Perspectives on medical assistance in dying amongst persons with traumatic spinal cord injury: a qualitative study.

STUDY DESIGN: Qualitative. OBJECTIVE: To explore the perspectives of persons living with chronic (>5 y) traumatic spinal cord injuries (tSCI) concerning medical assistance in dying (MAID). SETTING: Saskatchewan, Canada. METHODS: Qualitative exploratory using an interpretative description methodology. Individual semi-structured interviews were held with online video conferencing. Interviews were analyzed using codebook thematic analysis. RESULTS: Ten persons with a chronic (>5 y) tSCI participated (seven males, three females; age 20s-50s; spinal cord level C2-T10). Participants expressed support for persons living with SCI having access to MAID, specifically in the context of preserving autonomy and respecting equality when compared with able-bodied individuals. However, some were concerned about the implications of access to MAID solely based on the diagnosis of a SCI. Participants also emphasized the variability in the initial personal response to injury and expressed concern about MAID being immediately available after injury. They explained the significance and necessity of reflecting on the injury in what can be a lengthy process of adjustment and acceptance. Participants also discussed the importance of hope and highlighted the irreplaceable value of peer support in shaping hope throughout rehabilitation and the need for compassionate, comprehensive, and continuous care to facilitate reintegration and support independence. CONCLUSIONS: Access to MAID provides a greater range of choices for individuals with tSCI but could increase deaths occurring before optimal adaptation and adjustment. The involvement of inter-professional teams, mental health specialists and peers is important to frame hope and understand the potential of a fulfilling life with a tSCI.

Provincial Differences in the Diagnosis and Care of Amyotrophic Lateral Sclerosis.

BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease resulting in muscle weakness, dysarthria and dysphagia, and ultimately respiratory failure leading to death. Half of the ALS patients survive less than 3 years, and 80% of the patients survive less than 5 years. Riluzole is the only approved medication in Canada with randomized controlled clinical trial evidence to slow the progression of ALS, albeit only to a modest degree. The Canadian Neuromuscular Disease Registry (CNDR) collects data on over 140 different neuromuscular diseases including ALS across ten academic institutions and 28 clinics including ten multidisciplinary ALS clinics. METHODS: In this study, CNDR registry data were analyzed to examine potential differences in ALS care among provinces in time to diagnosis, riluzole and feeding tube use. RESULTS: Significant differences were found among provinces, in time to diagnosis from symptom onset, in the use of riluzole and in feeding tube use. CONCLUSIONS: Future investigations should be undertaken to identify factors contributing to such differences, and to propose potential interventions to address the provincial differences reported.

Participants' perspectives of "NeuroSask: Active and Connect"-a virtual chronic disease management program for individuals with a neurological condition.

Introduction: Neurological conditions account from more than half of Canadians requiring chronic care. Both physical activity and the development of a self-management skillset are critical components supporting individuals with chronic health conditions. "NeuroSask: Active and Connected" is a virtual chronic disease management program offering twice weekly neuro-physiotherapist directed "active" exercise sessions, followed by weekly knowledge-exchange "connect" sessions with invited guest experts. NeuroSask was launched April 2020 in response to the restricted services and supports for people with neurological conditions. The program aimed to provide seated physical activity, social interaction, and access to expertise in neurological conditions and neurorehabilitation. A program evaluation of NeuroSask was conducted to gain participants' perspectives. Methods: All participants registered for the NeuroSask program were invited to complete optional online surveys (SurveyMonkey) circulated by email at 3 occasions post-program launch: 10 weeks, 1 year, and 2 years. Participants could complete any one or all of the surveys, at their discretion. The number of potential respondents changed dependent on the total number of participants registered for NeuroSask at the time the survey was circulated. Questions were co-designed by multi-stakeholder team members. Descriptive statistics were used for closed-ended questions and a reflexive thematic analysis was completed with coding conducted in NVivo 12 Plus for open-ended text. Results: Response rates (participants/registrants) were as follows: 10-week survey 260/793, one year survey 326/1224, and 2-year survey 434/1989. 90% of participants reported being in either the age categories of 40-59 years or above 60 years. 75% of both survey respondents and program registrants were female. 70% of both survey respondents and program registrants reported a diagnosis of multiple sclerosis and 30% reported other neurological conditions. Survey respondents were from all ten Canadian provinces, with 45% reporting living outside of large cities. Respondents reported preferring online vs. in person format for this type of programming. Three main themes, and eight corresponding subthemes were identified highlighting the perceived impact and key components of the NeuroSask program: Theme 1 "together in a positive and encouraging environment" (subthemes 1a: connection, 1b: empowerment); Theme 2 "access to enthusiastic qualified leaders from home" (subthemes 2a: leader characteristics, 2b: accessibility, 2c: program logistics); Theme 3 "being able to enjoy everyday life" (subthemes 3a: symptom benefits and beyond, 3b: carry-over, 3c: keep going, please do not cancel). Conclusion: NeuroSask is an example of an accessible and meaningful virtual approach to providing ongoing support for some individuals with neurological conditions. It was perceived as beneficial for fostering community and connection in a positive environment with perceived benefits extending beyond symptom management to participant reported improvements in function, daily life, and disease experience.

