Investigating the Influence of Patient Eligibility Characteristics on the Number of Deferrable Rheumatologist Visits: Planning for a Patient-Initiated Follow-Up Strategy.

OBJECTIVE: Patient-initiated follow-up (PIFU) for rheumatoid arthritis (RA) is a model of care delivery wherein patients contact the clinic when needed instead of having regularly scheduled follow-up. Our objective was to investigate the influence of different patient eligibility characteristics on the number of potentially deferred visits to inform future implementation of a PIFU strategy. METHODS: We conducted a retrospective chart review of 7 rheumatologists' practices at 2 university-based clinics between March 1, 2021, and February 28, 2022. Data extracted included the type and frequency of visits, disease management, comorbidities, and care complexities. Stable disease was defined as remission or low disease activity with no medication changes at all visits. The influence of patient characteristics on the number of deferrable visits in patients with stable disease was explored in 4 criteria sets that were based on early disease duration, medication prescribed, presence of care complexity elements, and comorbidity burden. RESULTS: Records from 770 visits were reviewed from 365 patients with RA (71.5% female, 70% seropositive). Among all criteria sets, the proportion of visits that could be redirected varied between 2.5% and 20.9%. The highest proportion of deferrable visits was achieved when eligibility criteria included only stable disease activity and patients with RA on conventional synthetic disease-modifying antirheumatic drugs or no medications (n = 161, 20.9%). CONCLUSION: PIFU may result in a more efficient use of specialist healthcare resources. However, the applicability of such models of care and the number of deferred visits is highly dependent on patient characteristics used to establish eligibility criteria for that model. These findings should be considered when planning implementation trials.

The voice of patients in system redesign: A case study of redesigning a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis.

BACKGROUND: The published literature demands examples of health-care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. METHODS: This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health-care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)-centralized intake. The phenomenon of patient engagement using "patient and community engagement researchers" (PaCERs) in research and the process of redesigning centralized intake were selected as the case. In-depth evaluation of the case was undertaken through the triangulation of findings from the document review and participants' reflection on the case. RESULTS: In this case, patients and PaCERs participated in multiple activities including an initial meeting of key stakeholders to develop the project vision; a patient-to-patient PaCERs study to gather perspectives of patients with RA on the challenges they face in accessing and navigating the health-care system, and what they see as key elements of an effective system that would be responsive to their needs; the development of an evaluation framework for future centralized intake; and the choice of candidate centralized intake strategies to be evaluated. CONCLUSIONS: The described feasible multistep approach to active patient engagement in health-care system redesign contributes to an understanding of the application of this complex phenomenon in practice. Therefore, the manuscript serves as one more step towards a patient-centred health-care system that is redesigned with active patient engagement.

Healthcare resource utilization and costs in stable patients with rheumatoid arthritis: Comparing nurse-led and rheumatologist-led models of care delivery.

OBJECTIVES: Having previously shown similar clinical outcomes, this study compared the healthcare resource utilization and direct costs in stable patients with RA followed in the nurse-led care (NLC) and rheumatologist-led care (RLC) models. METHODS: Previously collected clinical data were linked to data on practitioner claims, ambulatory care, and hospital discharges. Assessed resources included physician visits; emergency department (ED) visits; hospital admissions, and disease-modifying anti-rheumatic drugs (DMARDs). The mean per-patient resource utilization and cost (2020 Canadian dollars) over 1 year were compared between the groups using Wilcoxon rank-sum test. The mean per-patient cost of health services and total cost were also estimated using Generalized Linear Models (GLMs) accounting for the baseline differences between the groups. RESULTS: Overall, 244 patients were included. No differences in the number of visits to the ED or to general practice and internal medicine physicians and orthopedic surgeons were found. The NLC group had fewer hospitalizations than the RLC group (p-value=0.03). The mean cost of health services was not statistically different in NLC and RLC groups ($2275 vs. $3772, p-value=0.30). The RLC group included more patients on biologic DMARDs, contributing to a higher mean total cost than the NLC group ($9191 vs. $3056, p-value<0.01). The mean cost estimates with GLMs were consistent with the observed costs. CONCLUSIONS: A nurse-led model of care delivery for stable patients with RA was not associated with increases in healthcare resource utilization or cost as compared to RLC. NLC is one approach to meeting patient needs and better managing scarce healthcare resources.

