Measures for Persons with Spinal Cord Injury to Monitor Their Transitions in Care, Health, Function, and Quality of Life Experiences and Needs: A Protocol for Co-Developing a Self-Evaluation Tool.

Evaluating the experiences of persons with spinal cord injury (PwSCI) regarding their transitions in care and changes in health, function, and quality of life is complex, fragmented, and involves multiple tools and measures. A staged protocol was implemented with PwSCI and relevant expert stakeholders initially exploring and selecting existing measures or tools through a modified Delphi process, followed by choosing one of two options. The options were to either support the use of the 10 selected tools from the Delphi method or to co-develop one unique condensed tool with relevant measures to evaluate all four domains. The stakeholders chose to co-develop one tool to be used by persons with SCI to monitor their transition experiences across settings and care providers. This includes any issues with care or support they needed to address at the time of discharge from acute care or rehabilitation and in the community at 3, 6, and 12 months or longer post-discharge. Once developed, the tool was made available online for the final stage of the protocol, which proposes that the tool be reliability tested prior to its launch, followed by validation testing by PwSCI.

Predicting inpatient rehabilitation length of stay for adults with traumatic spinal cord injury.

INTRODUCTION: Most post-injury traumatic spinal cord injury (TSCI) care occurs in the inpatient rehabilitation setting. The inpatient rehabilitation length of stay (R-LOS) has been shown to be a significant predictor of motor function restoration in persons with TSCI. Due to the complexity, and heterogeneity of individuals with TSCI, the R-LOS is challenging to predict at admission. PURPOSE: To identify the main predictors of R-LOS and derive an equation to estimate R-LOS in persons with TSCI. METHODS: This is a retrospective analysis of data from adults with TSCI from The Rick Hansen Spinal Cord Injury Registry in Alberta, Canada, who received rehabilitation care between May 10, 2005, and January 28, 2020. Multiple linear regression analysis was used to determine significant relationships between R-LOS and measures of participant demographics, length of stay, impairment and injury classification, and comorbidities. RESULTS: The analysis included 736 adults with TSCI from an eligible cohort of 1365. The median R-LOS was 65 days (IQR 39-99 days), ranging from 1 to 469 days. Multivariate linear regression analysis identified two significant predictors of R-LOS, total FIM score and the injury classification. This model was used to derive a R-LOS prediction equation, which explained 34% of the variance in R-LOS. CONCLUSION: We developed a simple equation to predict R-LOS based on the level of impairment and total FIM scores in persons with TSCI. These data have implications for health system planning, improvement, and innovation, and provide insights to support further research into the predictors of R-LOS, identification of higher-risk individuals.

Urinary tract infections and urinary bladder health experiences of persons with spinal cord injury in a Canadian province: A mixed methods study showcasing infection prevention as health inequity case.

CONTEXT/OBJECTIVE: Urinary tract infections (UTIs) are one of the most frequent secondary complications among people with spinal cord injury (SCI). The prevention and management of UTIs is prioritized by stakeholders across Canada. The purpose of this study was to gain an in-depth understanding of the urinary bladder (bladder) management experiences of people with SCI in Alberta communities, especially how UTIs are experienced and managed. DESIGN: Convergent mixed methods parallel databases variant. SETTING: Communities across Alberta, Canada. PARTICIPANTS: 39 survey participants and 19 interview participants, all with SCI. METHODS: One-on-one phone semi-structured interviews analyzed using thematic analysis. Quantitative surveys included demographic, multichoice, and Likert Scale questions analyzed using descriptive analysis. Both methods explored people with SCI's experiences with bladder management and UTIs. Qualitative and quantitative results were integrated through a comparison joint display table and meta-inferences. OUTCOME MEASURES: Qualitative themes and descriptive statistics further integrated as mixed core-statements. RESULTS: Bladder routine is central to daily life and maintaining bladder health, avoiding UTIs, is the priority. Several health inequities are related to (1) financial barriers dictating how bladder is managed, (2) low perceived support for appropriate bladder management, (3) low healthcare access to appropriate UTI management and (4) low providers' capacity to support bladder management and build trust with persons with SCI. CONCLUSION: Action is required to address identified health inequities, including improvement of financial support, like appropriate catheter coverage, decrease barriers to access appropriate care and improvement of providers' capacity to address SCI bladder care.

