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.

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.

"There are still a lot of things that I need": a qualitative study exploring opportunities to improve the health services of First Nations People with arthritis seen at an on-reserve outreach rheumatology clinic.

BACKGROUND: Arthritis is a highly prevalent disease and leading cause of disability in the Indigenous population. A novel model of care consisting of a rheumatology outreach clinic in an on-reserve primary healthcare center has provided service to an Indigenous community in Southern Alberta since 2010. Despite quality assessments suggesting this model of care improves accessibility and is effective in meeting treatment targets, substantial improvements in patient-reported outcomes have not been realized. Therefore, the objective of this study was to explore the experiences of Indigenous persons with arthritis and healthcare providers involved in this model of care to inform the development of health service improvements that enhance patient outcomes. METHODS: This was a narrative-based qualitative study involving a purposeful sample of 32 individuals involved in the Indigenous rheumatology model of care. In-depth interviews were conducted to elicit experiences with the existing model of care and to encourage reflections on opportunities to improve it. A two-stage analysis was conducted. The first stage aimed to produce a narrative synthesis of concepts through a dialogical method comparing people with arthritis and health providers' narratives. The second stage involved a collective effort to synthesize concepts and propose specific recommendations to improve the quality of the current model of care. Triangulation, through participant checking and discussion among researchers, was used to increase the validity of the final recommendations. RESULTS: Ten Indigenous people with arthritis lived experience, 14 health providers and 8 administrative staff were interviewed. One main overarching theme was identified, which reflected the need to provide services that improve people's physical and mental functioning. Further, the following specific recommendations were identified: 1) enhancing patient-provider communication, 2) improving the continuity of the healthcare service, 3) increasing community awareness about the presence and negative impact of arthritis, and 4) increasing peer connections and support among people living with arthritis. CONCLUSIONS: Improving the quality of the current Indigenous rheumatology model of care requires implementing strategies that improve functioning, patient-provider communication, continuity of care, community awareness and peer support. A community-based provider who supports people while navigating health services could facilitate the implementation of these strategies.

Epidemiology and socioeconomic impact of the rheumatic diseases on indigenous people: an invisible syndemic public health problem.

Epidemiological studies in Latin America suggest indigenous people lack proper healthcare for musculoskeletal (MSK) and rheumatic diseases. OBJECTIVES: This study aimed to estimate the prevalence of MSK disorders and rheumatic diseases in eight Latin American indigenous communities, and to identify which factors influence such prevalence using network analysis and syndemic approach. METHODS: This is a cross-sectional, community-based census study according to Community-Oriented Program for the Control of Rheumatic Diseases methodology. Individuals with MSK pain, stiffness or swelling in the past and/or during the last 7 days were evaluated by participating physicians. A descriptive, univariable and multivariable analysis was performed, followed by a network analysis. RESULTS: We surveyed 6155 indigenous individuals with a mean age of 41.2 years (SD 17.6; range 18-105); 3757 (61.0%) were women. Point prevalence in rank order was: low back pain in 821 (13.3%); osteoarthritis in 598 (9.7%); rheumatic regional pain syndromes in 368 (5.9%); rheumatoid arthritis in 85 (1.3%); undifferentiated arthritis in 13 (0.2%); and spondyloarthritis in 12 (0.1%). There were marked variations in the prevalence of each rheumatic disease among the communities. Multivariate models and network analysis revealed a complex relationship between rheumatic diseases, comorbidities and socioeconomic conditions. CONCLUSIONS: The overall prevalence of MSK disorders in Latin American indigenous communities was 34.5%. Although low back pain and osteoarthritis were the most prevalent rheumatic diseases, wide variations according to population groups occurred. The relationship between rheumatic diseases, comorbidities and socioeconomic conditions allows taking a syndemic approach to the study.

The Impact of Osteoarthritis on the Functioning and Health Status of a Low-Income Population: An Example of a Disability Paradox.

OBJECTIVE: The aim of this study was to measure the impact of osteoarthritis on the functioning and health status of individuals living in a low-income urban community in Mexico. METHODS: We conducted a cross-sectional, community-based study from December 2014 to November 2015, using the Community Oriented Program for Control of Rheumatic Diseases methodology to identify cases of musculoskeletal disease in a sample of adults older than 18 years in Pueblo Nuevo, Apodaca, Mexico. Two rheumatologists confirmed all cases of osteoarthritis (OA) using predefined criteria. Functioning was evaluated through (a) self-report of difficulty doing personal care, work, and leisure activities; (b) the modified Stanford Health Assessment Questionnaire-Disability Index; and (c) the Timed Up and Go test. Health status was evaluated using the EuroQoL 5 Dimensions. Statistical analyses were performed using χ tests and logistic regression models. RESULTS: Four hundred thirty-nine individuals with a mean age of 45.2 years were included, and 83 cases of OA were confirmed. The presence of OA was not significantly associated with having difficulties to do personal care, work, or leisure activities, but it was significantly associated with a higher Health Assessment Questionnaire-Disability Index score, longer time to complete the Timed Up and Go, and lower health status. CONCLUSIONS: Osteoarthritis is associated with having higher disability and worse health status in the community studied. A disability paradox was detected as some individuals perceived disability for doing standard activities but did not present disability performing their real-life activities. This underlies the importance of addressing the mental dimension during the management of this population.