Development of an Implementation Strategy for Patient Decision Aids in Rheumatoid Arthritis Through Application of the Behavior Change Wheel.

OBJECTIVE: Decision aids are being developed to support guideline-based rheumatology care in Canada. The study objective was to identify barriers to decision aid use in rheumatoid arthritis (RA) within a behavior change model to inform an implementation strategy. METHODS: Perspectives from Canadian health care providers (HCPs) and patients living with RA were obtained on an early RA decision aid and on perceived facilitators and barriers to decision aid implementation. Data were collected through semistructured interviews, transcribed, and then analyzed by inductive thematic analysis. The lessons learned were then mapped to the behavior change wheel COM-B system (C = capability, O = opportunity, and M = motivation interact to influence B = behavior) to inform key elements of a national implementation strategy. RESULTS: Fifteen HCPs and fifteen patients participated. The analysis resulted in five lessons learned: 1) paternalistic decision-making is a dominant practice in early RA, 2) patients need emotional support and access to educational tools to facilitate participation in shared decision-making (SDM), 3) there are many logistical barriers to decision aid implementation in current care models, 4) flexibility is necessary for successful implementation, and 5) HCPs have limited interest in further training opportunities about decision aids. Implementation recommendations included the following: 1) making the decision aids directly available to patients (O) and providing SDM education (C/M), 2) creating an SDM rheumatology curriculum (C/O/M), 3) using "decision coaches" or patient partners as peer support (C/O/M), 4) linking decision aids to "living" rheumatology guidelines (M), and 5) designing trials of patient decision aid/SDM interventions to evaluate patient-important outcomes (O/M). CONCLUSION: A multifaceted strategy is suggested to improve uptake of decision aids.

Nurse-Led Care for Stable Patients with Rheumatoid Arthritis: Quality of Care in Routine Practice Compared to the Traditional Rheumatologist-Led Model.

INTRODUCTION: This pragmatic non-inferiority study assessed quality of care within a nurse-led care (NLC) model for stable patients with rheumatoid arthritis (RA) compared to the traditional rheumatologist-led care (RLC) model. METHODS: Data were collected through a chart review. Baseline demographic and clinical characteristics were compared using Chi-square test and t test. The primary outcome measure was the percentage of patients being in remission or low disease activity (R/LDA) with the Disease Activity Score (DAS-28) ≤ 3.2 at 1-year follow-up. Process measures included the percentages of patients with chart documentation of (1) comorbidity screening; (2) education on flare management, and (3) vaccinations screening. Outcomes were summarized using descriptive statistics. RESULTS: Each group included 124 patients. At baseline, demographic and clinical characteristics were comparable between the groups for most variables. Exceptions were the median (Q1, Q3) Health Assessment Questionnaire Disability Index scores [0 (0, 0.25) in NLC and 0.38 (0, 0.88) in RLC, p = 0.01], and treatment patterns with 3% of NLC and 38% of RLC patients receiving a biologic agent, p = 0.01. NLC was non-inferior to RLC with 97% of NLC and 92% of RLC patients being in R/LDA at 1-year follow-up. Patients in the NLC group had better documentation across all process measures. CONCLUSIONS: This study provided real-world evidence that the evaluated NLC model providing protocolized follow-up care for stable patients with RA is effective to address patients' needs for ongoing disease monitoring, chronic disease management, education, and support.

Development of a Canadian Core Clinical Dataset to Support High-quality Care for Canadian Patients with Rheumatoid Arthritis.

