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Quantitative measures of rheumatic diseases for clinical research versus standard clinical care: differences, advantages and limitations

Pincus, Theodore; Yazici, Yusuf; Sokka, Tuulikki
No single measure can serve as a 'gold standard' for the diagnosis, prognosis, and monitoring of patients with rheumatic diseases. Therefore, pooled indices of several measures have been developed for patient assessment. Quantitative measures and indices in rheumatology have been used primarily in clinical trials and other clinical research, but not in standard clinical care. Indeed, most standard rheumatology care is conducted without quantitative data other than laboratory tests, which often are uninformative. Some measures used in research have been adapted for standard care. The classical 66/68-joint count with graded scoring for swelling, tenderness, pain on motion, limited motion, and deformity has been shortened for clinical care to a 28-joint count, scored only as 'Yes' or 'No' for swelling or tenderness. Patient questionnaires designed for clinical research can be lengthy, with complex scoring, so that information is not available to help guide clinical decisions. By contrast, patient questionnaires designed for standard care, such as a simple one-page, multi-dimensional health assessment questionnaire (MDHAQ), are short, save time, are easily scored, and are useful in all rheumatic diseases to monitor patient status at each visit and document changes over long periods. More attention to measures for use in standard care could improve care and outcomes for patients with rheumatic diseases
PMID: 17678823
ISSN: 1521-6942
CID: 73871

A practical guide to scoring a Multi-Dimensional Health Assessment Questionnaire (MDHAQ) and Routine Assessment of Patient Index Data (RAPID) scores in 10-20seconds for use in standard clinical care, without rulers, calculators, websites or computers [Case Report]

Pincus, Theodore; Yazici, Yusuf; Bergman, Martin
The American College of Rheumatology Core Data Set for rheumatoid arthritis (RA) includes 3 measures which are found on a patient self-report questionnaire, physical function, pain, and patient estimate of global status. These measures are included in all clinical trials, but not assessed at most encounters in standard rheumatology care. Rheumatologists may have experience with lengthy research questionnaires in clinical trials and other clinical research, which (appropriately) are regarded as relatively cumbersome research tools and do not contribute to clinical care. A format of a questionnaire known as the multidimensional health assessment questionnaire (MDHAQ) has been developed for standard rheumatology care to contribute to rheumatology clinical care in daily practice. The 3 scores for physical function, pain, and global status can be 'eyeballed' in a second or two and formally scored into a composite index known as rheumatology assessment patient index data (RAPID) in about 10 seconds. This chapter provides a brief tutorial designed to instruct rheumatologists and their staffs regarding how to use and score the MDHAQ and RAPID in standard clinical care
PMID: 17678834
ISSN: 1521-6942
CID: 73934

Monitoring outcomes of arthritis and longitudinal data collection in routine care using a patient questionnaire that incorporates a clinical note on one piece of paper

Yazici, Yusuf
Patient questionnaires are the quantitative tools available to rheumatologists to monitor their patients' health status and responses to therapy. The Health Assessment Questionnaire (HAQ) and its derivatives have been shown to be the most significant predictors of functional and work disability, costs, joint replacement surgery, and mortality; generally at higher levels of significance than joint counts, radiographs, and laboratory tests. Every encounter of a patient with a rheumatologist provides an opportunity to collect data. Yet patient questionnaires, which can be used in all rheumatic diseases, including osteoarthritis, systemic lupus erythematosus, fibromyalgia, scleroderma, and ankylosing spondylitis, are not included in routine care by most rheumatologists. Questionnaires can be adapted to include a simple subjective-objective-assessment-plan (SOAP) clinical encounter note that helps with data entry and also provides all the necessary information for clinical decision making in one sheet of paper. Data that are feasible to collect in clinical care provide the optimal approach to assessing quantitatively how patients are doing. If data are not collected and recorded, that opportunity, on that day, is lost forever. Rheumatologists would find it valuable to adapt questionnaires to the care they provide for all their patients, to document and improve the care they provide, and add quantitative data to standard clinical care
PMID: 17678824
ISSN: 1521-6942
CID: 73936

