PRISM :: Browsing by Author "Barnabe, Cheryl"

Browsing by Author "Barnabe, Cheryl"

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Open Access
A logic framework for addressing medical racism in academic medicine: an analysis of qualitative data
(2024-04-15) Roach, Pamela; Ruzycki, Shannon M.; Lithgow, Kirstie C.; McFadden, Chanda R.; Chikwanha, Adrian; Holroyd-Leduc, Jayna; Barnabe, Cheryl
Abstract Background Despite decades of anti-racism and equity, diversity, and inclusion (EDI) interventions in academic medicine, medical racism continues to harm patients and healthcare providers. We sought to deeply explore experiences and beliefs about medical racism among academic clinicians to understand the drivers of persistent medical racism and to inform intervention design. Methods We interviewed academically-affiliated clinicians with any racial identity from the Departments of Family Medicine, Cardiac Sciences, Emergency Medicine, and Medicine to understand their experiences and perceptions of medical racism. We performed thematic content analysis of semi-structured interview data to understand the barriers and facilitators of ongoing medical racism. Based on participant narratives, we developed a logic framework that demonstrates the necessary steps in the process of addressing racism using if/then logic. This framework was then applied to all narratives and the barriers to addressing medical racism were aligned with each step in the logic framework. Proposed interventions, as suggested by participants or study team members and/or identified in the literature, were matched to these identified barriers to addressing racism. Results Participant narratives of their experiences of medical racism demonstrated multiple barriers to addressing racism, such as a perceived lack of empathy from white colleagues. Few potential facilitators to addressing racism were also identified, including shared language to understand racism. The logic framework suggested that addressing racism requires individuals to understand, recognize, name, and confront medical racism. Conclusions Organizations can use this logic framework to understand their local context and select targeted anti-racism or EDI interventions. Theory-informed approaches to medical racism may be more effective than interventions that do not address local barriers or facilitators for persistent medical racism.
Open Access
Advancing health equity for Indigenous peoples in Canada: development of a patient complexity assessment framework
(2024-04-29) Sehgal, Anika; Henderson, Rita; Murry, Adam; Crowshoe, Lynden (.; Barnabe, Cheryl
Abstract Background Indigenous patients often present with complex health needs in clinical settings due to factors rooted in a legacy of colonization. Healthcare systems and providers are not equipped to identify the underlying causes nor enact solutions for this complexity. This study aimed to develop an Indigenous-centered patient complexity assessment framework for urban Indigenous patients in Canada. Methods A multi-phased approach was used which was initiated with a review of literature surrounding complexity, followed by interviews with Indigenous patients to embed their lived experiences of complexity, and concluded with a modified e-Delphi consensus building process with a panel of 14 healthcare experts within the field of Indigenous health to identify the domains and concepts contributing to health complexity for inclusion in an Indigenous-centered patient complexity assessment framework. This study details the final phase of the research. Results A total of 27 concepts spanning 9 domains, including those from biological, social, health literacy, psychological, functioning, healthcare access, adverse life experiences, resilience and culture, and healthcare violence domains were included in the final version of the Indigenous-centered patient complexity assessment framework. Conclusions The proposed framework outlines critical components that indicate the presence of health complexity among Indigenous patients. The framework serves as a source of reference for healthcare providers to inform their delivery of care with Indigenous patients. This framework will advance scholarship in patient complexity assessment tools through the addition of domains not commonly seen, as well as extending the application of these tools to potentially mitigate racism experienced by underserved populations such as Indigenous peoples.