Evaluating Efficiency of a Provincial Telerehabilitation Service in Improving Access to Care During the COVID-19 Pandemic.

Scope: Early in the COVID-19 pandemic, community rehabilitation stakeholders from a provincial health system designed a novel telerehabilitation service. The service provided wayfinding and self-management advice to individuals with musculoskeletal concerns, neurological conditions, or post-COVID-19 recovery needs. This study evaluated the efficiency of the service in improving access to care. Methodology: We used multiple methods including secondary data analyses of call metrics, narrative analyses of clinical notes using artificial intelligence (AI) and machine learning (ML), and qualitative interviews. Conclusions: Interviews revealed that the telerehabilitation service had the potential to positively impact access to rehabilitation during the COVID-19 pandemic, for individuals living rurally, and for individuals on wait lists. Call metric analyses revealed that efficiency may be enhanced if call handling time was reduced. AI/ML analyses found that pain was the most frequently-mentioned keyword in clinical notes, suggesting an area for additional telerehabilitation resources to ensure efficiency.

Co-design of a Community-based Rehabilitation Program to Decrease Musculoskeletal Disabilities in a Mayan-Yucateco Municipality.

BACKGROUND: Chronic musculoskeletal (MSK) diseases are an important cause of disability in the Mayan community of Chankom in Yucatán, Mexico. OBJECTIVE: To understand a community-based participatory research (CBPR) strategy implemented in Chankom to design a community-based rehabilitation (CBR) program for people living with MSK diseases. METHODS: Qualitative descriptive thematic analysis from an ethnographic work conducted in Chankom, during the implementation of a CBPR strategy from 2014 to 2017. RESULTS: Four main themes describe the main processes that formed our CBPR strategy: 1) forming and maintaining an alliance between academic and community members, 2) prioritizing community needs, 3) integrating local and global knowledge and 4) shared-decision-making. This CBPR strategy allowed the design of a CBR program formed by six main interventions: 1) health services coordination, 2) personal support, 3) community venous blood sampling services, 4) community specialized services, 5) health promotion, and 6) health transportation services. CONCLUSIONS: Co-designing a CBR program for people living with chronic MSK diseases in Chankom was possible through an extensive community engagement work structured around four main processes, including the essential principles of CBPR. The designed CBR program includes culturally sensitive interventions aimed at improving the quality, availability, accessibility, and acceptability of health care services. Moreover, the program mainly addressed the "health" component of the World Health Organization-CBR matrix, suggesting a need for a new CBPR cycle after it is implemented and evaluated in the future.

Epidemiology and healthcare utilization of First Nations peoples living with spinal cord injury in Alberta: an observational study to explore health inequities.

