Exploring the Lived Experiences of Individuals With Spinal Cord Injury During the COVID-19 Pandemic.

The global spread of severe acute respiratory syndrome coronavirus 2019 (COVID-19) has affected over 100 countries and has led to the tragic loss of life, overwhelmed health care systems and severely impacted the global economy. Specifically, individuals living with spinal cord injury (SCI) are particularly vulnerable during the COVID-19 pandemic as they often face adverse impacts on their health, emotional well-being, community participation, and life expectancy. The objective of this study was to investigate the lived experience of individuals with SCI during the COVID-19 pandemic in Ontario, Canada. An exploratory design with a qualitative descriptive approach was used to address the study objective. Nine semi-structured interviews were conducted with individuals with traumatic and non-traumatic SCI (37-69 years, C3-L5, AIS A-D, and 5-42 years post-injury). Using reflexive thematic analysis, the following themes were created: (1) Caregiver exposure to COVID-19; (2) Staying physically active in quarantine; (3) Living in social isolation; (4) Difficulty obtaining necessary medical supplies; (5) Access to health services and virtual care during COVID-19; and (6) Fighting COVID-19 misinformation. This is one of the first studies to explore the impact of COVID-19 on individuals living with SCI in Ontario. This study contributes to a greater understanding of the challenges faced by individuals living with SCI and provides insight into how to better support and respond to the specific and unique needs of individuals with SCI and their families during a national emergency or pandemic.

Conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities: a scoping review.

Introduction: To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities. Methods: A protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched. Results: Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies a priori. The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt. Discussion: There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers. Systematic review registration: https://doi.org/10.17605/OSF.IO/2GRB4.

The use of alkaline phosphatase as a bone turnover marker after spinal cord injury: A scoping review of human and animal studies.

BACKGROUND: Serum alkaline phosphatase (ALP) is measured as an indicator of bone or liver disease. Bone-specific alkaline phosphatase (B-ALP) is an isoform of ALP found in the bone tissue which can predict fractures and heterotopic ossification. OBJECTIVE: The aim of this scoping review was to explore the current use of ALP and B-ALP in studies using humans or animal models of SCI, and to identify ways to advance future research using ALP and B-ALP as a bone marker after SCI. RESULTS: HUMAN STUDIES: 42 studies were included. The evidence regarding changes or differences in ALP levels in individuals with SCI compared to controls is conflicting. For example, a negative correlation between B-ALP and total femur BMD was observed in only one of three studies examining the association. B-ALP seemed to increase after administration of teriparatide, and to decrease after treatment with denosumab. The effects of exercise on ALP and B-ALP levels are heterogeneous and depend on the type of exercise performed. ANIMAL STUDIES: 11 studies were included. There is uncertainty regarding the response of ALP or B-ALP levels after SCI; levels increased after some interventions, including vibration protocols, curcumin supplementation, cycles in electromagnetic field or hyperbaric chamber. Calcitonin or bisphosphonate administration did not affect ALP levels. CONCLUSION: Researchers are encouraged to measure the bone-specific isoform of ALP rather than total ALP in future studies in humans of animal models of SCI.

Rehabilitation interventions to modify endocrine-metabolic disease risk in individuals with chronic spinal cord injury living in the community (RIISC): A systematic search and review of prospective cohort and case-control studies.

CONTEXT: Endocrine-metabolic disease (EMD) is associated with functional disability, social isolation, hospitalization and even death in individuals living with a chronic spinal cord injury (SCI). There is currently very low-quality evidence that rehabilitation interventions can reduce EMD risk during chronic SCI. Non-randomized trials and alternative study designs are excluded from traditional knowledge synthesis. OBJECTIVE: To characterize evidence from level 3-4 studies evaluating rehabilitation interventions for their effectiveness to improve EMD risk in community-dwelling adults with chronic SCI. METHODS: Systematic searches of MEDLINE PubMed, EMBASE Ovid, CINAHL, Cochrane Database of Systematic Reviews, and PsychInfo were completed. All longitudinal trials, prospective cohort, case-control studies, and case series evaluating the effectiveness of rehabilitation/therapeutic interventions to modify/associate with EMD outcomes in adults with chronic SCI were eligible. Two authors independently selected studies and abstracted data. Mean changes from baseline were reported for EMD outcomes. The Downs and Black Checklist was used to rate evidence quality. RESULTS: Of 489 articles identified, 44 articles (N = 842) were eligible for inclusion. Individual studies reported statistically significant effects of electrical stimulation-assisted training on lower-extremity bone outcomes, and the combined effects of exercise and dietary interventions to improve body composition and cardiometabolic biomarkers (lipid profiles, glucose regulation). In contrast, there were also reports of no clinically important changes in EMD outcomes, suggesting lower quality evidence (study bias, inconsistent findings). CONCLUSION: Longitudinal multicentre pragmatic studies involving longer-term exercise and dietary intervention and follow-up periods are needed to fully understand the impact of these rehabilitation approaches to mitigate EMD risk. Our broad evaluation of prospective cohort and case-control studies provides new perspectives on alternative study designs, a multi-impairment paradigm approach of studying EMD outcomes, and knowledge gaps related to SCI rehabilitation.

