Development of a Canadian Core Clinical Dataset to Support High-quality Care for Canadian Patients with Rheumatoid Arthritis

• Published in: Journal of rheumatology 2017-12, Vol.44 (12), p.1813-1822
• Main Authors: Barber, Claire E H, Mosher, Dianne P, Ahluwalia, Vandana, Zummer, Michel, Marshall, Deborah A, Choquette, Denis, Lacaille, Diane, Bombardier, Claire, Lyddiatt, Anne, Chandran, Vinod, Khodyakov, Dmitry, Dao, Emily, Barnabe, Cheryl
• Format: Article
• Language: English
• Subjects: Antirheumatic Agents - therapeutic use; Arthritis, Rheumatoid - drug therapy; Canada; Databases, Factual; Delphi Technique; Humans; Practice Patterns, Physicians; Quality of Health Care; Rheumatology - standards; Severity of Illness Index
• ISSN: 0315-162X; 1499-2752
• DOI: 10.3899/jrheum.170421

To develop a Canadian Rheumatoid Arthritis Core Clinical Dataset (CAN-RACCD) to standardize documentation encouraging high-quality care. A set of candidate elements was drafted through meetings with 27 rheumatologists, researchers, and patients, and supplemented with focused literature reviews. A 3-round online-modified Delphi consensus process was held with rheumatologists (n = 26), allied health professionals (n = 7), and patients (n = 4); for the remainder there was no demographic information. Participants rated both the importance and feasibility of documenting candidate elements on a Likert scale of 1-9, contributed to an online moderated discussion, and re-rated the elements for inclusion in the CAN-RACCD. Elements were included in the final set if importance and feasibility ratings had a median score of ≥ 6.5 and there was no disagreement among participants. Fifty-five individual elements in 10 subgroups were proposed to the Delphi participants: measures of RA disease activity; dates to calculate waiting times, disease duration, and disease-modifying antirheumatic drug start; comorbidities; smoking status; patient-reported pain and fatigue; physical function; laboratory and radiographic investigations; medications; clinical characteristics; and vaccines. All groups were included in the final set, with the exception of vaccination status. Additionally, 3 individual elements from the smoking subgroup were eliminated with a recommendation to record smoking status as never/ever/current, and 2 elements relating to coping and effect of fatigue were eliminated due to low feasibility and importance ratings. The CAN-RACCD stands as a national recommendation on which data elements should be routinely collected in clinical practice to monitor and support high-quality RA care.