STUDY DESIGN: Retrospective observational cohort study. OBJECTIVES: Estimate spinal cord injury (SCI) prevalence in First Nations and non-First Nations populations and compare healthcare utilization as an indirect marker of health inequities. SETTING: Alberta, Canada. METHODS: We created a prevalent adult SCI cohort by identifying cases between April 1, 2002 and December 31, 2017 who were followed for common SCI complications and location of healthcare access from January 1, 2018 to December 31, 2019 using administrative data sources housed within Alberta Health Services (AHS). First Nations and non-First Nations SCI cohorts were divided into SCI etiology: traumatic SCI (TSCI) and non-traumatic SCI (NTSCI). Statistical analyses compared prevalence, demographics, healthcare utilization, and SCI complication rates. A secondary analysis was performed using case matching for demographics, injury type, injury level, and comorbidities. RESULTS: TSCI prevalence: 248 and 117 per 100,000 in First Nations and non-First Nations cohorts, respectively. NTSCI prevalence: 74 and 50 per 100,000 in First Nations and non-First Nations cohorts, respectively. Visit rates were higher in the TSCI First Nations cohort for visits to General Practitioner (GP), Emergency Department (ED), inpatient visits, and inpatient days with higher complication rates due to pulmonary, genitourinary, skin, and 'other' causes after case matching. Visits rates were higher in the NTSCI First Nations cohort for GP and specialists without differences in complication types after case matching. CONCLUSIONS: Significant differences exist between First Nations and non-First Nations cohorts living with SCI in Alberta, suggesting healthcare inequities against First Nations Peoples in this province.

Outcomes of Implementing a Webinar-Based Strategy to Improve Spinal Cord Injury Knowledge and Community Building: Convergent Mixed Methods Study.

BACKGROUND: COVID-19 disrupted services received by persons with spinal cord injury (SCI) worldwide. The International Disability Alliance declared the need for a disability-inclusive response to the COVID-19 crisis, as decreased access to health care services for individuals living with varying levels of function was unacceptable. As a result, an SCI community in Canada created a novel webinar-based strategy aimed at improving access to self-management information for people living with SCI and other stakeholders. However, although telehealth practices have previously been used effectively in SCI management and rehabilitation, little to no scholarship has investigated the outcomes of implementing a webinar-based telehealth strategy in this population. OBJECTIVE: This study aims to understand the outcomes of implementing the webinar series. Specifically, the authors aimed to determine the reach of the series; understand its impact on social connectedness, perceptions of disability, and overall quality of interactions among persons with SCI, their families, service providers, and the public at large; and explore the long-term sustainability of the initiative. METHODS: The authors implemented a community-based participatory strategy to define a convergent mixed methods design to triangulate qualitative and quantitative data collected simultaneously. Quantitative methods included pop-up questions administered during the live webinars, surveys administered following webinars, and an analysis of YouTube analytics. Qualitative methods included semistructured interviews with persons with SCI and health care providers who attended at least one webinar. The results were integrated, following methods adapted from Creswell and Clark. RESULTS: A total of 234 individuals attended at least 1 of the 6 webinars that took place during the 6-month study period. In total, 13.2% (31/234) of the participants completed the postwebinar survey, and 23% (7/31) participated in the semistructured interviews. The reach of the webinar series was mainly to persons with SCI, followed by health professionals, with most of them living in urban areas. The topics sexuality and research were the most viewed on YouTube. The knowledge disseminated during the webinars was mainly perceived as valid and useful, related to the fact that the presentation format involved people with lived experience and clinical experts. The webinars did not necessarily help build a new extended community of people involved in SCI but helped strengthen the existing community of people with SCI in Alberta. The webinar positively influenced the perceptions of normality and disability regarding people with SCI. The webinar format was perceived as highly usable and accessible. CONCLUSIONS: The webinar series was associated with improved participant knowledge of what is possible to achieve after an SCI and their perceptions of disability. The long-term implementation of this initiative is feasible, but further considerations to increase its reach to rural areas and ensure the integration of diverse individuals should be taken.

Mobilizing registry data for quality improvement: A convergent mixed-methods analysis and application to spinal cord injury.