Open Access
Barriers, supports, and effective interventions for uptake of human papillomavirus- and other vaccines within global and Canadian Indigenous peoples: a systematic review protocol
(2018-03-02) Mrklas, Kelly J; MacDonald, Shannon; Shea-Budgell, Melissa A; Bedingfield, Nancy; Ganshorn, Heather; Glaze, Sarah; Bill, Lea; Healy, Bonnie; Healy, Chyloe; Guichon, Juliet; Colquhoun, Amy; Bell, Christopher; Richardson, Ruth; Henderson, Rita; Kellner, James; Barnabe, Cheryl; Bednarczyk, Robert A; Letendre, Angeline; Nelson, Gregg S
Abstract Background Despite the existence of human papilloma virus (HPV) vaccines with demonstrated safety and effectiveness and funded HPV vaccination programs, coverage rates are persistently lower and cervical cancer burden higher among Canadian Indigenous peoples. Barriers and supports to HPV vaccination in Indigenous peoples have not been systematically documented, nor have interventions to increase uptake in this population. This protocol aims to appraise the literature in Canadian and global Indigenous peoples, relating to documented barriers and supports to vaccination and interventions to increase acceptability/uptake or reduce hesitancy of vaccination. Although HPV vaccination is the primary focus, we anticipate only a small number of relevant studies to emerge from the search and will, therefore, employ a broad search strategy to capture literature related to both HPV vaccination and vaccination in general in global Indigenous peoples. Methods Eligible studies will include global Indigenous peoples and discuss barriers or supports and/or interventions to improve uptake or to reduce hesitancy, for the HPV vaccine and/or other vaccines. Primary outcomes are documented barriers or supports or interventions. All study designs meeting inclusion criteria will be considered, without restricting by language, location, or data type. We will use an a priori search strategy, comprised of key words and controlled vocabulary terms, developed in consultation with an academic librarian, and reviewed by a second academic librarian using the PRESS checklist. We will search several electronic databases from date of inception, without restrictions. A pre-defined group of global Indigenous websites will be reviewed for relevant gray literature. Bibliographic searches will be conducted for all included studies to identify relevant reviews. Data analysis will include an inductive, qualitative, thematic synthesis and a quantitative analysis of measured barriers and supports, as well as a descriptive synthesis and quantitative summary of measures for interventions. Discussion To our knowledge, this study will contribute the first systematic review of documented barriers, supports, and interventions for vaccination in general and for HPV vaccination. The results of this study are expected to inform future research, policies, programs, and community-driven initiatives to enhance acceptability and uptake of HPV vaccination among Indigenous peoples. Systematic review registration PROSPERO Registration Number: CRD42017048844
Open Access
Body mass index and the risk of rheumatoid arthritis: a systematic review and dose-response meta-analysis
(BioMed Central, 2015-08) Liu, Yang; Barnabe, Cheryl
Open Access
Canadian Pregnancy Outcomes in Rheumatoid Arthritis and Systemic Lupus Erythematosus
(Hindawi Publishing Corporation, 2011-08-15) Barnabe, Cheryl; Faris, Peter D.; Quan, Hude
Open Access
Canadian Pregnancy Outcomes in Rheumatoid Arthritis and Systemic Lupus Erythematosus
(2011-10-19) Barnabe, Cheryl; Faris, Peter D.; Quan, Hude
Objective. To describe obstetrical and neonataloutcomes in Canadian women with rheumatoid arthritis (RA) orsystemic lupus erythematosus (SLE). Methods. Anadministrative database of hospitalizations for neonatal delivery(1998–2009) from Calgary, Alberta was searched to identifywomen with RA (38 pregnancies) or SLE (95 pregnancies), and womenfrom the general population matched on maternal age and year ofdelivery (150 and 375 pregnancies, resp.). Conditionallogistic regression was used to calculate odds ratios (OR) formaternal and neonatal outcomes, adjusting for parity. Results. Women with SLE had increased odds forpreeclampsia or eclampsia (SLE OR 2.16 (95% CI 1.10–4.21;); RA OR 2.33 (95% CI 0.76–7.14; )). Women with SLEhad increased odds for cesarean section after adjustment fordysfunctional labour, instrumentation and previous cesareansection (OR 3.47 (95% CI 1.67–7.22; )). Neonates born towomen with SLE had increased odds of prematurity (SLE OR 6.17(95% CI 3.28–11.58; ); RA OR 2.66 (95% CI 0.90–7.84;)) and of SGA (SLE OR 2.54 (95% CI 1.42–4.55; ); RAOR 2.18 (95% CI 0.84–5.66; )) after adjusting for maternalhypertension. There was no excess risk of congenital defects inneonates. Conclusions. There is increased obstetrical and neonatal morbidityin Canadian women with RA or SLE.