OBJECTIVE: To develop a Canadian Rheumatoid Arthritis Core Clinical Dataset (CAN-RACCD) to standardize documentation encouraging high-quality care. METHODS: A set of candidate elements was drafted through meetings with 27 rheumatologists, researchers, and patients, and supplemented with focused literature reviews. A 3-round online-modified Delphi consensus process was held with rheumatologists (n = 26), allied health professionals (n = 7), and patients (n = 4); for the remainder there was no demographic information. Participants rated both the importance and feasibility of documenting candidate elements on a Likert scale of 1-9, contributed to an online moderated discussion, and re-rated the elements for inclusion in the CAN-RACCD. Elements were included in the final set if importance and feasibility ratings had a median score of ≥ 6.5 and there was no disagreement among participants. RESULTS: Fifty-five individual elements in 10 subgroups were proposed to the Delphi participants: measures of RA disease activity; dates to calculate waiting times, disease duration, and disease-modifying antirheumatic drug start; comorbidities; smoking status; patient-reported pain and fatigue; physical function; laboratory and radiographic investigations; medications; clinical characteristics; and vaccines. All groups were included in the final set, with the exception of vaccination status. Additionally, 3 individual elements from the smoking subgroup were eliminated with a recommendation to record smoking status as never/ever/current, and 2 elements relating to coping and effect of fatigue were eliminated due to low feasibility and importance ratings. CONCLUSION: The CAN-RACCD stands as a national recommendation on which data elements should be routinely collected in clinical practice to monitor and support high-quality RA care.

Improving Appropriate Access to Care With Central Referral and Triage in Rheumatology.

OBJECTIVE: To evaluate the short-term and long-term impact of a centralized system for the intake and triage of rheumatology referrals on access to care and referral quality. METHODS: An innovative central referral process, the Central Referral and Triage in Rheumatology (CReATe Rheum) program, was implemented in 2006, serving a referral base of 2 million people. Referrals are received in a central office, triaged by trained nurses, and assigned to the next available appointment on a prioritized basis. To evaluate the short-term impact, we compared wait times, duplicate referrals, and no-shows from a pre-implementation practice audit to a 2-year post-implementation evaluation (January 2007 to December 2008). Rheumatologists also assessed the quality and completeness of the referral information and accuracy of the urgency category assigned during triage. We evaluated the long-term impact by tracking referral volume, wait times, and rheumatologist manpower each year until December, 2013. RESULTS: During the first 2 years, wait-time variability between rheumatologists decreased, and wait times were reduced for moderate and urgent referrals. CReATe Rheum improved the quality of referral information and eliminated duplicate referrals. The urgency of the referral was assigned correctly in 90% of referrals. Over the long term, CReATe Rheum maintained short wait times for more urgent patients despite a growing number of referrals and a stable number of rheumatologists. CONCLUSION: A centralized system for the intake and triage of rheumatology referrals improved referral quality, reduced system inefficiencies, and effectively managed wait times on a prioritized basis for a large referral population.

Development of System-level Performance Measures for Evaluation of Models of Care for Inflammatory Arthritis in Canada.

OBJECTIVE: To develop system-level performance measures for evaluating the care of patients with inflammatory arthritis (IA), including rheumatoid arthritis (RA), psoriatic arthritis, ankylosing spondylitis, and juvenile idiopathic arthritis. METHODS: This study involved several methodological phases. Over multiple rounds, various participants were asked to help define a set of candidate measurement themes. A systematic search was conducted of existing guidelines and measures. A set of 6 performance measures was defined and presented to 50 people, including patients with IA, rheumatologists, allied health professionals, and researchers using a 3-round, online, modified Delphi process. Participants rated the validity, feasibility, relevance, and likelihood of use of the measures. Measures with median ratings ≥ 7 for validity and relevance were included in the final set. RESULTS: Six performance measures were developed evaluating the following aspects of care, with each measure being applied separately for each type of IA except where specified: waiting times for rheumatology consultation for patients with new onset IA, percentage of patients with IA seen by a rheumatologist, percentage of patients with IA seen in yearly followup by a rheumatologist, percentage of patients with RA treated with a disease-modifying antirheumatic drug (DMARD), time to DMARD therapy in RA, and number of rheumatologists per capita. CONCLUSION: The first set of system-level performance measures for IA care in Canada has been developed with broad input. The measures focus on timely access to care and initiation of appropriate treatment for patients with IA, and are likely to be of interest to other arthritis care systems internationally.