Introduction: The rising prevalence of complex chronic conditions and growing intricacies of healthcare systems emphasizes the need for interdisciplinary partnerships to advance coordination and quality of rehabilitation care. Registry databases are increasingly used for clinical monitoring and quality improvement (QI) of health system change. Currently, it is unclear how interdisciplinary partnerships can best mobilize registry data to support QI across care settings for complex chronic conditions. Purpose: We employed spinal cord injury (SCI) as a case study of a highly disruptive and debilitating complex chronic condition, with existing registry data that is underutilized for QI. We aimed to compare and converge evidence from previous reports and multi-disciplinary experts in order to outline the major elements of a strategy to effectively mobilize registry data for QI of care for complex chronic conditions. Methods: This study used a convergent parallel-database variant mixed design, whereby findings from a systematic review and a qualitative exploration were analyzed independently and then simultaneously. The scoping review used a three-stage process to review 282 records, which resulted in 28 articles reviewed for analysis. Concurrent interviews were conducted with multidisciplinary-stakeholders, including leadership from condition-specific national registries, members of national SCI communities, leadership from SCI community organizations, and a person with lived experience of SCI. Descriptive analysis was used for the scoping review and qualitative description for stakeholder interviews. Results: There were 28 articles included in the scoping review and 11 multidisciplinary-stakeholders in the semi-structured interviews. The integration of the results allowed the identification of three key learnings to enhance the successful design and use of registry data to inform the planning and development of a QI initiative: enhance utility and reliability of registry data; form a steering committee lead by clinical champions; and design effective, feasible, and sustainable QI initiatives. Conclusion: This study highlights the importance of interdisciplinary partnerships to support QI of care for persons with complex conditions. It provides practical strategies to determine mutual priorities that promote implementation and sustained use of registry data to inform QI. Learnings from this work could enhance interdisciplinary collaboration to support QI of care for rehabilitation for persons with complex chronic conditions.

Novel Application of the World Health Organization Community-Based Rehabilitation Matrix to Understand Services' Contributions to Community Participation for Persons With Traumatic Spinal Cord Injury: A Mixed-Methods Study.

PURPOSE: The aim of the study is to use the World Health Organization community-based rehabilitation matrix for understanding services' contributions to foster community participation for people with traumatic spinal cord injury. METHODS: This study used a convergent mixed-methods design with a quantitative arm describing the frequency with which services contributed to 22 of the community-based rehabilitation-matrix elements and a qualitative arm involving document reviews and stakeholder interviews. Results were integrated following Onwuegbuzie and Teddlie's method (i.e., quan + QUAL). RESULTS: Twenty of the 22 (91%) of the World Health Organization community-based rehabilitation elements were addressed by traumatic spinal cord injury services. Five types of services were identified. Integrated results showed that the strengths of traumatic spinal cord injury services were as follows: (1) comprehensiveness; (2) essential medical services publicly funded; (3) numerous social protections available; and (4) highly active community-based organizations. Identified opportunities to improve these services were as follows: (1) increase specificity for traumatic spinal cord injury and (2) increase communication and integration among services. CONCLUSIONS: Services available for people with traumatic spinal cord injury in the province studied address most of the elements of the World Health Organization community-based rehabilitation matrix. However, lack of cohesion between services could create gaps that hinder community participation. Addressing these gaps could improve the quality of life and outcomes of people with traumatic spinal cord injury.

Inequity and vulnerability in Latin American Indigenous and non-Indigenous populations with rheumatic diseases: a syndemic approach.

Syndemics are a framework that documents health inequities and vulnerabilities in populations with rheumatic diseases. Compared with other approaches, syndemics are able to conjunctly consider epidemiological, biological, sociodemographic and economic factors, and their interactions. OBJECTIVE: To estimate health inequity and vulnerability among Indigenous and non-Indigenous populations with rheumatic and musculoskeletal diseases (RMD) in Latin America using the syndemic approach. DESIGN: This is a secondary analysis of a previously published large-scale study on the prevalence of RMD. SETTING: Studies carried out in five Latin American countries (Argentina, Colombia, Ecuador, Mexico and Venezuela). Health inequity and vulnerability in RMD were identified through a syndemic approach using network and cluster analysis. PARTICIPANTS: A total of 44 560 individuals were studied: 29.78% self-identified as Indigenous, 60.92% were female, the mean age was 43.25 years. Twenty clusters were identified in the Indigenous population and 17 in the non-Indigenous population. RESULTS: The variables associated with RMD among Indigenous populations were rurality, public health system, high joint biomechanical stress, greater pain, disability and alcoholism; and among non-Indigenous people they were being a woman, urban origin, older age, private health system, joint biomechanical stress, greater pain and disability. We identified different health inequities among patients with RMD (ie, lower educational attainment, more comorbidities), associated with factors such as Indigenous self-identification and rural residence. CONCLUSIONS: A syndemic approach enables us to identify health inequities in RMD, as shown by higher prevalence of comorbidities, disability and socioeconomic factors like lower educational attainment. These inequities exist for the overall population of patients with RMD, although it is more evident in Indigenous groups with added layers of vulnerability.