Culture-sensitive adaptation and validation of the community-oriented program for the control of rheumatic diseases methodology for rheumatic disease in Latin American indigenous populations.

The purpose of the study is to validate a culturally sensitive adaptation of the community-oriented program for the control of rheumatic diseases (COPCORD) methodology in several Latin American indigenous populations. The COPCORD Spanish questionnaire was translated and back-translated into seven indigenous languages: Warao, Kariña and Chaima (Venezuela), Mixteco, Maya-Yucateco and Raramuri (Mexico) and Qom (Argentina). The questionnaire was administered to almost 100 subjects in each community with the assistance of bilingual translators. Individuals with pain, stiffness or swelling in any part of the body in the previous 7 days and/or at any point in life were evaluated by physicians to confirm a diagnosis according to criteria for rheumatic diseases. Overall, individuals did not understand the use of a 0-10 visual analog scale for pain intensity and severity grading and preferred a Likert scale comprising four items for pain intensity (no pain, minimal pain, strong pain, and intense pain). They were unable to discriminate between pain intensity and pain severity, so only pain intensity was included. For validation, 702 subjects (286 male, 416 female, mean age 42.7 ± 18.3 years) were interviewed in their own language. In the last 7 days, 198 (28.2 %) subjects reported having musculoskeletal pain, and 90 (45.4 %) of these had intense pain. Compared with the physician-confirmed diagnosis, the COPCORD questionnaire had 73.8 % sensitivity, 72.9 % specificity, a positive likelihood ratio of 2.7 and area under the receiver operating characteristic curve of 0.73. The COPCORD questionnaire is a valid screening tool for rheumatic diseases in indigenous Latin American populations.

Self-management interventions for chronic disease: a systematic scoping review.

OBJECTIVE: To investigate the contributions of physiotherapy and occupational therapy to self-management interventions and the theoretical models used to support these interventions in chronic disease. DATA SOURCES: We conducted two literature searches to identify studies that evaluated self-management interventions involving physiotherapists and occupational therapists in MEDLINE, the Cochrane Library, CINAHL, EMBASE, AMED (Allied and Complementary Medicine), SPORTdiscus, and REHABDATA databases. STUDY SELECTION: Four investigator pairs screened article title and abstract, then full text with inclusion criteria. Selected articles (n = 57) included adults who received a chronic disease self-management intervention, developed or delivered by a physiotherapist and/or an occupational therapist compared with a control group. DATA EXTRACTION: Four pairs of investigators performed independent reviews of each article and data extraction included: (a) participant characteristics, (b) the self-management intervention, (c) the comparison intervention, (d) outcome measures, construct measured and results. DATA SYNTHESIS: A total of 47 articles reported the involvement of physiotherapy in self-management compared with 10 occupational therapy articles. The type of chronic condition produced different yields: arthritis n = 21 articles; chronic obstructive pulmonary disease and chronic pain n = 9 articles each. The theoretical frameworks most frequently cited were social cognitive theory and self-efficacy theory. Physical activity was the predominant focus of the self-management interventions. Physiotherapy programmes included disease-specific education, fatigue, posture, and pain management, while occupational therapists concentrated on joint protection, fatigue, and stress management. CONCLUSIONS: Physiotherapists and occupational therapists make moderate contributions to self-management interventions. Most of these interventions are disease-specific and are most frequently based on the principles of behaviour change theories.

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.

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.

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.

Peripheral neuropathy in patients with gout, beyond focal nerve compression: a cross-sectional study.

Neuropathies secondary to tophus compression in gout patients are well known; however, limited data exist on other types of peripheral neuropathies (PN). Our aim was to describe PN frequency, characteristics, distribution, patterns, and associated factors in gout patients through clinical evaluation, a PN questionnaire, and nerve conduction studies (NCS). This cross-sectional descriptive study included consecutive gout patients (ACR/EULAR 2015 criteria) from our clinic. All underwent evaluation by Rheumatology and Rehabilitation departments, with IRB approval. Based on NCS, patients were categorized as PN + (presence) or PN- (absence). PN + patients were further classified as local peripheral neuropathy (LPN) or generalized somatic peripheral neuropathy (GPN). We enrolled 162 patients, 98% male (72% tophaceous gout). Mean age (SD): 49.4 (12) years; mean BMI: 27.9 (6.0) kg/m2. Comorbidities included dyslipidemia (53%), hypertension (28%), and obesity (23.5%). Abnormal NCS: 65% (n = 106); 52% LPN, 48% GPN. PN + patients were older, had lower education, and severe tophaceous gout. GPN patients were older, had lower education, and higher DN4 scores compared to LPN or PN- groups (p = 0.05); other risk factors were not significant. Over half of gout patients experienced neuropathy, with 48% having multiplex mononeuropathy or polyneuropathy. This was associated with joint damage and functional impairment. Mechanisms and risk factors remain unclear. Early recognition and management are crucial for optimizing clinical outcomes and quality of life in these patients. Key Points Peripheral neuropathies in gout patients had been scarcely reported and studied. This paper report that: • PN in gout is more frequent and more diverse than previously reported. • Mononeuropathies are frequent, median but also ulnar, peroneal and tibial nerves could be injured. • Unexpected, generalized neuropathies (polyneuropathy and multiplex mononeuropathy) are frequent and associated to severe gout. • The direct role of hyperuricemia /or gout in peripheral nerves require further studies.

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.

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.

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.

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.

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.

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.

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.

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.