Open Access
Development and Testing of Cardiovascular Quality Indicators for Rheumatoid Arthritis
(2015-12-04) Barber, Claire; Marshall, Deborah; Esdaile, John; Barnabe, Cheryl; Faris, Peter; Martin, Liam
Rheumatoid arthritis (RA) is an autoimmune inflammatory arthritis with a 50% increased risk of cardiovascular disease (CVD) related deaths. Traditional CVD risk factors including smoking, hypertension and diabetes may be under-identified and/or undertreated in RA, indicating a gap in care. Quality indicators (QIs) are an important tool for quality improvement and are lacking in this area. The objectives of this dissertation were to: (1) identify existing recommendations pertaining to screening and management of CVD risk in RA; (2) to develop a set of CVD QIs for RA based on the best practices; and (3) to test the QIs in clinical practice. A systematic review of existing CVD QIs and guidelines was conducted (Study 1). All CVD recommendations from high quality guidelines and relevant quality measures were abstracted and best practices in RA were identified. In Study 2, a panel of cardiologists and rheumatologists developed a set of CVD QIs for RA based on best the practices identified. The QIs were presented to an international panel of experts through a novel online modified Delphi process where they were rated and discussed over 3 rounds. In the final study, performance on the CVD QIs was evaluated in 170 early and biologic treated RA patients. Based on the process described above, 11 CVD QIs for RA were developed and were rated as highly relevant and valid by our international panel of experts. This was the first time the online platform was used for QI development and it demonstrated many advantages. Performance on the QIs from our cohort suggests under screening and inconsistent management of CVD risk factors. Also evident, was that our patients had a high burden of obesity, hypertension and smoking, suggesting this is a clinically meaningful gap in care. The primary area for future improvement was noted for QIs relating to communication of CVD risk and coordination of care between rheumatology and primary care. Therefore, future efforts should focus on improving coordination of CVD care as well as improving efficiency of QI measurement and reporting for timely and effective improvements in CVD care.
Open Access
Development of an interdisciplinary early rheumatoid arthritis care pathway
(2022-06-25) Gukova, Xenia; Hazlewood, Glen S.; Arbillaga, Hector; MacMullan, Paul; Zimmermann, Gabrielle L.; Barnabe, Cheryl; Choi, May Y.; Barber, Megan R. W.; Charlton, Alexandra; Job, Becky; Osinski, Kelly; Hartfeld, Nicole M. S.; Knott, Marlene W.; Pirani, Paris; Barber, Claire E. H.
Abstract Background To develop an interdisciplinary care pathway for early rheumatoid arthritis (RA) including referral triage, diagnosis, and management. Methods Our process was a four-phase approach. In Phase 1, an anonymous survey was electronically distributed to division rheumatologists. This provided data to a small interprofessional working group of rheumatology team members who drafted an initial care pathway informed by evidence-based practice in Phase 2. In Phase 3, an education day was held with approximately 40 physicians (rheumatologists and rheumatology residents), members of our interprofessional team, and two clinic managers to review the proposed care elements through presentations and small group discussions. The care pathway was revised for content and implementation considerations based on feedback received. Implementation of the care pathway and development of strategies for evaluation is ongoing across multiple practice sites (Phase 4). Results Our care pathway promotes an approach to patient-centered early RA care using an interdisciplinary approach. Care pathway elements include triage processes, critical diagnostics, pre-treatment screening and vaccinations, and uptake of suggested RA pharmacologic treatment using shared decision-making strategies. Pathway implementation has been facilitated by nursing protocols and evaluation includes continuous monitoring of key indicators. Conclusion The ‘Calgary Early RA Care Pathway’ emphasizes a patient-centered and interdisciplinary approach to early RA identification and treatment. Implementation and evaluation of this care pathway is ongoing to support, highest quality care for patients.