Identification of the NA+/K+-ATPase α-Isoforms in Six Species of Poison Dart Frogs and their Sensitivity to Cardiotonic Steroids.

Cardiotonic steroids (CTS) are a group of compounds known to be toxic due to their ability to inhibit the Na+/K+-ATPase (NKA), which is essential to maintain the balance of ions in animal cells. An evolutionary strategy of molecular adaptation to avoid self-intoxication acquired by CTS defended organisms and their predators is the structural modification of their NKA where specific amino acid substitutions confer resistant phenotypes. Several lineages of poison dart frogs (Dendrobatidae) are well known to sequester a wide variety of lipophilic alkaloids from their arthropod diet, however there is no evidence of CTS-sequestration or dietary exposure. Interestingly this study identified the presence of α-NKA isoforms (α1 and α2) with amino acid substitutions indicative of CTS-resistant phenotypes in skeletal muscle transcriptomes obtained from six species of dendrobatids: Phyllobates aurotaenia, Oophaga anchicayensis, Epipedobates boulengeri, Andinobates bombetes, Andinobates minutus, and Leucostethus brachistriatus, collected in the Valle del Cauca (Colombia). P. aurotaenia, A. minutus, and E. boulengeri presented two variants for α1-NKA, with one of them having these substitutions. In contrast, O. anchicayensis and A. bombetes have only one α1-NKA isoform with an amino acid sequence indicative of CTS susceptibility and an α2-NKA with one substitution that could confer a reduced affinity for CTS. The α1 and α2 isoforms of L. brachistriatus do not contain substitutions imparting CTS resistance. Our findings indicate that poison dart frogs express α-NKA isoforms with different affinities for CTS and the pattern of this expression might be influenced by factors related to evolutionary, physiological, ecological, and geographical burdens.

Exploring perceptions of using preference elicitation methods to inform clinical trial design in rheumatology: A qualitative study and OMERACT collaboration.

BACKGROUND: Clinical trial design requires value judgements and understanding patient preferences may help inform these judgements, for example when prioritizing treatment candidates, designing complex interventions, selecting appropriate outcomes, determining clinically important thresholds, or weighting composite outcomes. Preference elicitation methods are quantitative approaches that can estimate patients' preferences to quantify the absolute or relative importance of outcomes or other attributes relevant to the decision context. We aimed to explore stakeholder perceptions of using preference elicitation methods to inform judgements when designing clinical trials in rheumatology. METHODS: We conducted 1-on-1 semi-structured interviews with patients with rheumatic diseases and rheumatology clinicians/researchers, recruited using purposive and snowball sampling. Participants were provided pre-interview materials, including a video and a document, to introduce the topic of preference elicitation methods and case examples of potential applications to clinical trials. Interviews were conducted via Zoom and were audio-recorded and transcribed. We used thematic analysis to analyze our data. RESULTS: We interviewed 17 patients and 9 clinicians/researchers, until data and inductive thematic saturation were achieved within each group. Themes were grouped into overall perceptions, barriers, and facilitators. Patients and clinicians/researchers generally agreed that preference elicitation studies can improve clinical trial design, but that many considerations are required around preference heterogeneity and feasibility. A key barrier identified was the additional resources and expertise required to measure and incorporate preferences effectively in trial design. Key facilitators included developing guidance on how to use preference elicitation to inform trial design, as well as the role of external decision-makers in developing such guidance, and the need to leverage the movement towards patient engagement in research to encourage including patient preferences when designing trials. CONCLUSION: Our findings allowed us to consider the potential applications of patient preferences in trial design according to stakeholders within rheumatology who are involved in the trial process. Future research should be conducted to develop comprehensive guidance on how to meaningfully include patient preferences when designing clinical trials in rheumatology. Doing so may have important downstream effects for shared decision-making, especially given the chronic nature of rheumatic diseases.

