Canadian Arthritis Patient Alliance

BackgroundArthritis is a group of chronic inflammatory conditions, including systemic lupus erythematosus and rheumatoid arthritis, that disproportionately impact females more than men, often during the childbearing years. Challenges with pregnancy and parenting continue to significantly impact patients and families living with arthritis, compounded by the historical lack of research that has hindered the ability to make informed family planning decisions.ObjectivesIn ongoing efforts to broadly translate our expanding research findings in this area, we held two public webinars on pregnancy and parenting in arthritis with the following goals: 1) to create forums for discussion among researchers, patients, and clinicians; 2) raise awareness on emerging issues requiring future research; and 3) provide evidence-based, practical advice for patients, caregivers and families.SummaryThe first webinar on Pregnancy and Arthritis united perspectives from patients, clinicians and researchers. We learned firsthand challenges of navigating pregnancy with arthritis from patients of various backgrounds, including those who highlighted longstanding healthcare disparities. A rheumatologist specializing in pregnancy and reproductive health shared insights, concluding with the positive outlook that perinatal research is underway on emerging antirheumatic therapies. The second webinar on Parenting and Arthritis discussed evidence-based resources and strategies to support parents, integrating insights from researchers and clinicians.ConclusionThese webinars illuminated the profound impacts of arthritis on patients and families and revealed knowledge gaps for future research.

To explore the experiences and perspectives of patients and rheumatologists on decision aid (DA)-led tapering of advanced therapy in rheumatoid arthritis (RA). Semistructured interviews were completed with patients and rheumatologists, embedded within a pilot study of DA-led tapering (ie, dose reduction) of biologic disease-modifying antirheumatic drugs (bDMARDs) and targeted synthetic DMARDs (tsDMARDs) in RA. All patients were in sustained (≥ 6 mos) remission and had chosen to reduce their therapy after a DA-led shared decision with their rheumatologist. The rheumatologists included those participating in the pilot (n = 4), and those who were not (n = 8). Reflexive thematic analysis of audiotaped and transcribed interviews identified themes in the group experiences. Patients (n = 10, 6 female) unanimously found the DA easy to understand and felt confident in shared decision making about treatment tapering and managing flares. Rheumatologists' (n = 12, 5 female) perspectives on tapering bDMARDs and tsDMARDs varied widely, from very supportive to completely opposed, and influenced their views on the DA. Rheumatologists expressed concerns about patient comprehension, destabilizing a stable situation, risks of flare, and extending appointment times. Despite their initial reservations about sending the DA to all eligible patients ahead of appointments, 3 of 4 participating rheumatologists adopted this approach during the pilot, which had the benefit of facilitating patient-led conversations. A DA-led strategy for tapering advanced therapy in RA was acceptable to patients and feasible in practice. Sending patients a DA ahead of their appointment facilitated patient-led conversations about tapering.

Sepsis is a global health threat with significant morbidity and mortality. Despite clinical practice guidelines and developed health systems, sepsis is often unrecognized or misdiagnosed, leading to preventable harm. In Canada, sepsis is responsible for 1 in 20 deaths and is a significant driver of health system costs. Despite being a signatory to the World Health Organization's Resolution WHA 70.7, adopted in 2017, Canada has not lived up to its commitment. Many existing sepsis policies were developed in response to a specific tragedy, and there is no national sepsis action plan. In this article, we describe the burden of sepsis, provide examples of existing, context-specific, reactionary sepsis policies, and urge a coordinated, proactive Canadian sepsis action plan to reduce the burden of sepsis.

To understand experiences related to rheumatoid arthritis (RA) care and propose service-level strategies to reduce and mitigate inequities for Black people living in Canada. Purposive and respondent driven sampling was used to recruit participants for qualitative interviews to explore population factors relevant to RA care and challenges and facilitators for access to health care services, medications, and enacting preferred treatment plans. Thematic analysis was conducted using the Braun and Clarke method with inductive and deductive coding and critical race theory guiding analysis. Six women and two men with RA, and two women health care professionals, expressed how their racial identity contributed to their understanding of RA, preferences for treatment, and outcome goals. Health care access was influenced by financial limitations and racism, by exclusion, and discrimination, and also by cultural norms in seeking health care and awareness about RA within the Black community. Participants experienced health system fragmentation and were not connected to ancillary supports. Treatment decision-making was influenced by the legacy of oppression and medical experimentation on Black people and the predominance of biomedical approaches emphasized by health care providers. Holistic and cultural approaches, provided in safe, trauma-informed care environments, with flexibility in service models, are desired. Partnerships between arthritis care services and Black community organizations are proposed to promote community awareness and knowledge about arthritis and provide support mechanisms for patients within their community. Our study highlights unique considerations based on race and ethnicity and provides suggestions for arthritis care to mitigate inequities for Black people living with arthritis.