Development of the Canadian Spinal Cord Injury Best Practice (Can-SCIP) Guideline: Methods and overview.

INTRODUCTION: Spinal cord injury (SCI) is a life-altering injury that leads to a complex constellation of changes in an individual's sensory, motor, and autonomic function which is largely determined by the level and severity of cord impairment. Available SCI-specific clinical practice guidelines (CPG) address specific impairments, health conditions or a segment of the care continuum, however, fail to address all the important clinical questions arising throughout an individual's care journey. To address this gap, an interprofessional panel of experts in SCI convened to develop the Canadian Spinal Cord Injury Best Practice (Can-SCIP) Guideline. This article provides an overview of the methods underpinning the Can-SCIP Guideline process. METHODS: The Can-SCIP Guideline was developed using the Guidelines Adaptation Cycle. A comprehensive search for existing SCI-specific CPGs was conducted. The quality of eligible CPGs was evaluated using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument. An expert panel (n = 52) convened, and groups of relevant experts met to review and recommend adoption or refinement of existing recommendations or develop new recommendations based on evidence from systematic reviews conducted by the Spinal Cord Injury Research Evidence (SCIRE) team. The expert panel voted to approve selected recommendations using an online survey tool. RESULTS: The Can-SCIP Guideline includes 585 total recommendations from 41 guidelines, 96 recommendations that pertain to the Components of the Ideal SCI Care System section, and 489 recommendations that pertain to the Management of Secondary Health Conditions section. Most recommendations (n = 281, 48%) were adopted from existing guidelines without revision, 215 (36.8%) recommendations were revised for application in a Canadian context, and 89 recommendations (15.2%) were created de novo. CONCLUSION: The Can-SCIP Guideline is the first living comprehensive guideline for adults with SCI in Canada across the care continuum.

Evaluation of the quality of published SCI clinical practice guidelines using the AGREE II instrument: Results from Can-SCIP expert panel.

INTRODUCTION: Spinal cord injury (SCI) is a complex condition with substantial adverse personal, social and economic impacts necessitating evidence-based inter-professional care. To date, limited studies have assessed the quality of clinical practice guidelines (CPGs) within SCI. The aim of this study is to evaluate the quality of the development process and methodological rigour of published SCI CPGs across the care continuum from pre-hospital to community-based care. METHODS: Electronic health databases and indexes were searched to identify English or French language CPGs within SCI published within the last nine years with specific evidence-based recommendations applicable to the Canadian health care setting. Eligible CPGs were evaluated using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) instrument. RESULTS: A total of forty-one CPGs that met the inclusion criteria were appraised by at least four raters. There was high variability in quality. Twenty-seven CPGs achieved a good rigour of development domain score of >70%. Other standardized mean domain scores were scope and purpose (85.32%), stakeholder involvement (65.03%), clarity of presentation (84.81%), applicability (55.55%) and editorial independence (75.83%). The agreement between appraisers (intraclass correlation coefficient) was high (intraclass correlation coefficient > 0.80). CONCLUSION: There is a paucity of CPGs that address community-based specialized rehabilitation and community reintegration. Furthermore, many CPGs only focus on a single impairment at one time point in the care continuum. As SCI is a complex condition that results in multimorbidity and requires health monitoring and intervention across the lifespan, a rigorously developed CPG that addresses high-quality, interprofessional comprehensive care is needed.