Browsing by Author "Richards, Dawn"

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    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 J
    Objectives: 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.
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    Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research
    (2024-02-12) Lalu, Manoj M.; Richards, Dawn; Foster, Madison; French, Brittany; Crawley, Angela M.; Fiest, Kirsten M.; Hendrick, Kathryn; Macala, Kimberly F.; Mendelson, Asher A.; Messner, Pat; Nicholls, Stuart G.; Presseau, Justin; Séguin, Cheryle A.; Sullivan, Patrick; Thébaud, Bernard; Fergusson, Dean A.
    Abstract Background Patient engagement in research is the meaningful and collaborative interaction between patients and researchers throughout the research process. Patient engagement can help to ensure patient-oriented values and perspectives are incorporated into the development, conduct, and dissemination of research. While patient engagement is increasingly prevalent in clinical research, it remains relatively unrealized in preclinical laboratory research. This may reflect the nature of preclinical research, in which routine interactions or engagement with patients may be less common. Our team of patient partners and researchers has previously identified few published examples of patient engagement in preclinical laboratory research, as well as a paucity of guidance on this topic. Here we propose the development of a process framework to facilitate patient engagement in preclinical laboratory research. Methods Our team, inclusive of researchers and patient partners, will develop a comprehensive, empirically-derived, and stakeholder-informed process framework for ‘patient engagement in preclinical laboratory research.’ First, our team will create a ‘deliberative knowledge space’ to conduct semi-structured discussions that will inform a draft framework for preclinical patient engagement. Over the course of several sessions, we will identify actions, activities, barriers, and enablers (e.g. considerations and motivations for patient engagement in preclinical laboratory research, define roles of key players). The resulting draft process framework will be further populated with examples and refined through an international consensus-building Delphi survey with patients, researchers, and other collaborator organizations. We will then conduct pilot field tests to evaluate the framework with preclinical laboratory research groups paired with patient partners. These results will be used to create a refined framework enriched with real-world examples and considerations. All resources developed will be made available through an online repository. Discussion Our proposed process framework will provide guidance, best practices, and standardized procedures to promote patient engagement in preclinical laboratory research. Supporting and facilitating patient engagement in this setting presents an exciting new opportunity to help realize the important impact that patients can make.