASIA Impairment Scale [AIS] grade A). INTERVENTIONS: None. MAIN OUTCOME MEASURES: Path analysis was used to determine relations among SCI severity (AIS grade and anatomic level [cervical/thoracolumbar]), age at injury, education, number of health conditions, functional independence (FIM motor score), HRQoL (Medical Outcomes Study 36-Item Short-Form Health Survey [Version 2] Physical Component Score [PCS] and Mental Component Score [MCS]), and life satisfaction (Life Satisfaction-11 [LiSat-11]). Model fit was assessed using recommended published indices. RESULTS: Goodness of fit of the model was supported by all indices, indicating the model results closely matched the RHSCIR data. Higher age, higher severity injuries, cervical injuries, and more health conditions negatively affected FIM motor score, whereas employment had a positive effect. Higher age, less education, more severe injuries (AIS grades A-C), and more health conditions negatively correlated with PCS (worse physical health). More health conditions were negatively correlated with a lower MCS (worse mental health), however were positively associated with reduced function. Being married and having higher function positively affected Lisat-11, but more health conditions had a negative effect. CONCLUSIONS: Complex interactions and enduring effects of health conditions after SCI have a negative effect on function, HRQoL, and life satisfaction. Modeling relations among these types of concepts will inform clinicians how to positively effect outcomes after SCI (eg, development of screening tools and protocols for managing individuals with traumatic SCI who have multiple health conditions).

Predicting rehabilitation length of stay in Canada: It's not just about impairment.

INTRODUCTION: Current tertiary Spinal Cord Injury (SCI) rehabilitation funding and rehabilitation length of stay (R-LOS) in most North American jurisdictions are linked to an individual's impairment. Our objectives were to: 1) describe the impact of relevant demographic, impairment and medical complexity variables at rehabilitation admission on R-LOS among adult Canadians with traumatic SCI; and 2) identify factors which extend R-LOS. METHODS: Data from 1,376 adults with traumatic SCI were obtained via chart abstraction and administrative data linkage from 15 Rick Hansen SCI Registry sites (2004-2014). Variables included age, sex, neurological impairment (level, severity), rehabilitation onset days, R-LOS, Glasgow Coma Score (GCS) at admission, prior ventilation or endotracheal tube (Vent/ETT), or indwelling bladder catheter at acute discharge, pain interference score, intensive care unit (ICU) length of stay (LOS), and lower extremity motor scores (LEMS) at rehabilitation admission. Variables related to R-LOS in bivariate analysis were included in multivariate analysis to determine their impact on R-LOS. RESULTS: Prior Vent/ETT tube, indwelling bladder catheter, GCS, LEMS, and neurological impairment were related to R-LOS in bivariate analysis. Multivariate linear regression analyses identified five variables as significant predictors: age, Vent/ETT for >24 hours in acute care, indwelling bladder catheter at acute discharge, LEMS, and NLI/AIS subgroup at rehabilitation admission explained 32% of the variation in R-LOS (p<0.001). CONCLUSIONS: Based on the enclosed formula, and knowledge of an individual's age at injury, spinal cord impairment (level and severity), prior Vent/ETT, presence of an indwelling bladder catheter, and LEMS at admission, administrators and clinicians may readily identify patients for whom an extended R-LOS beyond conventional LOS targets is likely.

Forecasting Financial Resources for Future Traumatic Spinal Cord Injury Care Using Simulation Modeling.

Survivors of traumatic spinal cord injury (tSCI) have intense healthcare needs during acute and rehabilitation care and often through the rest of life. To prepare for a growing and aging population, simulation modeling was used to forecast the change in healthcare financial resources and long-term patient outcomes between 2012 and 2032. The model was developed with data from acute and rehabilitation care facilities across Canada participating in the Access to Care and Timing project. Future population and tSCI incidence for 2012 and 2032 were predicted with data from Statistics Canada and the Canadian Institute for Health Information. The projected tSCI incidence for 2012 was validated with actual data from the Rick Hansen SCI Registry of the participating facilities. Using a medium growth scenario, in 2032, the projected median age of persons with tSCI is 57 and persons 61 and older will account for 46% of injuries. Admissions to acute and rehabilitation facilities in 2032 were projected to increase by 31% and 25%, respectively. Because of the demographic shift to an older population, an increase in total population life expectancy with tSCI of 13% was observed despite a 22% increase in total life years lost to tSCI between 2012 and 2032. Care cost increased 54%, and rest of life cost increased 37% in 2032, translating to an additional CAD $16.4 million. With the demographics and management of tSCI changing with an aging population, accurate projections for the increased demand on resources will be critical for decision makers when planning the delivery of healthcare after tSCI.

