Browsing by Author "Proulx, Laurie"
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Item 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 JObjectives: 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.Item Open Access Patient preferences to value health outcomes in rheumatology clinical trials: Report from the OMERACT special interest group(Oxford University Press, British Society for Rheumatology, 2021-05-24) Thomas, Megan; Fraenkel, Liana; Boonen, Annelies; Bansback, Nick; Buchbinder, Rachelle; Marshall, Deborah; Proulx, Laurie; Voshaar, Marieke; Richards, Pamela; Richards, Dawn P; Hiligsmann, Mickael; Guillemin, Francis; Shea, Beverly; Tugwell, Peter; Hazlewood, GlenObjective. To inform a research plan for future studies by obtaining stakeholder input on the application of preference-based methods to clinical trial design. Methods. We conducted a virtual OMERACT session to encourage stakeholder engagement. We developed materials for the session to facilitate discussion based on identified case examples and feedback sessions. Results. Participants prioritized incorporating patient preferences in all aspects of trial design with an emphasis on outcome selection. Participants highlighted the need for careful consideration around preference heterogeneity and equity factors. Conclusion. Including patient preferences in trial design was considered a priority requiring further exploration to develop comprehensive guidance.Item Open Access “The medications are the decision-makers…” Making reproductive and medication use decisions among female patients with rheumatoid arthritis: a constructivist grounded theory(2022-01-22) Rebić, Nevena; Munro, Sarah; Garg, Ria; Hazlewood, Glen; Amiri, Neda; Baldwin, Corisande; Ensworth, Stephanie; Proulx, Laurie; De Vera, Mary A.Abstract 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. Data collection and analysis were iterative, employed theoretical sampling, reflexive journaling, and peer debriefing, and culminated in a theoretical model. Results We recruited 21 participants with a mean age of 34 years and median 10 years since RA diagnosis. Overall, 33% had never been pregnant, 57% had previously been pregnant, and 10% were pregnant at the time of interview. Of those who had experienced pregnancy, 64% had at least one pregnancy while diagnosed with RA and of those, 56% used DMARD(s) during a pregnancy. We constructed a patient-centred framework depicting the dynamic relationships between 4 decision-making processes—(1) using medications, (2) having children, (3) planning pregnancy, and (4) parenting—and the substantial impact of healthcare providers on patients’ experiences making these decisions. These processes were further influenced by participants’ intersecting identities and contextual factors, particularly attitudes towards health and medications, disease onset and severity, familial support system, and experiences interacting with the healthcare system. Conclusion Our framework provides insight into how patients make reproductive decisions in the context of managing RA and the opportunities for providers to support them at each decision-making process. A patient-centred care approach is suggested to support female patients with RA in making reproductive and medication choices aligning with their individual desires, needs, and values.