Transitioning to employment with a rheumatic disease: the role of independence, overprotection, and social support.

OBJECTIVE: To examine perceived independence, overprotection, and support, and their association with the employment participation of young adults with rheumatic disease. METHODS: One hundred and forty-three young adults, ages 18 to 30 years, with systemic lupus erythematosus (54.5%) and juvenile arthritis (45.5%) completed a 30-min online questionnaire of their work and education experiences. Information collected was demographic, health (e.g., pain, fatigue, disease activity), work context (e.g., career satisfaction, helpfulness of job accommodation/benefits, and workplace activity limitations), and psychosocial (e.g., independence, social support, and overprotection). Log-Poisson regression analysis examined factors associated with employment status. RESULTS: Over half of respondents were employed (59%) and 26% were enrolled in school. Respondents reported moderate to high perceptions of independence and social support. However, 27% reported that "quite a bit" to "a great deal" of overprotection characterized their relationships with those closest to them. At the bivariate level, employed participants and those indicating greater perceived independence reported greater social support and less overprotection. Multivariable analysis revealed that being employed was associated with older age, more job accommodations/benefits perceived as being helpful, and greater perceived independence. CONCLUSION: This is one of the first studies examining the employment of young adults with rheumatic diseases. Findings highlight the importance of psychosocial perceptions such as independence and overprotection, in addition to support related to working. Additional research is needed to better understand the role of those close to young adults with rheumatic diseases in supporting independence and encouraging employment.

Clinical and serological features of patients referred through a rheumatology triage system because of positive antinuclear antibodies.

BACKGROUND: The referral of patients with positive anti-nuclear antibody (ANA) tests has been criticized as an inappropriate use of medical resources. The utility of a positive ANA test in a central triage (CT) system was studied by determining the autoantibody profiles and clinical diagnoses of patients referred to rheumatologists through a CT system because of a positive ANA test. METHODS: Patients that met three criteria were included: (1) referred to Rheumatology CT over a three year interval; (2) reason for referral was a "positive ANA"; (3) were evaluated by a certified rheumatologist. The CT clinical database was used to obtain demographic and clinical information and a serological database was used to retrieve specific ANA and/or extractable nuclear antigen (ENA) test results. Clinical information was extracted from the consulting rheumatologist's report. RESULTS: 15,357 patients were referred through the CT system; 643 (4.1%) of these because of a positive ANA and of these 263 (40.9%) were evaluated by a certified rheumatologist. In 63/263 (24%) of ANA positive patients, the specialist provided a diagnosis of an ANA associated rheumatic disease (AARD) while 69 (26.2%) had no evidence of any disease; 102 (38.8%) had other rheumatologic diagnoses and 29 (11%) had conditions that did not meet AARD classification criteria. Of ANA positive archived sera, 15.1% were anti-DFS70 positive and 91.2% of these did not have an AARD. CONCLUSIONS: This is the first study to evaluate the serological and clinical features of patients referred through a CT system because of a positive ANA. The spectrum of autoantibody specificities was wide with anti-Ro52/TRIM21 being the most common autoantibody detected. Approximately 15% of referrals had only antibodies to DFS70, the vast majority of which did not have clinical evidence for an AARD. These findings provide insight into the utility of autoantibody testing in a CT system.

Canadian Rheumatology Association recommendations for the pharmacological management of rheumatoid arthritis with traditional and biologic disease-modifying antirheumatic drugs: part II safety.