Open Access
Exploring structural barriers to diabetes self-management in Alberta First Nations communities
(2018-12-03) Kulhawy-Wibe, Stephanie; King-Shier, Kathryn M; Barnabe, Cheryl; Manns, Braden J; Hemmelgarn, Brenda R; Campbell, David J T
Abstract Background Type 2 diabetes is highly prevalent in Canadian First Nations (FN) communities. FN individuals with diabetes are less likely to receive guideline recommended care and access specialist care. They are also less likely to be able to engage in optimal self-management behaviours. While the systemic and racial contributors to this problem have been well described, individuals’ experiences with structural barriers to care and self-management remain under-characterized. Methods We utilized qualitative methods to gain insight into the structural barriers to self-management experienced by FN individuals with diabetes. We conducted a qualitative descriptive analysis of a subcohort of patients with diabetes from FN communities (n = 5) from a larger qualitative study. Using detailed semi-structured telephone interviews, we inquired about participants’ diabetes and barriers to diabetes self-management. Inductive thematic analysis was performed in duplicate using NVivo 10. Results The structural barriers faced by this population were substantial yet distinct from those described by non-FN individuals with diabetes. For example, medication costs, which are usually cited as a barrier to care, are covered for FN persons with status. The barriers to diabetes self-management that were commonly experienced in this cohort included transportation-related difficulties, financial barriers to uninsured health services, and lack of accessible diabetes education and resultant knowledge gaps. Conclusions FN Albertans with diabetes face a myriad of barriers to self-management, which are distinct from the Non-FN population. In addition to the barriers introduced by colonialism and historical injustices, finances, geographic isolation, and lack of diabetes education each impede optimal management of diabetes. Programs targeted at addressing FN-specific barriers may improve aspects of diabetes self-management in this population.
Open Access
First Nations emergency care in Alberta: descriptive results of a retrospective cohort study
(2021-05-04) McLane, Patrick; Barnabe, Cheryl; Holroyd, Brian R; Colquhoun, Amy; Bill, Lea; Fitzpatrick, Kayla M; Rittenbach, Katherine; Healy, Chyloe; Healy, Bonnie; Rosychuk, Rhonda J
Abstract Background Worse health outcomes are consistently reported for First Nations people in Canada. Social, political and economic inequities as well as inequities in health care are major contributing factors to these health disparities. Emergency care is an important health services resource for First Nations people. First Nations partners, academic researchers, and health authority staff are collaborating to examine emergency care visit characteristics for First Nations and non-First Nations people in the province of Alberta. Methods We conducted a population-based retrospective cohort study examining all Alberta emergency care visits from April 1, 2012 to March 31, 2017 by linking administrative data. Patient demographics and emergency care visit characteristics for status First Nations persons in Alberta, and non-First Nations persons, are reported. Frequencies and percentages (%) describe patients and visits by categorical variables (e.g., Canadian Triage and Acuity Scale). Means, medians, standard deviations and interquartile ranges describe continuous variables (e.g., age). Results The dataset contains 11,686,288 emergency care visits by 3,024,491 unique persons. First Nations people make up 4% of the provincial population and 9.4% of provincial emergency visits. The population rate of emergency visits is nearly 3 times higher for First Nations persons than non-First Nations persons. First Nations women utilize emergency care more than non-First Nations women (54.2% of First Nations visits are by women compared to 50.9% of non-First Nations visits). More First Nations visits end in leaving without completing treatment (6.7% v. 3.6%). Conclusions Further research is needed on the impact of First Nations identity on emergency care drivers and outcomes, and on emergency care for First Nations women.
Open Access
Impacts of racism on First Nations patients' emergency care: results of a thematic analysis of healthcare provider interviews in Alberta, Canada
(2022-06-21) McLane, Patrick; Mackey, Leslee; Holroyd, Brian R.; Fitzpatrick, Kayla; Healy, Chyloe; Rittenbach, Katherine; Plume, Tessy B.; Bill, Lea; Bird, Anne; Healy, Bonnie; Janvier, Kristopher; Louis, Eunice; Barnabe, Cheryl
Abstract Background First Nations people experience racism in society and in the healthcare system. This study aimed to document emergency care providers’ perspectives on care of First Nations patients. First Nations research partner organizations co-led all aspects of the research. Methods Sixteen semi-structured interviews were conducted with Alberta emergency department (ED) physicians and nurses between November 2019 and March 2020. Results ED providers reported that First Nations patients are exposed to disrespect through tone and body language, experience overt racism, and may be neglected or not taken seriously. They described impacts of racist stereotypes on patient care, and strategies they took as individuals to address patient barriers to care. Recognized barriers to care included communication, resources, access to primary care and the ED environment itself. Conclusions Results may inform the content of anti-racist and anti-colonial pedagogy that is contextually tailored to ED providers, and inform wider systems efforts to counter racism against First Nations members and settler colonialism within healthcare.