A proposed continuous quality improvement approach to assessment and management of patients with rheumatoid arthritis without formal joint counts, based on quantitative routine assessment of patient index data (RAPID) scores on a multidimensional health assessment questionnaire (MDHAQ)

Pincus, Theodore; Yazici, Yusuf; Bergman, Martin; Maclean, Ross; Harrington, Timothy
A continuous quality improvement approach is proposed for the assessment and management of patients with rheumatoid arthritis (RA) based on scores on a one-page patient self-report multidimensional health assessment questionnaire (MDHAQ), without formal joint counts. The approach includes five simple steps before the patient is seen by the physician: (1) an MDHAQ is completed by every patient at every visit; (2) scores are calculated for patient function, pain, and global estimate, with options for a self-report joint count and other scales; (3) scores are entered on flow sheets with data from prior visits, which might also include laboratory and medication information; (4) scores are compiled into an index termed Routine Assessment of Patient Index Data (RAPID), analogous to a Disease Activity Score (DAS); (5) RAPID scores are classified to guide treatment decisions. RAPID 3 includes the three patient-reported outcome (PRO) measures in the RA Core Data Set - physical function, pain, and global estimate. RAPID 4 adds a self-report joint count, and RAPID 5, a physician global estimate. RAPID 3 can be calculated in about 10 seconds, RAPID 4 in about 19 seconds, and RAPID 5 in about 20 seconds. RAPID 3, RAPID 4, and RAPID 5 give similar results to distinguish active from control treatments in RA clinical trials, at levels similar to American College of Rheumatology or DAS improvement criteria, and are all correlated significantly with DAS28 (rho=0.62-0.64, P<0.001). A proposed classification of RAPID scores, analogous to four DAS28 categories, includes: 'near remission' (0-1), 'low severity' (1.01-2), 'moderate severity' (2.01-4), and 'high severity' (>4). RAPID scoring is feasible in standard clinical care to support continuous quality improvement
PMID: 17678835
ISSN: 1521-6942
CID: 74682

An index without formal joint counts, routine assessment of patient index data (RAPID3), to help guide tight control of RA in standard care: Most patients who meet das or CDAI remission or high activity criteria meet identical preliminary rapid criteria [Meeting Abstract]

Pincus, T; Yazici, Y; Bergman, MJ; Swearingen, C
ISI:000253101101142
ISSN: 0003-4967
CID: 87138

Comparisons of a self-report rheumatoid arthritis disease activity index (RADAI) joint count to American College of rheumatology (ACR) core data set measures for rheumatoid arthritis (RA) [Meeting Abstract]

Pincus, T; Yazici, Y; Bergman, MJ; Swearingen, C
ISI:000253101101351
ISSN: 0003-4967
CID: 87141

Methodological concerns in tumor necrosis factor (TNF) inhibitor trials in rheumatoid arthritis (RA), psoriatic arthritis (PSA) and ankylosing spondylitis (AS): power calculations and 1 versus 2-tailed statistical tests [Meeting Abstract]

Yazici, Y; Moses, N; Yazici, H
ISI:000253101101162
ISSN: 0003-4967
CID: 87140

Time to score various rheumatoid arthritis (RA) assessment measures as a guide to feasibility in standard care [Meeting Abstract]

Bergman, MJ; Yazici, Y; Pincus, T
ISI:000253101101141
ISSN: 0003-4967
CID: 87137

Composite index of physical function, pain, patient global and joint count, rapid4 (routine assessment of patient index data): Virtually identical results with a patient self-report or physician/assessor joint count or no joint count in rapids [Meeting Abstract]

Pincus, T; Bergman, MJ; Yazici, Y; Swearingen, C
ISI:000253101101140
ISSN: 0003-4967
CID: 87136

Remission at the conclusion of the aim and attain abatacept clinical trials: Similar results according to disease activity score (DAS28) and an index of only patient measures, without joint counts, routine assessment of patient index data (RAPID3) [Meeting Abstract]

Pincus, T; Bergman, MJ; Yazici, Y; Hines, P; Macleans, R
ISI:000253101101681
ISSN: 0003-4967
CID: 87144