Traumatic Spinal Cord Injury Care in Canada: A Survey of Canadian Centers.

Specialized centers of care for persons sustaining a traumatic spinal cord injury (tSCI) have been established in many countries, but the ideal system of care has not been defined. The objective of this study was to describe care delivery, with a focus on structures and services, for persons with tSCI in Canada. A survey was sent to 26 facilities (12 acute, 11 rehabilitation, and three integrated) from eight provinces participating in the Access to Care and Timing project. The survey included questions about: 1) care provision; 2) structural attributes and; 3) service availability. Survey completion rate was 100%. Data sources used to complete the survey were the Rick Hansen Spinal Cord Injury Registry, other hospital databases, clinical protocols, and subject matter experts. Acute and rehabilitation care provided by integrated facilities were described separately, resulting in data from 15 acute and 14 rehabilitation facilities. The number of admissions for tSCI over a 12-month period between 2009-2011 ranged from 17 to 104 (median 39), and 11 to 96 (median 32), for acute and rehabilitation facilities, respectively. Grouping of patients was reported by 8/15 acute and 10/14 rehabilitation facilities. Criteria for admission to the inpatient rehabilitation facilities varied among facilities (25 different criteria reported). Results from the survey revealed similarities in the basic structure and the provision of general services, but also some differences in the degree of specialization of care for persons with tSCI. Continued work on the impact of specialized care for both the patient and healthcare system is needed.

Does Specialized Inpatient Rehabilitation Affect Whether or Not People with Traumatic Spinal Cord Injury Return Home?

Return to living at home is an important patient-reported outcome following traumatic spinal cord injury (tSCI). Specialized inpatient rehabilitation assists such patients in maximizing function and independence. Our project aim was to describe those patients receiving specialized rehabilitation after tSCI in Canada, and to determine if such rehabilitation improved the likelihood of returning home. This cohort study utilized data from the Rick Hansen Spinal Cord Injury Registry (RHSCIR) to identify patients with tSCI discharged from 1 of 18 participating acute specialized spine facilities between 2011 and 2015 to either 1 of 13 participating specialized rehabilitation facilities, or to another discharge destination. To determine if specialized rehabilitation affected likelihood of returning home, multiple logistic regressions and propensity score matchings were performed to account for age at injury, gender, neurological severity and level, acute length of stay (LOS), and region of residence. The χ2 test was used to compare rate of return home between matched groups. Of the 1599 patients included, 71% received specialized rehabilitation. Receiving specialized rehabilitation was a significant and strong predictor of return to home after controlling for covariates (adjusted odds ratio = 3.1; 95% confidence interval [CI], 1.6-5.9). The rate of return to home was significantly higher in the matched rehabilitation group than the no rehabilitation group (98% vs. 87%, p = 0.0004). For the matched patients, an extra 11 patients returned home for every 100 patients receiving specialized rehabilitation. However, effect of age on returning home requires further investigation. Improving access to specialized rehabilitation could potentially reduce discharges to nursing homes or other non-home destinations.

User satisfaction with a telemedicine amputee clinic in Saskatchewan.

A group of 15 patients with amputee-related diagnoses were given a satisfaction survey after telemedicine assessment. Most of the videoconferencing sessions used an IP connection at 768 kbit/s. The patients were seen at four sites. The average connection time was less than 5 min and the average time for a session was approximately 40 min. Thirteen questions required scaled responses (poor, fair, good, excellent) and two required yes/no answers. The 13 categories broadly related to satisfaction with the telemedicine service and the quality of specialist care. In all categories, 97% of the responses fell in the good to excellent range. Concerns were raised about ease of access to local telemedicine sites, connection waiting times and lack of familiarity with telemedicine technology. The study showed that telemedicine was acceptable to patients with amputations and provided a reliable assessment of the amputee.