Open Access
Improving the health of Indigenous peoples: Exploring patient health complexity among urban Indigenous patients in Canada
(2023-04-20) Sehgal, Anika; Barnabe, Cheryl; Crowshoe, Lindsay (Lynden); Henderson, Rita; Murry, Adam
Patient complexity is deemed to arise from a combination of personal, social, and external factors that can complicate medical approaches to care. Formal tools called patient complexity assessment tools (PCATs) have been developed to help identify and address these factors. However, current PCATs are not inclusive of the unique determinants of health impacting Indigenous peoples, including those which arise from a legacy of colonialism. The current thesis aimed to address this gap by identifying the domains and components that should be included in a PCAT designed specifically for Indigenous patients. The first study of this thesis was a scoping review that explored the extent to which existing PCATs are inclusive of the realities that shape the health of Indigenous peoples. Findings identified a major gap in the capacity of existing PCATs to effectively address the realities that shape the health of Indigenous patients. The second study of this thesis was a qualitative study that explored how health complexity is experienced by urban Indigenous peoples and the contexts that allow health complexity to persist. Findings revealed material resource disparities and adverse interpersonal interactions within the healthcare environment to be sources of health complexity. The third study of this thesis aimed to determine the critical components that are indicative of health complexity among Indigenous patients. An Indigenous-centered patient complexity assessment framework was developed to serve as a source of reference for healthcare providers, and policy/decision makers. This thesis presents a framework to understand the root causes of health complexity among Indigenous patients, identify where there may be gaps in healthcare systems to effectively address complexity, and provide reference for future clinical tools that will assess complexity among Indigenous patients.
Open Access
Indigenous Mentorship for the Health Sciences
(2021-09) Atay, Elaine; Murry, Adam; MacInnis, Cara; Madsen, Joshua; Barnabe, Cheryl
The present study aimed to establish the credibility and attributed outcomes of an existing Indigenous mentorship (IM) model from the perspective of Indigenous mentees in health sciences and community research. Six mentees from mentorship networks associated with the Canadian Institute of Health Research’s IM Network Program participated in 1-2 hour long semi-structured interviews inquiring: 1) their resonance with the IM model, 2) personal stories related to the behavioural constructs in the model, 3) outcomes their mentors’ behaviours had on them, and 4) components they felt were missing from the model. Overall, the model resonated with participants. Of the model constructs, mentees discussed mentor behaviours associated with practicing relationalism the most frequently (26%), followed by fostering Indigenous identity development (23%), mentee-centered focus (21%), and imbuing criticality (16%). Advocacy (9%) and abiding by Indigenous ethics (5%) were addressed, but not given as much attention as the other constructs. Outcomes included positive career and work attitudes, engaging in more helping behaviours, motivation, overall well-being, and enhanced criticality. Recommendations to expand the model included incorporating: 1) additional mentor behaviours (transference of traditional knowledge, prayer, modeling resiliency, and engaging in trauma-informed practices), 2) higher-order dimensions (e.g., institutional impact), 3) specific mentee characteristics (e.g., age and gender), and 4) additional types of mentoring relationships (e.g., peer, multiple mentors). This research provides valuable insight to the IM model and IM theory more generally. This information can be applied to refine culturally appropriate mentorship practices, mentor selection and support, and evaluation of mentorship programs.
