Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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  1. A survey of 313 physicians, 154 rheumatologists and 159 non-rheumatologists,
    as noted previously, indicated that medical history and physical examination data
    are far more prominent in diagnosis and management decisions in RA than labo-
    ratory tests or ancillary studies, in contrast to 7 other prevalent chronic diseases
    [ 2 ]. RA was the only one of the eight chronic conditions in which a patient his-
    tory and physical examination data accounted for more than 50 % of the informa-
    tion required for diagnosis and management [ 2 ] (Fig. 3.1 ).

  2. A formal joint count has many limitations , as noted earlier, and is not performed
    by most rheumatologists at most visits [ 54 , 121 ]. It may be suggested that it is
    very important to recognize whether an RA patient has 2 or 12 (or 1 or 11) swol-
    len joints, but it is less important to determine whether the patient has 2 or 1 (or
    12 or 11) swollen joints. Only about 10–15 s are required to perform a careful
    joint examination without recording each specifi c joint for swelling or tender-
    ness, while 90 s or more are required to perform a formal joint count [ 71 ]. A
    0–10 DOCINF estimate may summarize fi ndings of a formal joint count in a
    much more feasible manner, and, hence, be more likely to be available, although
    formal studies of this possibility remain ongoing. It has been recognized that
    remission criteria without a formal joint count on the basis of 0 or 1 swollen
    joints give virtually identical results to formal Boolean and SDAI remission cri-
    teria [ 102 ].

  3. Since no “ gold standard measure” is available to assess and monitor all indi-
    vidual patients with most rheumatic diseases, pooled indices of multiple mea-
    sures are needed [ 55 ]. Pooled indices have been developed for patients with
    rheumatoid arthritis (RA) [ 93 , 125 – 129 ], psoriatic arthritis [ 130 , 131 ], systemic
    lupus erythematosus (SLE) [ 132 – 139 ], ankylosing spondylitis [ 140 – 144 ], vas-
    culitis [ 145 – 148 ], osteoarthritis [ 149 ], fi bromyalgia [ 150 ], and other diseases
    (Table 3.9 ) [ 50 – 53 , 68 , 77 , 78 , 125 – 127 , 129 , 130 , 132 – 138 , 141 , 142 , 144 – 166 ].
    These indices generally include a patient self-report measure, refl ecting the
    importance of the patient history in decisions concerning diagnosis and manage-
    ment in rheumatic diseases [ 2 ].
    A patient with distress may have a high score on rheumatic disease index,
    which includes a patient self-report. The high score may refl ect fi bromyalgia,
    depression, or other chronic pain or somatization syndromes, rather than high
    disease activity. Moreover, some patients who meet criteria for RA or SLE may
    have high disease activity, as well as signifi cant distress [ 72 , 73 ]. This informa-
    tion may not be captured quantitatively by a physician global score. For example,
    a patient with fi bromyalgia might have no swollen joints at all, an ESR of 20, but
    28 tender joints and PATGL of 10; this patient, would have a RAPID3 score of
    up to 20, DAS28 of 6.1, and a CDAI of 38, all suggesting high disease activity,
    although there are no swollen joints and DOCGL may be 0 (Table 3.10 ) [ 76 ].
    Even a patient with 14 tender joints and PATGL of 10, but no swollen joints and
    an ESR of 10 would have a DAS28 of 5.1 and CDAI of 27, suggesting high dis-
    ease activity (Table 3.10 ). High scores in patients with fi bromyalgia on DAS28,
    CDAI, and RAPID3 all might be interpreted (inapropriately) as indicating high


3 PROMs (MDHAQ/RAPID3) and Physician RheuMetric Measures

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