Disability justice and collective access to labour and delivery care: a qualitative study.

Background: People with disabilities experience perinatal health disparities. This qualitative study examines disabled people's experiences of labour and delivery care from a disability justice lens.

Methods: Semi-structured interviews were conducted between July 2019 and February 2020 with 31 women and transgender people aged 18-45 years with physical, sensory, and/or intellectual/developmental disabilities, who were living in in Ontario, Canada and had given birth in the previous five years.

How Safe Are COVID-19 Vaccines in Individuals with Immune-Mediated Inflammatory Diseases? The SUCCEED Study.

We were tasked by Canada's COVID-19 Immunity Task Force to describe severe adverse events (SAEs) associated with emergency department (ED) visits and/or hospitalizations in individuals with immune-mediated inflammatory diseases (IMIDs). At eight Canadian centres, data were collected from adults with rheumatoid arthritis (RA), axial spondyloarthritis (AxS), systemic lupus (SLE), psoriatic arthritis (PsA), and inflammatory bowel disease (IBD). We administered questionnaires, analyzing SAEs experienced within 31 days following SARS-CoV-2 vaccination.

Decision Aid-Led Tapering of Biologic and Targeted Synthetic Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis: A Qualitative Study.

Objective: To explore the experiences and perspectives of patients and rheumatologists on decision aid (DA)-led tapering of advanced therapy in rheumatoid arthritis (RA).

Methods: 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.

Reducing the burden of preventable deaths from sepsis in Canada: A need for a national sepsis action plan.

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.

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.

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.

Reflections on patient engagement by patient partners: how it can go wrong.

As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to "meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation" with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term 'patient engagement gone wrong.

Prenatal Care Experiences of Childbearing People With Disabilities in Ontario, Canada.

Objective: To explore the care experiences of childbearing people with physical, sensory, and/or intellectual/developmental disabilities during pregnancy.

Design: Descriptive qualitative.

Setting: Ontario, Canada, where physician and midwifery care during pregnancy are provided at no direct cost to residents.

Unmet needs, limited access: A qualitative study of postpartum health care experiences of people with disabilities.

Aim: To understand the postpartum care received by birthing people with disabilities and their newborns, from their own perspectives.

Design: A qualitative study with semi-structured interviews.

Methods: Between July 2019 and February 2020, in-person and virtual interviews were conducted with 31 people with physical, sensory, and intellectual/developmental disabilities in Ontario, Canada, about the formal inpatient and outpatient services and supports they used in the first few months after they gave birth.

Preferences for COVID-19 Vaccination in People With Chronic Immune-Mediated Inflammatory Diseases.

Objective: To understand how people with chronic immune-mediated inflammatory diseases (IMIDs) trade off the benefits and risks of coronavirus disease 2019 (COVID-19) vaccine options.

Methods: We conducted an online discrete-choice experiment in people with IMIDs to quantify the relative importance (RI) of attributes relevant to COVID-19 vaccination. Participants were recruited between May and August 2021 through patient groups and clinics in Canada, and completed 10 choices where they selected 1 of 2 hypothetical vaccine options or no vaccine.

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.

Bringing the patient voice into the operating room: engaging patients in surgical safety research with the Operating Room Black Box.

Background: Surgery is one of the most common patient experiences in the health care system. Yet, efforts to engage patients in surgical safety research have not matched those of other health care fields. This is a critical issue given the nature of surgery inhibits patients' abilities to advocate for themselves as they are typically under anesthetic when the procedure is performed.

How Does Job Insecurity and Workplace Activity Limitations Relate to Rheumatic Disease Symptom Trajectories in Young Adulthood? A Longitudinal Study.

Objective: Workplace and labor market conditions are associated with the health of the working population. A longitudinal study was conducted among young adults with rheumatic disease to examine workplace activity limitations and job insecurity and their relationship with disease symptom trajectories.

Methods: Three online surveys were administered to young adults with rheumatic disease over 27 months.

Barriers to and facilitators of effective communication in perinatal care: a qualitative study of the experiences of birthing people with sensory, intellectual, and/or developmental disabilities.

Background: Effective provider-patient communication is a key element of quality health care, including perinatal care. What constitutes "effective communication" in perinatal care may vary according to the population seeking care, such as women with intellectual and developmental disabilities (IDD) and sensory disabilities. Research broadly indicates that communication issues are among the barriers to perinatal care experienced by women with disabilities.

Frequency of Symptomatic Adverse Events in Rheumatoid Arthritis: An Exploratory Online Survey.

Objective: 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.

Methods: 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.

Identifying potential barriers and solutions to patient partner compensation (payment) in research.

Research that engages patients on the research team is often supported by grant funding from different organizations and, in some cases, principal investigators (who control the grant funding) provide patient partners with compensation (or payment) for their contributions. However, we have noted a gap in resources that identify and address barriers to compensating patient partners (no matter the size, degree or length of their engagement). In this paper, we present thoughts and experiences related to barriers to compensating patient partners with the goal of helping individuals identify and find solutions to these obstacles.

"The medications are the decision-makers…" Making reproductive and medication use decisions among female patients with rheumatoid arthritis: a constructivist grounded theory.

Objective: To examine how female patients with RA form decisions about having children, pregnancy, and medication use.

Methods: We employed a constructivist grounded theory design and recruited female participants who are 18 years or older, have a rheumatologist-confirmed RA diagnosis, live in Canada, and are able to communicate in English or French. We collected data through semi-structured individual and focus group interviews using telephone or video conferencing technology.

SARS-CoV-2 Infection and COVID-19 Outcomes in Rheumatic Diseases: A Systematic Literature Review and Meta-Analysis.

Objective: The relative risk of SARS-CoV-2 infection and COVID-19 disease severity among people with rheumatic and musculoskeletal diseases (RMDs) compared to those without RMDs is unclear. This study was undertaken to quantify the risk of SARS-CoV-2 infection in those with RMDs and describe clinical outcomes of COVID-19 in these patients.

Methods: We conducted a systematic literature review using 14 databases from January 1, 2019 to February 13, 2021.

Partners of female patients with rheumatoid arthritis and reproductive decision-making: a constructivist grounded theory study.

Objective: Partners of patients with RA often take on supportive roles given the debilitating nature of RA. Our objective was to explore the perspectives, attitudes and experiences of partners of female patients with RA regarding reproductive experiences and decision-making.

Methods: We conducted a qualitative study involving semi-structured interviews with partners of female patients with RA.

Heterogeneity in Patient Characteristics and Differences in Treatment Across 4 Canadian Rheumatoid Arthritis Cohorts.

Objective: To compare clinical characteristics and treatment of patients with rheumatoid arthritis (RA) across 4 Canadian cohorts.

Methods: The 4 longitudinal cohorts included the following: the Canadian Early Arthritis Cohort (CATCH; n = 2878), Ontario Best Practices Research Initiative (OBRI; n = 3734), RHUMADATA (Quebec, n = 2890), and the Rheum4U Precision Health Registry (Calgary, Alberta, n = 709). Data were from cohort inception (range 1998-2016) to 2020.