OBJECTIVE: The Canadian Rheumatology Association (CRA) has developed recommendations for the pharmacological management of rheumatoid arthritis (RA) with traditional and biologic disease-modifying antirheumatic drugs (DMARD) in 2 parts. Part II, focusing on specific safety aspects of treatment with traditional and biologic DMARD in patients with RA, is reported here. METHODS: Key questions were identified a priori based on results of a national needs-assessment survey. A systematic review of all clinical practice guidelines and consensus statements regarding treatment with traditional and biologic DMARD in patients with RA published between January 2000 and June 2010 was performed in Medline, Embase, and CINAHL databases, and was supplemented with a "grey literature" search including relevant public health guidelines. Systematic reviews of postmarketing surveillance and RA registry studies were performed to update included guideline literature reviews as appropriate. Guideline quality was independently assessed by 2 reviewers. Guideline characteristics, recommendations, and supporting evidence from observational studies and randomized trials were synthesized into evidence tables. The working group voted on recommendations using a modified Delphi technique. RESULTS: Thirteen recommendations addressing perioperative care, screening for latent tuberculosis infection prior to the initiation of biologic DMARD, optimal vaccination practices, and treatment of RA patients with active or a history of malignancy were developed for rheumatologists, other primary prescribers of RA drug therapies, and RA patients. CONCLUSION: These recommendations were developed based on a synthesis of international RA and public health guidelines, supporting evidence, and expert consensus in the context of the Canadian health system. They are intended to help promote best practices and improve healthcare delivery for persons with RA.

Time to disease-modifying antirheumatic drug treatment in rheumatoid arthritis and its predictors: a national, multicenter, retrospective cohort.

OBJECTIVE: To determine the proportion of patients with rheumatoid arthritis (RA) under rheumatologic care treated with disease-modifying antirheumatic drugs (DMARD) within 6 months from symptom onset and the components of time to treatment and its predictors. METHODS: A historical inception cohort of 339 patients with RA randomly selected from 18 rheumatology practices was audited. The proportion that initiated DMARD treatment within 6 months from symptom onset was estimated using Kaplan-Meier analysis. Time to each component of the care pathway was estimated. Multivariable modeling was used to determine predictors of early treatment using 12 preselected variables available in the clinical charts. Bootstrapping was used to validate the model. RESULTS: Within 6 months from symptom onset, 41% (95% CI 36%-46%) of patients were treated with DMARD. The median time to treatment was 8.4 (interquartile range 3.8-24) months. Events preceding rheumatology referral accounted for 78.1% of the time to treatment. The most prominent predictor of increased time to treatment was a concomitant musculoskeletal condition, such as osteoarthritis or fibromyalgia. The significance of other variables was less consistent across the models investigated. Included variables accounted for 0.69 ± 0.03 of the variability in the model. CONCLUSION: Fewer than 50% of patients with RA are treated with DMARD within 6 months from symptom onset. Time to referral to rheumatology represents the greatest component delay to treatment. Concomitant musculoskeletal condition was the most prominent predictor of delayed initiation of DMARD. Implications of these and other findings warrant further investigation.

Early management of newly diagnosed rheumatoid arthritis by Canadian rheumatologists: a national, multicenter, retrospective cohort.

OBJECTIVE: To describe early rheumatologic management for newly diagnosed rheumatoid arthritis (RA) in Canada. METHODS: A retrospective cohort of 339 randomly selected patients with RA diagnosed from 2001-2003 from 18 rheumatology practices was audited between 2005-2007. RESULTS: The most frequent initial disease-modifying antirheumatic drugs (DMARD) included hydroxychloroquine (55.5%) and methotrexate (40.1%). Initial therapy with multiple DMARD (15.6%) or single DMARD and corticosteroid combinations (30.7%) was infrequent. Formal assessment measures were noted infrequently, including the Health Assessment Questionnaire (34.6%) and Disease Activity Score for 28 joints (8.9%). CONCLUSION: Initial pharmacotherapy is consistent with guidelines from the period. The infrequent reporting of multiple DMARD combinations and formal assessment measures has implications for current clinical management and warrants contemporary reassessment.

Canadian recommendations for use of methotrexate in patients with rheumatoid arthritis.

