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J Rheumatol. 2017 Dec;44(12):1813-1822. doi: 10.3899/jrheum.170421. Epub 2017 Oct 1.

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

Author information

1
From the Division of Rheumatology, Department of Medicine, and the Department of Community Health Sciences of the Cumming School of Medicine, and the McCaig Institute for Bone and Joint Health, University of Calgary, Calgary, Alberta; Arthritis Research Canada, Richmond; Division of Rheumatology, Department of Medicine, University of British Columbia, Vancouver, British Columbia; Division of Rheumatology, and the Department of Medicine and Laboratory Medicine and Pathobiology, and the Institute of Medical Science, and the Krembil Research Institute, University of Toronto, Toronto; Arthritis Alliance of Canada (AAC) Inflammatory Arthritis Models of Care, Toronto; William Osler Health System, Brampton; Canadian Institute of Health Research (CIHR) National Steering Committee, Ottawa; Outcome Measures in Rheumatology (OMERACT), Ottawa, Ontario; Hôpital Maisonneuve-Rosemont, and the Institut de Recherche en Rhumatologie de Montréal, Université de Montréal, Montreal, Quebec, Canada; RAND Corp., Santa Monica, California, USA. cehbarbe@ucalgary.ca.
2
C.E. Barber, MD, FRCPC, PhD, Assistant Professor, Division of Rheumatology, departments of Medicine and Community Health Sciences, University of Calgary, Cumming School of Medicine, McCaig Institute for Bone and Joint Health, Research Scientist, Arthritis Research Canada; D.P. Mosher, MD, FRCPC, Professor, Chief, Division of Rheumatology, Department of Medicine, University of Calgary; V. Ahluwalia, MD, FRCPC, Consultant Rheumatologist, William Osler Health System; M. Zummer, MD, FRCPC, Chief, Rheumatology, Hôpital Maisonneuve-Rosemont, Associate Professor, Université de Montréal; D.A. Marshall, PhD, Professor, Department of Community Health Sciences, Cumming School of Medicine, Canada Research Chair (Health Services and Systems Research), Arthur J.E. Child Chair in Rheumatology Research, Department of Medicine, University of Calgary, McCaig Institute for Bone and Joint Health, and Arthritis Research Canada; D. Choquette, MD, FRCPC, Institut de Recherche en Rhumatologie de Montréal, Scientific Director, Rhumadata, Université de Montréal; D. Lacaille, MD, FRCPC, MHSc, Professor, Division of Rheumatology, Department of Medicine, University of British Columbia, Senior Scientist, Arthritis Research Canada; C. Bombardier, MD, FRCPC, Professor, Division of Rheumatology, University of Toronto; A. Lyddiatt, member, CIHR National Steering Committee, OMERACT patient research partner, AAC Inflammatory Arthritis Models of Care Executive Member; V. Chandran, MBBS, MD, DM, PhD, Assistant Professor, Department of Medicine and Laboratory Medicine and Pathobiology, Institute of Medical Science, Krembil Research Institute; D. Khodyakov, PhD, MA, BA, Senior Behavioral/Social Scientist, RAND Corp.; E. Dao, BS, RAND Corp.; C. Barnabe, MD, MSc, FRCPC, Associate Professor, departments of Medicine and Community Health Sciences, University of Calgary. cehbarbe@ucalgary.ca.
3
From the Division of Rheumatology, Department of Medicine, and the Department of Community Health Sciences of the Cumming School of Medicine, and the McCaig Institute for Bone and Joint Health, University of Calgary, Calgary, Alberta; Arthritis Research Canada, Richmond; Division of Rheumatology, Department of Medicine, University of British Columbia, Vancouver, British Columbia; Division of Rheumatology, and the Department of Medicine and Laboratory Medicine and Pathobiology, and the Institute of Medical Science, and the Krembil Research Institute, University of Toronto, Toronto; Arthritis Alliance of Canada (AAC) Inflammatory Arthritis Models of Care, Toronto; William Osler Health System, Brampton; Canadian Institute of Health Research (CIHR) National Steering Committee, Ottawa; Outcome Measures in Rheumatology (OMERACT), Ottawa, Ontario; Hôpital Maisonneuve-Rosemont, and the Institut de Recherche en Rhumatologie de Montréal, Université de Montréal, Montreal, Quebec, Canada; RAND Corp., Santa Monica, California, USA.
4
C.E. Barber, MD, FRCPC, PhD, Assistant Professor, Division of Rheumatology, departments of Medicine and Community Health Sciences, University of Calgary, Cumming School of Medicine, McCaig Institute for Bone and Joint Health, Research Scientist, Arthritis Research Canada; D.P. Mosher, MD, FRCPC, Professor, Chief, Division of Rheumatology, Department of Medicine, University of Calgary; V. Ahluwalia, MD, FRCPC, Consultant Rheumatologist, William Osler Health System; M. Zummer, MD, FRCPC, Chief, Rheumatology, Hôpital Maisonneuve-Rosemont, Associate Professor, Université de Montréal; D.A. Marshall, PhD, Professor, Department of Community Health Sciences, Cumming School of Medicine, Canada Research Chair (Health Services and Systems Research), Arthur J.E. Child Chair in Rheumatology Research, Department of Medicine, University of Calgary, McCaig Institute for Bone and Joint Health, and Arthritis Research Canada; D. Choquette, MD, FRCPC, Institut de Recherche en Rhumatologie de Montréal, Scientific Director, Rhumadata, Université de Montréal; D. Lacaille, MD, FRCPC, MHSc, Professor, Division of Rheumatology, Department of Medicine, University of British Columbia, Senior Scientist, Arthritis Research Canada; C. Bombardier, MD, FRCPC, Professor, Division of Rheumatology, University of Toronto; A. Lyddiatt, member, CIHR National Steering Committee, OMERACT patient research partner, AAC Inflammatory Arthritis Models of Care Executive Member; V. Chandran, MBBS, MD, DM, PhD, Assistant Professor, Department of Medicine and Laboratory Medicine and Pathobiology, Institute of Medical Science, Krembil Research Institute; D. Khodyakov, PhD, MA, BA, Senior Behavioral/Social Scientist, RAND Corp.; E. Dao, BS, RAND Corp.; C. Barnabe, MD, MSc, FRCPC, Associate Professor, departments of Medicine and Community Health Sciences, University of Calgary.

Abstract

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.

KEYWORDS:

PHYSICIAN PRACTICE PATTERNS; QUALITY OF CARE; RHEUMATOID ARTHRITIS

PMID:
28966205
DOI:
10.3899/jrheum.170421
[Indexed for MEDLINE]
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