Browsing by Author "Currie, Gillian R"
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Item Open Access 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 AAbstract 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.Item Open Access Developing a Framework of Cost Elements of Socioeconomic Burden of Rare Disease: A Scoping Review(PharmacoEconomics, 2023-04-07) Currie, Gillian R; Gerber, Brittany; Lorenzetti, Diane; MacDonald, Karen; Benseler, Susanne M; Bernier, Francois P; Boycott, Kym M; Carias, K. Vanessa; Hamelin, Bettina; Hayeems, Robin Z; LeBlanc, Claire; Twilt, Marinka; van Rooijen, Gijs; Wong-Rieger, Durhane; Yeung, Rae S. M.; Marshall, Deborah A.Background and Objective: Rare diseases place a significant burden on patients, families, the healthcare system and society. Evidence on the socioeconomic burden of rare disease is limited and mostly reflects diseases where treatments are available. We developed a framework encompassing recommended cost elements for studies of the socioeconomic burden of rare diseases. Methods: A scoping review, conducted in five databases (Cochrane Library, EconLit, Embase, MEDLINE, and APA PsycINFO), identified English language publications from 2000 and 2021 presenting frameworks developed for determining, measuring or valuing costs for rare or chronic diseases. Cost elements were extracted and used to develop a literature-informed framework. Structured feedback was gathered from experts in rare diseases, health economics/health services and policy research to revise the framework. Results: Of 2990 records identified, eight papers were included and informed our preliminary framework; three focused on rare disease and five on chronic disease. Following expert input, we developed a framework consisting of nine cost categories (inpatient, outpatient, community, healthcare products/goods, productivity/education, travel/accommodation, government benefits, family impacts, and other), with several cost elements within each category. Our framework includes unique costs, added from the expert feedback, including genetic testing to inform treatment, use of private laboratories or out-of-country testing, family involvement in foundations and organizations, and advocacy costs for special access programs. Conclusions: Our work is the first to identify a comprehensive list of cost elements for rare disease for use by researchers and policy makers to fully capture socioeconomic burden. Use of the framework will increase the quality and comparability of future studies. Future work should focus on measuring and valuing these costs through onset, diagnosis, and post-diagnosis.Item Open Access Evaluating key performance indicators of the process of care in juvenile idiopathic arthritis(2022-08-24) Cooper, Sarah M; Currie, Gillian R; Marshall, Deborah A; Kromm, Seija; Twilt, MarinkaObjectiveTo determine whether and how often the required information to measure a set of previously developed key performance indicators (KPIs) was documented in data routinely collected in a Pediatric Rheumatology Clinic.MethodsA retrospective electronic chart review and administrative data analysis was conducted for a cohort of 140 patients with juvenile idiopathic arthritis (JIA) at a tertiary Pediatric Rheumatology Clinic between 2016-2020. Data was assessed as a binary variable indicating whether the required information was found. Documentation frequency for each KPI was assessed with counts and percentages of the number of times the required information was documented for each clinic visit. Compliance with the safety KPI definitions was assessed using administrative databases. ResultsAlthough data for each KPI were found in the cohort, documentation varied in frequency and consistency. Access to care and safety KPIs were documented more frequently than patient outcome KPIs. A joint assessment was documented at every visit for 95% of patients, 46% for an assessment of pain, and none for a physician’s global assessment of disease activity, an assessment of functional ability, or a composite disease activity measurement. Of the patients with documentation for waiting time for pediatric rheumatologist referral visit, 75% (n=24) had an eligible date documented. All of the patients who had a visit following their diagnosis date, had a visit within the first year of diagnosis and 78% of patients saw their rheumatologist at least once every year over their follow-up period. Tuberculosis screening was documented in 96% of the biologic patients. The first two years of eligible intervals documentation of laboratory monitoring for patients receiving methotrexate and leflunomide ranged from 76% to 90% after the first month. ConclusionAlthough the KPIs are feasible to measure in routinely collected data, there is an opportunity for improving the consistency of documentation. Having an active system of monitoring KPIs and tools to simplify measurement is a key step in the process toward improving patient outcomes. Streamlining the collection of KPI data can increase the likelihood of compliance. Next steps should involve replicating this study in various centres.