Temporal-Spatial Distribution of Vibrio cholerae in Cuba: July 1997-December 2019.

INTRODUCTION: Vibrio cholerae is a microorganism that causes acute diarrheal diseases and cholera, one of the leading causes of global morbidity and mortality, especially in children under five years old. It is present in many regions and has been isolated from diverse sources such as water, soil and food. Surveillance of this microorganism in Cuba from 1985 through June 1997 showed circulation of non-epidemic non-O1/non-O139 serogroups, but surveillance continued to identify distribution of V. cholerae serotypes and serogroups in the different geographic regions of the country during the following years, due to the risk of introducing cholera-causing serogroups that provoked cholera epidemics in other countries of the region. OBJECTIVE: Describe the temporal‒spatial distribution of serogroups and serotypes of V. cholerae in Cuba. METHODS: A cross-sectional study was conducted that included isolates from passive surveillance of V. cholerae in 16 hygiene and epidemiology centers throughout Cuba from July 1997 through December 2019, submitted to the National Reference Laboratory for Acute Diarrheal Diseases of the Pedro Kourí Tropical Medicine Institute in Havana, Cuba. The timeline was subdivided into three five-year periods and one eight-year period. The centers submitting isolates were grouped into three geographical regions: western, central and eastern Cuba. A total of 1060 V. cholerae isolates were studied, from the 1438 samples sent from 15 Provincial Hygiene, Epidemiology and Microbiology Centers and the Municipal Hygiene, Epidemiology and Microbiology Center of the Isle of Youth Special Municipality. Genus, species and serotype of all specimens were studied and reviewed in the context of the outbreaks of acute diarrheal diseases reported in the country. RESULTS: All 1060 isolates were confirmed as V. cholerae. In the distribution by time period and region, the highest percentage occurred in the 2012‒2019 period, and the eastern region contributed the most isolates in all periods. Approximately 63.9% (677/1060) were from outbreaks, and in the 2012‒2019 period, the most epidemic-causing isolates came from the western region. Approximately 52.8% (560/1060) were identified as non-O1/non-O139 V. cholerae, and 47.2% (500/1060) as O1 V. cholerae; of these, 96.4% (482/500) corresponded to Ogawa serotype and 3.6% (18/500) to Inaba. Circulation of non-O1/non-O139 V. cholerae occurred throughout the entire period. The O1 serogroup began to circulate in 2012 and continued through 2016; however, since 2017, it has not been identified again. In the western region, there were smaller percentages of isolates of non-O1/non-O139 V. cholerae in all periods, except 2012‒2019. In that period, V. cholerae O1 was identified to a lesser degree in the central region. CONCLUSIONS: Vibrio cholerae circulated in all three Cuban regions during the years studied, with a higher percentage of isolates of the non-O1/non-O139 serogroup, which caused outbreaks or sporadic cases of diarrhea in the eastern region, with the exception of the 2012‒2019 period, when epidemic outbreaks of the O1 serogroup (which causes cholera) occurred in all three regions, with higher percentages in the western region.

A randomized, double-blind, placebo-controlled 12-week trial of infliximab in patients with juvenile-onset spondyloarthritis.