The Skin Investigation Network of Canada (SkIN Canada) completed a national priority setting initiative to identify the top 10 knowledge uncertainties for BCC based on the James Lind Alliance principles. Overall, 91 patients, clinicians and researchers provided input in two survey rounds and one workshop. The top 10 list of research priorities will help the skin research community, funders and policymakers to address key knowledge uncertainties for the benefit of patients with BCC.

Abstract Background Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making model. We sought to explore families’ decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs.Methods We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8–18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis.Results A total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families’ values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied.Conclusions Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and shared decision making (SDM). Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.

There is an increasing recognition of the importance of patient engagement and involvement in health research, specifically within the field of rheumatology. In general, researchers in this specialty appreciate the value of patients as partners in research. In practice, however, the majority of researchers does not involve patients on their research teams. Many researchers find it difficult to match their needs for patient engagement and the potential contributions from individuals living with rheumatic disease. In this Viewpoint, we provide researchers and patients practical tips for matching ‘supply and demand,’ based on our own experiences as patient engagement consultants and trainers in rheumatology research. All authors started as a ‘naïve’ patient or caregiver, an identity that evolved through a process of ‘adversarial growth’: positive changes that are experienced as a result of the struggle with highly challenging life circumstances. Here, we introduce four stages of adversarial growth in the context of research. We submit that all types of patients have their own experiences, qualities and skills, and can add specific input to research. The recommendations for engagement are not strict directives. They are meant as starting points for discussion or interview. Regardless of individual qualities and knowledge, we believe that all patients engaged in research have a single goal in common: to contribute to research that ultimately will change the lives of many other patients.

To generate initial data on the frequency and effect of symptomatic adverse events (AEs) associated with rheumatoid arthritis (RA) drug therapy from the patient perspective. We conducted an exploratory online survey asking patients with RA to indicate whether they currently or had ever experienced the 80 different symptomatic AEs included in the Patient-Reported Outcomes of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Results were summarized to report their frequency, and regression models were used to estimate their associations with RA medication use and overall bother. The 560 patients who completed the survey and reported taking ≥ 1 RA medication (disease-modifying antirheumatic drugs [DMARDs], steroids, nonsteroidal antiinflammatory drugs [NSAIDs]), had a mean disease duration of 8 years, and were on a wide range of DMARDs. The number of symptomatic AEs experienced in the past 7 days was none (6%), 1-10 (28%), 11-20 (28%), and > 20 (38%). Overall, most participants reported that side effects bothered them somewhat (28%), quite a bit (24%), or very much (15%). In multivariable regression analyses, current prednisone and NSAID use were associated with the greatest number of current side effects (26 and 22, respectively). Many of the strongest associations between current symptomatic AEs and medication use aligned with known side effect profiles. In this exploratory online survey, patients with RA reported frequent symptomatic AEs with their medications that are bothersome. Further work is needed to develop and validate a measure for use in patients with rheumatic disease.

The Strategy for Patient Oriented Research (SPOR) Evidence Alliance is a research initiative in Canada whose mission is to promote the synthesis, dissemination, and integration of research results into health care and public health decision-making and clinical practice. The aim of this paper is to ( i) outline the governance and committee structure of the SPOR Evidence Alliance, ( ii) outline the procedures for patient and health system decision-maker engagement, and ( iii) present the capacity-building strategy for governance members. The governance structure includes the following six standing committees: the International Advisory Committee, Steering Committee, Executive Committee, Knowledge Translation Committee, Partnerships Committee, and Training and Capacity Development Committee. The guiding principles embrace inclusiveness, support, mutual respect, transparency, and co-building. There are currently 64 committee members across the six committees, 13 patient and public partners, 8 health system decision-makers, 7 research trainees, and 36 researchers. A multi-disciplinary and diverse group of people in Canada are represented from all regions and at various levels of training in knowledge generation, exchange, and translation. This collaborative model makes the SPOR Evidence Alliance strong and sustainable by leveraging the knowledge, lived experiences, expertise, skills, and networks among its 342 members and 12 principal investigators.