Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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disease or three-vessel atherosclerotic cardiovascular disease 30 years ago
(Fig. 3.2 ) [ 14 ]. This observation has been extended in many subsequent studies;
a review of all 53 reports (as of 2008) in which clinical markers as possible prog-
nostic variables for RA mortality were included indicated that self-report of
physical function (and comorbidities) were more likely signifi cant to predict
mortality in univariate and multivariate analyses than laboratory tests, joint
counts, and/or hand radiographic scores (Fig. 3.3 ) [ 15 ].
Laboratory tests, including rheumatoid factor, elevated ESR, elevated CRP, the
shared epitope based on the major histocompatibility locus [ 16 ], etc., are associ-
ated with a higher level of radiographic progression [ 17 ], but physical function
scores are far more signifi cant than laboratory tests (or radiographic progression)
in prognosis of other severe RA outcomes. Although not as extensively docu-
mented as in RA, similar fi ndings appear in other rheumatic diseases. In one
study in a general, non-diseased normal elderly cohort, poor physical function on
a patient questionnaire was as signifi cant in the prediction of 5-year survival as
smoking [ 18 ].



  1. Long-term outcomes of rheumatic diseases (and many chronic diseases) appear
    determined as much by actions of individual patients as by actions of health profes-
    sionals and medications [ 16 , 19 – 21 ]. A valuable surrogate for patient actions is
    formal education level; low education is associated with high incidence, preva-
    lence, morbidity, and mortality of many chronic diseases. For example, education
    level also is often more signifi cant than poor laboratory tests, joint counts, and/or


Fig. 3.1 Levels of 5 sources of information for ( a ) diagnosis and ( b ) management of 8 chronic
diseases (congestive heart failure, diabetes mellitus, hypercholesterolemia, hypertension, lym-
phoma, pulmonary fi brosis, rheumatoid arthritis, and ulcerative colitis), according to survey of 313
physicians (154 rheumatologists and 159 non-rheumatologists). VS vital signs, HX patient history,
PE physical examination, LAB laboratory tests, ANC ancillary studies


3 PROMs (MDHAQ/RAPID3) and Physician RheuMetric Measures

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