OBJECTIVE: To assess the efficacy and safety of infliximab versus placebo in the treatment of patients with juvenile-onset spondyloarthritis (JoSpA). METHODS: Phase III, randomized, double-blind, placebo-controlled trial of 12 weeks that included patients ≤ 18 years old with JoSpA not responding to nonsteroidal anti-inflammatory drugs, sulfasalazine, or methotrexate. Patients were randomly assigned 1:1 to the infusion of infliximab 5mg/kg or placebo; completers entered then an open-label extension (OLE) period of 42 weeks. The primary endpoint was the number of active joints. Secondary outcomes included the assessment of disease activity, tender entheses, spinal mobility, serum C-reactive protein (CRP), the Bath Ankylosing Spondylitis Disease Activity and Functional Index, and the Childhood Health Assessment Questionnaire (CHAQ). RESULTS: We randomized 12 patients to infliximab and 14 to placebo. No significant differences were found between groups at baseline. At week 12, the mean number of active joints was 1.4 (SD 2.4) in the infliximab group and 4.1 (SD 3.0) in the placebo group (p = 0.0002). A repeated-measures mixed model analysis that included all endpoints in the study demonstrated sustained favourable outcomes of infliximab for active joints, tender joints, swollen joints, and tender enthesis counts, as well as for CHAQ and CRP (p < 0.01). Adverse events were more frequent in the infliximab group, including infections and infusion reactions, but none of them was serious. CONCLUSION: Infliximab is efficacious for patients with JoSpA with an inadequate response to conventional treatment. No serious adverse events with the use of infliximab were observed.

Evaluating the impact of a novel telerehabilitation service to address neurological, musculoskeletal, or coronavirus disease 2019 rehabilitation concerns during the coronavirus disease 2019 pandemic.

Introduction: A novel telerehabilitation service provides wayfinding and self-management advice to persons with neurological, musculoskeletal, or coronavirus disease 2019 related rehabilitation needs. Method: We utilized multiple methods to evaluate the impact of the service. Surveys clarified health outcomes (quality of life, self-efficacy, social support) and patient experience (telehealth usability; general experience) 3-months post-call. We analysed associations between, and within, demographics and survey responses. Secondary analyses described health care utilization during the first 6 months. Results: Sixty-eight callers completed the survey (42% response rate). Self-efficacy was significantly related to quality of life, interpersonal support and becoming productive quickly using the service. Becoming productive quickly was significantly related to quality of life. Education level was related to ethnicity. Survey respondents' satisfaction and whether they followed the therapist's recommendations were not significantly associated with demographics. Administrative data indicated there were 124 callers who visited the emergency department before, on, or after their call. The average (SD) frequency of emergency department visits before was 1.298 times (1.799) compared to 0.863 times (1.428) after. Discussion: This study offers insights into the potential impact of the telerehabilitation service amidst pandemic restrictions. Usability measurements showed that callers were satisfied, corroborating literature from pre-pandemic contexts. The satisfaction and acceptability of the service does not supplant preferences for in-person visits. The survey sample reported lower quality of life compared with the provincial population, conflicting with pre-pandemic research. Findings may be due to added stressors associated with the pandemic. Future research should include population-level comparators to better clarify impact.

The Application of Preference Elicitation Methods in Clinical Trial Design to Quantify Trade-Offs: A Scoping Review.