Ipsilesional Motor Cortex Activation with High-force Unimanual Handgrip Contractions of the Less-affected Limb in Participants with Stroke.

Stroke is a leading cause of severe disability that often presents with unilateral motor impairment. Conventional rehabilitation approaches focus on motor practice of the affected limb and aim to suppress brain activity in the contralesional hemisphere. Conversely, exercise of the less-affected limb promotes contralesional brain activity which is typically viewed as contraindicated in stroke recovery due to the interhemispheric inhibitory influence onto the ipsilesional hemisphere. Yet, high-force unimanual handgrip contractions are known to increase ipsilateral brain activation in control participants, and it remains to be determined if high-force contractions with the less-affected limb would promote ipsilateral brain activation in participants with stroke (i.e., the ipsilesional hemisphere). Therefore, this study aimed to determine how parametric increases in handgrip force during repeated contractions with the less-affected limb impacts brain activity bilaterally in participants with stroke and in a cohort of neurologically intact controls. Participants performed repeated submaximal contractions at 25%, 50%, and 75% of their maximum voluntary contraction during separate functional magnetic resonance imaging brain scans. Brain activation during the tasks was quantified as the percent change from resting levels. In this study, higher force contractions were found to increase brain activation in the ipsilesional (stroke)/ipsilateral (controls) hemisphere in both groups (p = .002), but no between group differences were observed. These data suggest that high-force exercise with the less-affected limb may promote ipsilesional cortical plasticity to promote motor recovery of the affected-limb in participants with stroke.

Incidence and trends of limb amputation in first nations and general population in Saskatchewan, 2006-2019.

BACKGROUND: There is conflicting evidence whether limb amputation (LA) disproportionately affects indigenous populations. To better understand this disparity, we compared the LA incidence rate between First Nations persons registered under the Indian Act of Canada (RI) and the general population (GP) in Saskatchewan. METHODS: We used Saskatchewan's retrospective administrative data containing hospital discharge LA cases, demographic characteristics (age and sex), and residents population reported in the database stratified by RI and GP from 2006-2019. The LA cases for each stratified group were first disaggregated into three broad categories: overall LA (all reported LA), primary LA (first reported LA), and subsequent LA (revision or contralateral LA), with each category further split into the level of amputation defined as major amputation (through/above the ankle/wrist joint) and minor amputation (below the ankle/wrist joint). LA rates were calculated using LA cases as the numerator and resident population as the denominator. Joinpoint and negative binomial regressions were performed to explore the trends further. RESULTS: Overall, there were 1347 RI and 4520 GP LA cases reported in Saskatchewan from 2006-2019. Primary LA made up approximately 64.5% (869) of RI and 74.5% (3369) of GP cases, while subsequent LA constituted 35.5% (478) of RI and 25.5% (1151) of GP cases. The average age-adjusted LA rate was 153.9 ± 17.3 per 100,000 in the RI cohort and 31.1 ± 2.3 per 100,000 in the GP cohort. Overall and primary LA rates for the GP Group declined 0.7% and 1.0%, while subsequent LA increased 0.1%. An increased LA rate for all categories (overall 4.9%, primary 5.1%, and subsequent 4.6%) was identified in the RI group. Overall, minor and major LA increased by 6.2% and 3.3%, respectively, in the RI group compared to a 0.8% rise in minor LA and a 6.3% decline in major LA in the GP group. RI females and males were 1.98-1.66 times higher risk of LA than their GP counterparts likewise, RI aged 0-49 years and 50+ years were 2.04-5.33 times higher risk of LA than their GP cohort. Diabetes mellitus (DM) was the most prevalent amputation predisposing factor in both groups with 81.5% of RI and 54.1% of GP diagnosed with DM. Also, the highest proportion of LA was found in the lowest income quintile for both groups (68.7% for RI and 45.3% for GP). CONCLUSION: Saskatchewan's indigenous individuals, specifically First Nations persons registered under the Indian Act of Canada, experience LA at a higher rate than the general population. This disparity exists for all variables examined, including overall, primary, and subsequent LA rates, level of amputation, sex, and age. Amplification of the disparities will continue if the rates of change maintain their current trajectories. These results underscore the need for a better understanding of underlying causes to develop a targeted intervention in these groups.