Open Access
Participant-reported effect of an Indigenous health continuing professional development initiative for specialists
(2021-02-18) Barnabe, Cheryl; Kherani, Raheem B; Appleton, Tom; Umaefulam, Valerie; Henderson, Rita; Crowshoe, Lynden
Abstract Background Health outcomes of Indigenous patients are impacted by culturally unsafe specialty care environments. The ‘Educating for Equity (E4E)’ program is a continuing professional development (CPD) intervention which incorporates skill-based teaching to improve Indigenous patient experiences and outcomes in healthcare interactions. Methods The E4E program was delivered to rheumatologists in two phases, each delivered as experiential learning workshops where participants engaged with and applied course content within an interactive format focusing on real-time feedback. The phase 1 workshop focused on skill development of E4E Framework concepts and principles. Phase 2 concentrated on building capacity for teaching of E4E content. Evaluation of the program’s effectiveness was through longitudinal responses to the Social Cultural Confidence in Care Survey (SCCCS), self-reported strategies employed to address social issues and improve therapeutic relationships, engagement with teaching others, and satisfaction with the program. Results Two cohorts of participants have participated in the program (n = 24 Phase 1, n = 10 Phase 2). For participants completing both phases of training, statistically significant improvements were observed in exploring social factors with patients, gaining knowledge and skills related to cultural aspects of care, improved communication and relationship building, and reflections on held stereotypes. Strategies to address social issues and build therapeutic relationships remained consistent throughout participation, while the training enhanced exploration and confidence to ask about cultural and traditional practices, and stronger communication strategies for exploring beliefs, expectations, social barriers, and residential school impacts on health. Participants reported feeling prepared to teach Indigenous health concepts to others and subsequently lead teaching with residents, fellows, and allied health professionals. Satisfaction with the delivery and content of the workshops was high, and participants valued interactions with peers in learning. Conclusions This CPD intervention had a beneficial impact on self-reported confidence and enhanced practice strategies to engage with Indigenous patients.
Open Access
Patient and Rheumatologist Perspectives on Tapering DMARDs in Rheumatoid Arthritis: A Qualitative Study
(British Society for Rheumatology, Oxford University Press [University Publisher, 2021-04-20) Hazlewood, Glen S; Loyola-Sanchez, Adalberto; Bykerk, Vivian; Hull, Pauline M; Marshall, Deborah; Pham, Tram; Barber, Claire E H; Barnabe, Cheryl; Sirois, Alexandra; Pope, Janet; Schieir, Orit; Richards, Dawn; Proulx, Laurie; Bartlett, Susan J
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 years) 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 healthcare 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.
Open Access
Patient factors associated with waiting time to pediatric rheumatologist consultation for patients with juvenile idiopathic arthritis
(2020-03-06) Barber, Claire E H; Barnabe, Cheryl; Benseler, Susanne; Chin, Ricky; Johnson, Nicole; Luca, Nadia; Miettunen, Paivi; Twilt, Marinka; Veeramreddy, Dwaraka; Shiff, Natalie J; Schmeling, Heinrike
Abstract Background Early diagnosis and treatment of Juvenile Idiopathic Arthritis (JIA) is essential to optimize outcomes. Wait times (WTs) to consultation with a pediatric rheumatologist consultation is a Canadian quality measure, with benchmarks set at 7 days for systemic JIA (sJIA) and 4 weeks for other JIA categories. In this study we assess WTs for JIA at a single academic center and describe factors associated with longer WTs. Methods This was a retrospective cohort study of 164 patients enrolled in a pharmacogenetic study in Alberta between 2002 and 2018. Limited chart reviews were conducted to evaluate dates of referral and first rheumatology visit to calculate WTs for receipt of pediatric rheumatology care. Cox proportional hazard models identified factors associated with WTs considering variables at the first pediatric rheumatology visit including: JIA category, age, sex, distance to the pediatric rheumatology clinic, number of active joints, pain and C-reactive protein. Results The median age at diagnosis was 8.0 years (interquartile range, IQR 3.5, 12.0) and 46% of patients had oligoarticular JIA. Only 18 patients (11%) were from rural locations. The median WT for all patients met the national benchmark (22 days, IQR, 9, 44) with no statistically significant difference between WTs among JIA categories (p = 0.055). Importantly, the majority of sJIA cases met the 7-day benchmark (67%) with a median WT of 1.5 days. Older age was associated with longer WT (HR 0.94, 95% CI 0.89, 0.98, p = 0.005). Conclusion Median benchmarks were met, however delays in older patients highlight the need for monitoring WTs.
