Abstract
BackgroundThe 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.MethodsThirty-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.ResultsTen 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.ConclusionsThe 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.
Highlights
Juvenile idiopathic arthritis (JIA) is an inflammatory arthritis that affects approximately 3 in 1000 Canadian children [1]
The proposed key performance indicators (KPIs) build upon existing KPIs and address important processes of care that should be measured to improve the quality of juvenile idiopathic arthritis (JIA) care
Subsequent work should focus on development of meaningful outcome KPIs to drive JIA quality improvement in Canada and beyond
Summary
Juvenile idiopathic arthritis (JIA) is an inflammatory arthritis that affects approximately 3 in 1000 Canadian children [1]. Diagnosis and treatment in a pediatric rheumatology center is key to improving outcomes of patients with JIA. Patients who fail first-line disease-modifying anti-rheumatic drugs (DMARDs) are often treated with biologic therapies, which are highly effective in improving outcomes, but are costly [9]. Tumor necrosis factor inhibitors (anti-TNF), the biologic DMARDs most often used in JIA, rheumatoid arthritis (RA), and inflammatory bowel disease, are the drug class that accounted for the highest proportion of public drug spending in Canada in 2018 [9]. 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
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