Investigating proactive balance control in individuals with incomplete spinal cord injury while walking on a known slippery surface.

BACKGROUND: Up to 83 % of individuals with incomplete spinal cord injury (iSCI) experience ≥ 1 fall/year. Individuals with iSCI employ more cautious walking strategies than able-bodied (AB) individuals during normal walking. Whether individuals with iSCI can use proactive balance strategies to adapt to expected slip perturbations/reduce slip severity while walking has not been previously assessed. METHODS: 19 individuals with iSCI (AIS D; 14 males; 61 ± 18 years) and 17 AB individuals (13 males; 61 ± 18 years) completed 3 walking conditions: normal walking trials, an unexpected slip trial, and expected slip trials. Steel rollers induced a slip in the antero-posterior (AP) direction. Outcome variables included step length, center of mass velocity, foot-floor angle, AP margin of stability, and maximum post-slip velocity (PSV). RESULTS: The iSCI group used a greater magnitude of cautious strategies (i.e. walking slower with shorter, flatter steps) than AB individuals in all conditions. However, the lack of significant interaction effects indicate that the proactive adaptations compared to normal walking (i.e. walking slower with shorter, flatter steps, and a more anterior xCOM-position) were similar between the two groups (AB & iSCI). Both groups showed a similar rate of adaptation (after just 1 slip) and these feedforward changes were maintained throughout the remaining slip trials which was effective at reducing maximum PSV. CONCLUSIONS: Individuals with iSCI use proactive balance strategies to adapt to a known slippery surface in a similar manner to AB individuals both in terms of the proportion and timing of adaptation.

Development of employment indicators to advance the quality of spinal cord injury rehabilitation care: SCI-High Project.

CONTEXT: Employment and Return to Work (RTW) rates following spinal cord injury/disease (SCI/D) are low due to individual and impairments characteristics, secondary health conditions, social and environmental barriers, prior work experience, workplace supports and resources, and physical or psychosocial work demands. To improve RTW, the SCI-High Project team developed a set of Employment structure, process, and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS: A pan-Canadian Working Group of diverse stakeholders: (1) defined the Employment construct; (2) conducted a systematic search of available outcomes measures; (3) constructed a Driver diagram summarizing factors associated with employment. Subsequent facilitated meetings allowed for the creation of structure and process indicators, and the selection of outcome indicators. RESULTS: The structure indicator is the proportion of SCI/D rehabilitation programs with an employment resource center. The process indicator is the proportion of SCI/D rehabilitation inpatients who receive an employment assessment during inpatient rehabilitation. The intermediary and final outcome measures are the Readiness for Return-to-Work Scale (RRTW) and Work Productivity and Activity Impairment (WPAI). Scale A of the RRTW for those who are unemployed and Scale B of RRTW and WPAI will be used for those who are employed. CONCLUSION: This framework of Employment indicators intends to support the RTW needs of persons with SCI/D by ensuring that rehabilitation professionals provide opportunities to explore RTW within the first 18 months after rehab admission. Increased employment rates have the potential to enhance the wellbeing, health, and longevity of individuals with SCI/D.