Open Access
System-level performance measures of access to rheumatology care: a population-based retrospective study of trends over time and the impact of regional rheumatologist supply in Ontario, Canada, 2002–2019
(2022-12-27) Barber, Claire E.; Lacaille, Diane; Croxford, Ruth; Barnabe, Cheryl; Marshall, Deborah A.; Abrahamowicz, Michal; Xie, Hui; Avina-Zubieta, J. A.; Esdaile, John M.; Hazlewood, Glen; Faris, Peter; Katz, Steven; MacMullan, Paul; Mosher, Dianne; Widdifield, Jessica
Abstract Objective To determine whether there were improvements in rheumatology care for rheumatoid arthritis (RA) between 2002 and 2019 in Ontario, Canada, and to evaluate the impact of rheumatologist regional supply on access. Methods We conducted a population-based retrospective study of all individuals diagnosed with RA between January 1, 2002 and December 31, 2019. Performance measures evaluated were: (i) percentage of RA patients seen by a rheumatologist within one year of diagnosis; and (ii) percentage of individuals with RA aged 66 years and older (whose prescription drugs are publicly funded) dispensed a disease modifying anti-rheumatic drug (DMARD) within 30 days after initial rheumatologist visit. Logistic regression was used to assess whether performance improved over time and whether the improvements differed by rheumatology supply, dichotomized as < 1 rheumatologist per 75,000 adults versus ≥1 per 75,000. Results Among 112,494 incident RA patients, 84% saw a rheumatologist within one year: The percentage increased over time (adjusted odds ratio (OR) 2019 vs. 2002 = 1.43, p < 0.0001) and was consistently higher in regions with higher rheumatologist supply (OR = 1.73, 95% CI 1.67–1.80). Among seniors who were seen by a rheumatologist within 1 year of their diagnosis the likelihood of timely DMARD treatment was lower among individuals residing in regions with higher rheumatologist supply (OR = 0.90 95% CI 0.83–0.97). These trends persisted after adjusting for other covariates. Conclusion While access to rheumatologists and treatment improved over time, shortcomings remain, particularly for DMARD use. Patients residing in regions with higher rheumatology supply were more likely to access care but less likely to receive timely treatment.
Open Access
Testing population-based performance measures identifies gaps in juvenile idiopathic arthritis (JIA) care
(2019-08-14) Barber, Claire E; Lix, Lisa M; Lacaille, Diane; Marshall, Deborah A; Kroeker, Kristine; Benseler, Susanne; Twilt, Marinka; Schmeling, Heinrike; Barnabe, Cheryl; Hazlewood, Glen S; Bykerk, Vivian; Homik, Joanne; Thorne, J. C; Burt, Jennifer; Mosher, Dianne; Katz, Steven; Shiff, Natalie J
Abstract Background The study evaluates Performance Measures (PMs) for Juvenile Idiopathic Arthritis (JIA): The percentage of patients with new onset JIA with at least one visit to a pediatric rheumatologist in the first year of diagnosis (PM1); and the percentage of patients with JIA under rheumatology care seen in follow-up at least once per year (PM2). Methods Validated JIA case ascertainment algorithms were used to identify cases from provincial health administrative databases in Manitoba, Canada in patients < 16 years between 01/04/2005 and 31/03/2015. PM1: Using a 3-year washout period, the percentage of incident JIA patients with ≥1 visit to a pediatric rheumatologist in the first year was calculated. For each fiscal year, the proportion of patients expected to be seen in follow-up who had a visit were calculated (PM2). The proportion of patients with gaps in care of > 12 and > 14 months between consecutive visits were also calculated. Results One hundred ninety-four incident JIA cases were diagnosed between 01/04/2008 and 03/31/2015. The median age at diagnosis was 9.1 years and 71% were female. PM1: Across the years, 51–81% of JIA cases saw a pediatric rheumatologist within 1 year. PM2: Between 58 and 78% of patients were seen in yearly follow-up. Gaps > 12, and > 14, months were observed once during follow-up in 52, and 34%, of cases, and ≥ twice in 11, and 5%, respectively. Conclusions Suboptimal access to pediatric rheumatologist care was observed which could lead to diagnostic and treatment delays and lack of consistent follow-up, potentially negatively impacting patient outcomes.
