Browsing by Author "Pham, Tram"

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    A Canadian evaluation framework for quality improvement in childhood arthritis: key performance indicators of the process of care
    (2020-03-19) Barber, Claire E H; Twilt, Marinka; Pham, Tram; Currie, Gillian R; Benseler, Susanne; Yeung, Rae S M; Batthish, Michelle; Blanchette, Nicholas; Guzman, Jaime; Lang, Bianca; LeBlanc, Claire; Levy, Deborah M; O’Brien, Christine; Schmeling, Heinrike; Soon, Gordon; Spiegel, Lynn; Whitney, Kristi; Marshall, Deborah A
    Abstract Background The evaluation of quality of care in juvenile idiopathic arthritis (JIA) is critical for advancing patient outcomes but is not currently part of routine care across all centers in Canada. The study objective is to review the current landscape of JIA quality measures and use expert panel consensus to define key performance indicators (KPIs) that are important and feasible to collect for routine monitoring in JIA care in Canada. Methods Thirty-seven candidate KPIs identified from a systematic review were reviewed for inclusion by a working group including 3 pediatric rheumatologists. A shortlist of 14 KPIs was then assessed using a 3-round modified Delphi panel based on the RAND/UCLA Appropriateness Method. Ten panelists across Canada participated based on their expertise in JIA, quality measurement, or lived experience as a parent of a child with JIA. During rounds 1 and 3, panelists rated each KPI on a 1–9 Likert scale on themes of importance, feasibility, and priority. In round 2, panelists participated in a moderated in-person discussion that resulted in minor modifications to some KPIs. KPIs with median scores of ≥ 7 on all 3 questions without disagreement were included in the framework. Results Ten KPIs met the criteria for inclusion after round 3. Five KPIs addressed patient assessments: pain, joint count, functional status, global assessment of disease activity, and the clinical Juvenile Arthritis Disease Activity Score (cJADAS). Three KPIs examined access to care: wait times for consultation, access to pediatric rheumatologists within 1 year of diagnosis, and frequency of clinical follow-up. Safety was addressed through KPIs on tuberculous screening and laboratory monitoring. KPIs examining functional status using the Childhood Health Assessment Questionnaire (CHAQ), quality of life, uveitis, and patient satisfaction were excluded due to concerns about feasibility of measurement. Conclusions The proposed KPIs build upon existing KPIs and address important processes of care that should be measured to improve the quality of JIA care. The feasibility of capturing these measures will be tested in various data sources including the Understanding Childhood Arthritis Network (UCAN) studies. Subsequent work should focus on development of meaningful outcome KPIs to drive JIA quality improvement in Canada and beyond.
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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.