BACKGROUND AND OBJECTIVE: Patients can express preferences for different treatment options in a healthcare context, and these can be measured with quantitative preference elicitation methods. OBJECTIVE: Our objective was to conduct a scoping review to determine how preference elicitation methods have been used in the design of clinical trials. METHODS: We conducted a scoping review to identify primary research studies, involving any health condition, that used quantitative preference elicitation methods, including direct utility-based approaches, and stated preference studies, to value health trade-offs in the context of clinical trial design. Studies were identified by screening existing systematic and scoping reviews and with a primary literature search in MEDLINE from 2010 to the present. We extracted study characteristics and the application of preference elicitation methods to clinical trial design according to the SPIRIT checklist from primary studies and summarized the findings descriptively. RESULTS: We identified 18 eligible studies. The included studies applied patient preferences to five areas of clinical trial design: intervention selection (n = 1), designing N-of-1 trials (n = 1), outcome selection and weighting composite and ordinal outcomes (n = 12), sample size calculations (n = 2), and recruitment (n = 2). Using preference elicitation methods led to different decisions being made, such as using preference-weighted composite outcomes instead of equally weighted composite outcomes. CONCLUSION: Preference elicitation methods are infrequently used to design clinical trials but may lead to changes throughout the trial that could affect the evidence generated. Future work should consider measurement challenges and explore stakeholder perceptions.

Exoskeleton use in acute rehabilitation post spinal cord injury: A qualitative study exploring patients' experiences.

CONTEXT/OBJECTIVE: Spinal cord injury (SCI) is intensely life altering, affecting multiple body systems and functions, including the ability to walk. Exoskeleton assisted walking (EAW) is a rehabilitation tool that aims to support locomotor training, yet little is known about the patient experience. The purpose of this qualitative study, part of a prospective observational case series, was to increase our understanding of SCI patient experience using a robotic exoskeleton in this acute post-injury period. DESIGN: A qualitative descriptive approach was implemented in this study, with the aim to explore and understand participants' experience with EAW training. PARTICIPANTS/SETTING: Nine of the 11 participants enrolled in the observational study agreed to participate in an interview. All participants had suffered a SCI, and had received their trauma care and inpatient rehabilitation at a tertiary center in Calgary, Alberta, Canada. RESULTS: The benefits to EAW use described by participants were primarily psychological and included the joy of eye level contact, excitement at being able to walk with assistance, improvement in mood, and hope for the future. Potential physiological benefits include increased strength, decreased spasticity and reduced pain. Challenges to EAW use include weakness and fatigue, and a fear of incontinence. CONCLUSION: Qualitative research will continue to be an important component in future research on the use of EAW training as part of the rehabilitation process. Increasing understanding of the participants experience with this novel therapeutic modality and technology will be fundamental to improve its implementation in clinical practice.

Patient and rheumatologist perspectives on tapering DMARDs in rheumatoid arthritis: a qualitative study.

OBJECTIVES: To understand the perspectives of patients and rheumatologists for tapering DMARDs in RA. METHODS: Using semi-structured interview guides, we conducted individual interviews and focus groups with RA patients and rheumatologists, which were audiotaped and transcribed. We conducted a pragmatic thematic analysis to identify major themes, comparing and contrasting different views on DMARD tapering between patients and rheumatologists. RESULTS: We recruited 28 adult patients with RA (64% women; disease duration 1-54 y) and 23 rheumatologists (52% women). Attitudes across both groups towards tapering DMARDs were ambivalent, ranging from wary to enthusiastic. Both groups expressed concerns, particularly the inability to 'recapture' the same level of disease control, while also acknowledging potential positive outcomes such as reduced drug harms. Patient tapering perspectives (whether to and when) changed over time and commonly included non-biologic DMARDs. Patient preferences were influenced by lived experiences, side effects, previous tapering experiences, disease trajectory, remission duration and current life roles. Rheumatologists' perspectives varied on timing and patient profile to initiate tapering, and were informed by both data and clinical experience. Patients expressed interest in shared decision-making (SDM) and close monitoring during tapering, with ready access to their health-care team if problems arose. Rheumatologists were generally open to tapering (not stopping), though sometimes only when requested by their patients. CONCLUSION: The perspectives of patients and rheumatologists on tapering DMARDs in RA vary and evolve over time. Rheumatologists should periodically discuss DMARD tapering with patients as part of SDM, and ensure monitoring and flare management plans are in place.