Open Access
The Feasibility and Usability of a Novel Tool for Learning and Reviewing Walking Aid Skills: A Multi-Method Study
(2024-08-23) O'Brien, Maureen Megan; Manocha, Ranita; Barnabe, Cheryl; Best, Krista; Holroyd-Leduc, Jayna
Background: Walking aids are used by over 1 million Canadians to facilitate independent mobility and enhance balance. However, inadequate training on the use of walking aids may increase the risk of upper body pain and falling. To address this need, a novel interactive video-based mobile application to teach safe walking aid use was developed. Objectives: 1) To assess the feasibility of a trial with the novel application. 2) To explore the preliminary impact of the novel application on balance confidence, balance, mobility, and endurance. 3) To determine whether the novel application is user-friendly and useful for walking aid users. Methods: In a single-arm, pre-post feasibility study design, adult walking aid users completed the Activities-specific Balance Confidence Scale (ABC), the 2-Minute Walk Test (2MWT), Timed up and Go (TUG) test, and Berg Balance Scale (BBS) at baseline. Participants then used the novel application’s fitting and gait training modules pertaining to their walking aid. A follow-up visit was scheduled 2 weeks later to reinforce app instructions and repeat the ABC, 2MWT, TUG, and BBS. At this time participants also completed the System Usability Scale (SUS), and a semi-structured interview on their app experience. Results: Thirteen walking aid users (mean±SD age 55±15 years; duration of walking aid use 2.7±4.0 years; 7 males) participated. Trial feasibility metrics were attained on 3 out of the 6 indicators. Participants achieved statistically significant small to medium improvements in balance confidence and balance. However, participants did not experience significant improvements in mobility or endurance. The mean±SD SUS score was 88.3±10.5 corresponding to high usability of the novel application. Three major themes emerged from the interviews: perceived ease of use, perceived usefulness, and motivation for app use. Conclusion: Based on our criteria, a trial with the novel application may be feasible, with some modifications. Preliminary improvements in clinically relevant outcomes including balance confidence and balance were found. Walking aid users found the app to be an easy-to-use platform for learning and maintaining walking aid skills. These findings will help inform a randomized controlled trial to evaluate the effect of the application on clinical outcomes.
Open Access
The Impact of Study Methodology on Studying Genetic and Environmental Risk Factors for the Inflammatory Bowel Diseases
(2016) Kuenzig, Mary Ellen; Kaplan, Gil; Seow, Cynthia; Barnabe, Cheryl; Eksteen, Johannes
Inflammatory bowel disease (IBD), comprised of Crohn’s disease and ulcerative colitis, results from a complex interaction between genetic and environmental factors. NOD2 and cigarette smoking are two of the most commonly replicated genetic and environmental risk factors, respectively, for Crohn’s disease. Studies examining the interaction between NOD2 and smoking in patients with Crohn’s disease have reached heterogeneous conclusions. Study methodology may explain these differences. Chapters Three and Four evaluate NOD2-smoking interactions in Crohn’s disease with a focus on study methodology. Chapter Three is a systematic review and meta-analysis that found a negative interaction between NOD2 and smoking. However, this interaction is SNP-specific and influenced by the definition of smoking used (i.e., dichotomizing smoking status vs. separately analyzing current, former, and never smoking). Using a case-only study design (Chapter Four), the impact of age at diagnosis was explored as a potential mechanism for the negative interaction between NOD2 and smoking. Age at diagnosis exhibits opposing trends in the proportion of individuals that carry a NOD2 mutation and smoke, with NOD2 being significantly more common among young individuals while smoking is more common among those older at diagnosis. Combining individuals of all ages artificially results in a negative interaction between these two factors. Chapter Five assesses the association between smoking and the need for surgery in patients with Crohn’s disease or ulcerative colitis in a systematic review and meta-analysis only including studies that separately analyzed current, former, and never smokers. Included studies also incorporated disease duration in the analysis. In the final manuscript, a case-control study using administrative data from Alberta Health was used to examine the association between asthma and Crohn’s disease or ulcerative colitis. Age at diagnosis modified the association between ulcerative colitis and asthma and these two diseases were only associated for individuals under the age of 17 or over the age of 40. The association between asthma and Crohn’s disease was consistently observed across all ages. The conclusions of all four manuscripts emphasize that study methodology may influence study results; this includes how exposure (genetic or environmental) and how sub-phenotypes (i.e., early- or late-onset) of disease are analyzed.