Arthritis liaison: a First Nations community-based patient care facilitator. / Agente de liaison avec les personnes atteintes d'arthrite : un rôle important dans la prestation de soins à des patients des collectivités des Premières Nations.

INTRODUCTION: Arthritis is a leading cause of disability in First Nations communities and is often accompanied by other chronic diseases. Existing care models prioritize accessibility to specialty care for treatment, whereas patient-centred approaches support broader health goals. METHODS: A patient care facilitator model of care, termed "arthritis liaison," was developed with the community to support culturally relevant patient-centred care plans. Following a one-year-long intervention, we report on the feasibility and acceptability of this care model from the perspectives of patients and health care providers. RESULTS: The arthritis liaison served as a bridge between the clinicians and patients, and fostered continuity, helping patients receive coordinated care within the community.

Characterization of indigenous community engagement in arthritis studies conducted in Canada, United States of America, Australia and New Zealand.

BACKGROUND: Research adhering to community engagement processes leads to improved outcomes. The level of Indigenous communities' engagement in rheumatology research is unknown. OBJECTIVE: To characterize the frequency and level of community engagement reporting in arthritis studies conducted in Australia (AUS), Canada (CAN), New Zealand (NZ) and the United States of America (USA). METHODS: Studies identified through systematic reviews on topics of arthritis epidemiology, disease phenotypes and outcomes, health service utilization and mortality in Indigenous populations of AUS, CAN, NZ and USA, were evaluated for their descriptions of community engagement. The level of community engagement during inception, data collection and results interpretation/dissemination stages of research was evaluated using a custom-made instrument, which ranked studies along the community engagement spectrum (i.e. inform-consult-involve-collaborate-empower). Meaningful community engagement was defined as involving, collaborating or empowering communities. Descriptive analyses for community engagement were performed and secondary non-parametric inferential analyses were conducted to evaluate the possible associations between year of publication, origin of the research idea, publication type and region of study; and meaningful community engagement. RESULTS: Only 34% (n = 69) of the 205 studies identified reported community engagement at ≥ 1 stage of research. Nearly all studies that engaged communities (99% (n = 68)) did so during data collection, while only 10% (n = 7) did so at the inception of research and 16% (n = 11) described community engagement at the results' interpretation/dissemination stage. Most studies provided community engagement descriptions that were assessed to be at the lower end of the spectrum. At the inception of research stage, 3 studies reported consulting communities, while 42 studies reported community consultation at data collection stage and 4 studies reported informing or consulting communities at the interpretation/dissemination of results stage. Only 4 studies described meaningful community engagement through all stages of the research. Inferential statistics identified that studies with research ideas that originated from the Indigenous communities involved were significantly more associated with achieving meaningful community engagement. CONCLUSIONS: The reporting of Indigenous community engagement in published arthritis studies is limited in frequency and is most frequently described at the lower end of the community engagement spectrum. Processes that support meaningful community engagement are to be promoted.

Patient-reported Outcomes, Resource Use, and Social Participation of Patients with Rheumatoid Arthritis Treated with Biologics in Alberta: Experience of Indigenous and Non-indigenous Patients.

OBJECTIVE: To characterize patient-reported outcomes, resource use, and social participation during the course of biologic therapy for indigenous and non-indigenous patients with rheumatoid arthritis (RA). METHODS: Patients initiating biologic therapy (2004 to 2012) were characterized longitudinally for patient-reported outcomes including physical function measured by the Health Assessment Questionnaire, EQ-5D, well-being [Medical Outcomes Study Short Form-36 (SF-36)], and visual analog scales for pain, fatigue, sleep, stiffness, and patient's global assessment. Resource use, participation in activities of daily living, and effect of RA on work productivity were also evaluated for change during therapy. RESULTS: Indigenous patients (n = 90) presented with significantly worse scores for global evaluation, pain, sleep, quality of life, well-being, and physical function compared to non-indigenous patients (n = 1400). All patient-reported outcomes improved significantly during treatment for patients in both groups, but pain, sleep, and SF-36 physical health score changes occurred at slower rates for indigenous patients [difference in slopes 0.09 (p = 0.029), 0.08 (p = 0.043), and -0.35 (p = 0.03), respectively]. Performance of daily activities was affected for 50% of indigenous compared to 37% of non-indigenous patients, with more use of community services and assistance from others. Employed indigenous patients reported twice the number of days being unable to work owing to RA compared to employed non-indigenous patients. Of the unemployed indigenous patients, 82% indicated they had stopped working because of arthritis, versus 48% of non-indigenous patients (p < 0.0001). CONCLUSIONS: Indigenous patients have greater consequences of RA regarding experienced symptoms, health-related quality of life, disruption of performance of activities of daily living, and reduced employment participation.

Effectiveness, Complications, and Costs of Rheumatoid Arthritis Treatment with Biologics in Alberta: Experience of Indigenous and Non-indigenous Patients.

OBJECTIVE: To examine clinical effectiveness, treatment complications, and healthcare costs for indigenous and non-indigenous Albertans with rheumatoid arthritis (RA) participating in the Alberta Biologics Pharmacosurveillance program. METHODS: Patients initiating biologic therapy in Alberta (2004-2012) were characterized for disease severity and treatment response. Provincial hospitalization separations, physician claims, outpatient department data, and emergency department data were used to estimate treatment complication event rates and healthcare costs. RESULTS: Indigenous patients (n = 90) presented with higher disease activity [mean 28-joint count Disease Activity Score (DAS28) 6.11] than non-indigenous patients (n = 1400, mean DAS28 5.19, p < 0.0001). Improvements in DAS28, function, swollen joint count, CRP, and patient and physician global evaluation scores were comparable to non-indigenous patients, but indigenous patients did not have a significant improvement in erythrocyte sedimentation rate (-0.31 per month, 95% CI -0.79 to 0.16, p = 0.199). At the end of study followup, 13% (12/90) of indigenous and 33% (455/1400) of non-indigenous patients were in DAS28 remission (p < 0.001). Indigenous patients had a 40% increased risk of all-cause hospitalization [adjusted incidence rate ratio (IRR) 1.4, 95% CI 1.1-1.8, p = 0.01] and a 4-fold increase in serious infection rate (adjusted IRR 4.0, 95% CI 2.3-7.0, p < 0.001). Non-indigenous patients incurred higher costs for RA-related hospitalizations (difference $896, 95% CI 520-1273, p < 0.001), and outpatient department visits (difference $128, 95% CI 2-255, p = 0.047). CONCLUSION: We identified disparities in treatment outcomes, safety profiles, and patient-experienced effects of RA for the indigenous population in Alberta. These disparities are critical to address to facilitate and achieve desired RA outcomes from individual and population perspectives.