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.

Background Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI & U. Objective This study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study. Methods The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative Results Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. Conclusions Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

We report the recruitment activities and outcomes of a multi-disease neuromuscular patient registry in Canada. The Canadian Neuromuscular Disease Registry (CNDR) registers individuals across Canada with a confirmed diagnosis of a neuromuscular disease. Diagnosis and contact information are collected across all diseases and detailed prospective data is collected for 5 specific diseases: Amyotrophic Lateral Sclerosis (ALS), Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (DM), Limb Girdle Muscular Dystrophy (LGMD), and Spinal Muscular Atrophy (SMA). Since 2010, the CNDR has registered 4306 patients (1154 pediatric and 3148 adult) with 91 different neuromuscular diagnoses and has facilitated 125 projects (73 academic, 3 not-for-profit, 3 government, and 46 commercial) using registry data. In conclusion, the CNDR is an effective and productive pan-neuromuscular registry that has successfully facilitated a substantial number of studies over the past 10 years.

No abstract

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.