OBJECTIVE: To develop recommendations for the use of methotrexate (MTX) in patients with rheumatoid arthritis. METHODS: Canadian rheumatologists who participated in the international 3e Initiative in Rheumatology (evidence, expertise, exchange) in 2007-2008 formulated 5 unique Canadian questions. A bibliographic team systematically reviewed the relevant literature on these 5 topics. An expert committee consisting of 26 rheumatologists from across Canada was convened, and a set of recommendations was proposed based on the results of systematic reviews combined with expert opinions using a nominal group consensus process. RESULTS: The 5 questions addressed drug interactions, predictors of response, strategies to reduce non-serious side effects, variables to assess clinical response, and incorporating patient preference into decision-making. The systematic review retrieved 93 pertinent articles; this evidence was presented to the expert committee during the interactive workshop. After extensive discussion and voting, a total of 9 recommendations were formulated: 2 on drug interactions, 1 on predictors of response, 2 on strategies to reduce non-serious side effects, 3 on variables to assess clinical response, and 1 on incorporating patient preferences into decision-making. The level of evidence and the strength of recommendations are reported. Agreement among panelists ranged from 85% to 100%. CONCLUSION: Nine recommendations pertaining to the use of MTX in daily practice were developed using an evidence-based approach followed by expert/physician consensus with high level of agreement.

Rheumatoid arthritis association with the FCRL3 -169C polymorphism is restricted to PTPN22 1858T-homozygous individuals in a Canadian population.

OBJECTIVE: Variants in genes encoding the Fc receptor-like 3 (FcRL-3) and the class II major histocompatibility complex (MHC) transactivator proteins have been associated with an increased risk of rheumatoid arthritis (RA) in Japanese and Nordic populations, respectively. The aim of this study was to investigate these associations in a Canadian Caucasian cohort of RA cases and healthy controls. METHODS: A total of 1,187 RA patients and 462 healthy controls were genotyped for FCRL3 and MHC2TA gene variants associated with RA. Epistasis between the FCRL3 -169C and the PTPN22 1858T variants was also examined. RESULTS: An association was detected between RA and both the FCRL3 -169C allele (OR 1.19, P = 0.023) and the homozygous genotype (OR 1.41, P = 0.027), but association of the MHC2TA promoter region variant (-168G) with RA was not replicated. Stratification of the RA cohort by PTPN22 genotypes revealed the FCRL3 risk variant and RA association was stronger in the patient subgroup lacking PTPN22 1858T variants (P = 0.004) and was not detectable in the subgroup with PTPN22 1858T variants (P = 0.52). The PTPN22 association with RA was greater in the absence than in the presence of the FCRL3 -169C allele (P = 0.0008 versus P = 0.001). The PTPN22 1858T variant also increased the risk of autoimmune thyroid disease (AITD) in the RA patients, whereas the FCRL3 risk variant was protective against AITD. CONCLUSION: Our findings support an association of RA with an FCRL3 functional polymorphism and reveal that this association is stronger in the absence of PTPN22 risk genotypes. These findings support a genetic heterogeneity across RA populations, suggesting that both the FCRL3 and PTPN22 genes play roles in RA susceptibility, but in different individuals.

The clinical assessment of patients with psoriatic arthritis: results of a reliability study of the spondyloarthritis research consortium of Canada.

OBJECTIVES: To evaluate whether rheumatologists experienced in psoriatic arthritis (PsA) assess peripheral and axial involvement in the same way and to consider core clinical measurements that should be included in clinical trials in PsA. METHODS: Ten patients with PsA, representing a broad range of joint inflammation, joint damage, and spinal involvement, were selected for the study. Each patient was examined by each of 10 rheumatologists, members of the Spondyloarthritis Research Consortium of Canada, according to a Latin Square design. Assessments included scoring actively inflamed joints and damaged joints, dactylitis, enthesitis, and spinal measurements. Variance components analyses were conducted for continuous measurements based on models with observer, patient, and order effects. Estimates of intraclass correlation coefficients and associated 95% confidence intervals were obtained. RESULTS: There was substantial reliability in the assessment of the number of actively inflamed joints and excellent agreement in the number of damaged joints. Only moderate agreement was found for the number of digits with dactylitis. There was excellent agreement among observers in the intermalleolar distance measurements, but there was not as good agreement in the other measurements of spinal mobility. There was good agreement among the observers in detecting plantar fasciitis, however, the other entheses did not fare as well. CONCLUSION: In this first multicenter study of the assessment of clinical evaluation of patients with PsA we found that the assessment of peripheral joint disease is reliable although training should be performed prior to initiation of drug trials or comparative studies in this disease. The assessment of back measurements in PsA and other spondyloarthritis requires further study.