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

Published in: The Journal of Rheumatology, Volume 44, Number 12 [Epub October 2017]. doi: https://doi.org/10.3899/jrheum.170421

Posted on RAND.org on October 13, 2017

by Claire E. Barber, Dianne Mosher, Vandana Ahluwalia, Michel Zummer, Deborah A. Marshall, Denis Choquette, Diane Lacaille, Claire Bombardier, Anne Lyddiatt, Vinod Chandran, Dmitry Khodyakov, Emily Dao, Cheryl Barnabe

Read More

Access further information on this document at The Journal of Rheumatology

This article was published outside of RAND. The full text of the article can be found at the link above.

Objective

To develop a Canadian Rheumatoid Arthritis Core Clinical Dataset (CAN-RACCD) to standardize documentation encouraging high-quality care.

Methods

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.

Results

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.

Conclusion

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.

This report is part of the RAND Corporation external publication series. Many RAND studies are published in peer-reviewed scholarly journals, as chapters in commercial books, or as documents published by other organizations.

The RAND Corporation is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.