Development, Sensibility, and Validity of a Systemic Autoimmune Rheumatic Disease Case Ascertainment Tool.
Case ascertainment through self-report is a convenient but often inaccurate method to collect information. The purposes of this study were to develop, assess the sensibility, and validate a tool to identify cases of systemic autoimmune rheumatic diseases (SARD) in the outpatient setting.



The SARD tool was administered to subjects sampled from specialty clinics. Determinants of sensibility - comprehensibility, feasibility, validity, and acceptability - were evaluated using a numeric rating scale from 1-7. Comprehensibility was evaluated using the Flesch Reading Ease and the Flesch-Kincaid Grade Level. Self-reported diagnoses were validated against medical records using Cohen's κ statistic.



There were 141 participants [systemic lupus erythematosus (SLE), systemic sclerosis (SSc), rheumatoid arthritis, Sjögren syndrome (SS), inflammatory myositis (polymyositis/dermatomyositis; PM/DM), and controls] who completed the questionnaire. The Flesch Reading Ease score was 77.1 and the Flesch-Kincaid Grade Level was 4.4. Respondents endorsed (mean ± SD) comprehensibility (6.12 ± 0.92), feasibility (5.94 ± 0.81), validity (5.35 ± 1.10), and acceptability (3.10 ± 2.03). The SARD tool had a sensitivity of 0.91 (95% CI 0.88-0.94) and a specificity of 0.99 (95% CI 0.96-1.00). The agreement between the SARD tool and medical record was κ = 0.82 (95% CI 0.77-0.88). Subgroup analysis by SARD found κ coefficients for SLE to be κ = 0.88 (95% CI 0.79-0.97), SSc κ = 1.0 (95% CI 1.0-1.0), PM/DM κ = 0.72 (95% CI 0.49-0.95), and SS κ = 0.85 (95% CI 0.71-0.99). The screening questions had sensitivity ranging from 0.96 to 1.0 and specificity ranging from 0.88 to 1.0.



This SARD case ascertainment tool has demonstrable sensibility and validity. The use of both screening and confirmatory questions confers added accuracy.
From the Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals; Division of Genetics and Development, and Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network; Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.|S.M. Armstrong, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, University of Toronto; J.E. Wither, MD, PhD, Senior Scientist, Division of Genetics and Development, Toronto Western Research Institute, University Health Network, and Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network, and University of Toronto; A.M. Borowoy, MD, Division of Rheumatology, Department of Medicine, Toronto Western Hospital, and University of Toronto; C. Landolt-Marticorena, MD, PhD, Toronto Western Research Institute, University Health Network; A.M. Davis, PhD, Senior Scientist, Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network, and Institute of Health Policy, Management and Evaluation, University of Toronto; S.R. Johnson, MD, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, and Institute of Health Policy, Management and Evaluation, University of Toronto.
Susan M
SM
Armstrong
From the Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals; Division of Genetics and Development, and Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network; Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.|S.M. Armstrong, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, University of Toronto; J.E. Wither, MD, PhD, Senior Scientist, Division of Genetics and Development, Toronto Western Research Institute, University Health Network, and Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network, and University of Toronto; A.M. Borowoy, MD, Division of Rheumatology, Department of Medicine, Toronto Western Hospital, and University of Toronto; C. Landolt-Marticorena, MD, PhD, Toronto Western Research Institute, University Health Network; A.M. Davis, PhD, Senior Scientist, Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network, and Institute of Health Policy, Management and Evaluation, University of Toronto; S.R. Johnson, MD, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, and Institute of Health Policy, Management and Evaluation, University of Toronto.
Joan E
JE
Wither
From the Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals; Division of Genetics and Development, and Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network; Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.|S.M. Armstrong, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, University of Toronto; J.E. Wither, MD, PhD, Senior Scientist, Division of Genetics and Development, Toronto Western Research Institute, University Health Network, and Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network, and University of Toronto; A.M. Borowoy, MD, Division of Rheumatology, Department of Medicine, Toronto Western Hospital, and University of Toronto; C. Landolt-Marticorena, MD, PhD, Toronto Western Research Institute, University Health Network; A.M. Davis, PhD, Senior Scientist, Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network, and Institute of Health Policy, Management and Evaluation, University of Toronto; S.R. Johnson, MD, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, and Institute of Health Policy, Management and Evaluation, University of Toronto.
Alan M
AM
Borowoy
From the Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals; Division of Genetics and Development, and Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network; Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.|S.M. Armstrong, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, University of Toronto; J.E. Wither, MD, PhD, Senior Scientist, Division of Genetics and Development, Toronto Western Research Institute, University Health Network, and Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network, and University of Toronto; A.M. Borowoy, MD, Division of Rheumatology, Department of Medicine, Toronto Western Hospital, and University of Toronto; C. Landolt-Marticorena, MD, PhD, Toronto Western Research Institute, University Health Network; A.M. Davis, PhD, Senior Scientist, Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network, and Institute of Health Policy, Management and Evaluation, University of Toronto; S.R. Johnson, MD, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, and Institute of Health Policy, Management and Evaluation, University of Toronto.
Carolina
C
Landolt-Marticorena
From the Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals; Division of Genetics and Development, and Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network; Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.|S.M. Armstrong, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, University of Toronto; J.E. Wither, MD, PhD, Senior Scientist, Division of Genetics and Development, Toronto Western Research Institute, University Health Network, and Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network, and University of Toronto; A.M. Borowoy, MD, Division of Rheumatology, Department of Medicine, Toronto Western Hospital, and University of Toronto; C. Landolt-Marticorena, MD, PhD, Toronto Western Research Institute, University Health Network; A.M. Davis, PhD, Senior Scientist, Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network, and Institute of Health Policy, Management and Evaluation, University of Toronto; S.R. Johnson, MD, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, and Institute of Health Policy, Management and Evaluation, University of Toronto.
Aileen M
AM
Davis
From the Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals; Division of Genetics and Development, and Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network; Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada. Sindhu.Johnson@uhn.ca.|S.M. Armstrong, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, University of Toronto; J.E. Wither, MD, PhD, Senior Scientist, Division of Genetics and Development, Toronto Western Research Institute, University Health Network, and Arthritis Centre of Excellence, Division of Rheumatology, Departments of Medicine and Immunology, University Health Network, and University of Toronto; A.M. Borowoy, MD, Division of Rheumatology, Department of Medicine, Toronto Western Hospital, and University of Toronto; C. Landolt-Marticorena, MD, PhD, Toronto Western Research Institute, University Health Network; A.M. Davis, PhD, Senior Scientist, Health Care and Outcomes Research, Toronto Western Research Institute, University Health Network, and Institute of Health Policy, Management and Evaluation, University of Toronto; S.R. Johnson, MD, PhD, Toronto Scleroderma Program, Division of Rheumatology, Department of Medicine, Toronto Western and Mount Sinai Hospitals, and Institute of Health Policy, Management and Evaluation, University of Toronto. Sindhu.Johnson@uhn.ca.
Sindhu R
SR
Johnson
D000328:Adult; D001327:Autoimmune Diseases / Q000175:diagnosis*; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D012216:Rheumatic Diseases / Q000175:diagnosis*; D012680:Sensitivity and Specificity; D011795:Surveys and Questionnaires
RHEUMATOID ARTHRITIS; SCLERODERMA; SJÖGREN SYNDROME; SYSTEMIC AUTOIMMUNE RHEUMATIC DISEASES; SYSTEMIC LUPUS ERYTHEMATOSUS; SYSTEMIC SCLEROSIS