Development of community participation indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

Community participation following spinal cord injury/disease (SCI/D) can be challenging due to associated primary impairments and secondary health conditions as well as difficulties navigating both the built and social-emotional environment. To improve the quality of SCI/D rehabilitation care to optimize community participation, the SCI-High Project developed a set of structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission.A pan-Canadian Working Group of diverse stakeholders: (1) defined the community participation construct; (2) conducted a systematic review of available outcomes and their psychometric properties; (3) constructed a Driver diagram summarizing available evidence associated with community participation; and (4) prepared a process map. Facilitated meetings allowed selection and review of a set of structure, process and outcome indicators.The structure indicator is the proportion of SCI/D rehabilitation programs with availability of transition living setting/independent living unit. The process indicators are the proportion of SCI/D rehabilitation inpatients who experienced: (a) a therapeutic community outing prior to rehabilitation discharge; and, (b) those who received a pass to go home for the weekend. The intermediary and final outcome measures are the Moorong Self-Efficacy Scale and the Reintegration to Normal Living Index.The proposed indicators have the potential to inform whether inpatient rehabilitation for persons with SCI/D can improve self-efficacy and lead to high levels of community participation post-rehabilitation discharge.

Conception and development of Self-Management indicators to advance the quality of spinal cord injury rehabilitation: SCI-High Project.

CONTEXT: Although self-management is linked to reduced secondary health complications (SHCs) and enhanced overall quality of life post-spinal cord injury or disease (SCI/D), it is poorly integrated into the current rehabilitation process. Promoting self-management and assuring equity in care delivery is critical. Herein, we describe the selection of Self-Management structure, process and outcome indicators for adults with SCI/D in the first 18 months after rehabilitation admission. METHODS: Experts in self-management across Canada completed the following tasks: (1) defined the Self-Management construct; (2) conducted a systematic search of available outcomes and their psychometric properties; and (3) created a Driver diagram summarizing available evidence related to Self-Management. Facilitated meetings allowed development and selection following rapid-cycle evaluations of proposed structure, process and outcome indicators. RESULTS: The structure indicator is the proportion of staff with appropriate education and training in self-management principles. The process indicator is the proportion of SCI/D inpatients who have received a self-management assessment related to specific patient self-management goal(s) within 30 days of admission. The outcome indicator is the Skill and Technique Acquisition, and Self-Monitoring and Insight subscores of the modified Health Education Impact Questionnaire. CONCLUSION: The structure indicator will heighten awareness among administrators and policy makers regarding the need to provide staff with ongoing training related to promoting self-management skill acquisition. Successful implementation of the Self-Management process and outcome indicators will promote self-management education and skill acquisition as a rehabilitation priority, allow for personalization of skills related to the individual's self-management goal(s), and empower individuals with SCI/D to manage their health and daily activities while successfully integrating into the community.

A Scoping Review of Self-Management Interventions Following Spinal Cord Injury.

Objective: To conduct a scoping review to identify what components of self-management are embedded in self-management interventions for spinal cord injury (SCI). Methods: In accordance with the approach and stages outlined by Arksey and O'Malley (2005), a comprehensive literature search was conducted using five databases. Study characteristics were extracted from included articles, and intervention descriptions were coded using Practical Reviews in Self-Management Support (PRISMS) (Pearce et al, 2016), Barlow et al (2002), and Lorig and Holman's (2003) taxonomy. Results: A total of 112 studies were included representing 102 unique self-management programs. The majority of the programs took an individual approach (52.0%) as opposed to a group (27.4%) or mixed approach (17.6%). While most of the programs covered general information, some provided specific symptom management. Peers were the most common tutor delivering the program material. The most common Barlow components included symptom management (n = 44; 43.1%), information about condition/treatment (n = 34; 33.3%), and coping (n = 33; 32.4%). The most common PRISMS components were information about condition and management (n = 85; 83.3%), training/rehearsal for psychological strategies (n = 52; 51.0%), and lifestyle advice and support (n = 52; 51.0%). The most common Lorig components were taking action (n = 62; 60.8%), resource utilization (n = 57; 55.9%), and self-tailoring (n = 55; 53.9%). Conclusion: Applying self-management concepts to complex conditions such as SCI is only in the earliest stages of development. Despite having studied the topic from a broad perspective, this review reflects an ongoing program of research that links to an initiative to continue refining and testing self-management interventions in SCI.